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I live with this Chronic pain disease. It totally changes your life and so many suffer with it. Please help find a cure! I would love to meet other Fibro or chronic pain suffers here on Posh! Please feel free to like and leave a message! Lets be a support system for each other! ππππππππ
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here4looks77
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239 Comments
jakeamom12
@jrtharcrow
May 12Reply
jacquelinebr
Thanks for the share.
May 12Reply
5kewlklosets
Think I have this... π
May 14Reply
skiper
I was diagnosed about 4 yrs ago
May 14Reply
jakeamom12
@skiper so sorry to hear it!! I hope you have a great doc and support system!!! Anytime u need to talk,I'm here!!! It's always nice to have someone who knows what you're going through! A lot of times family and friends have a hard time understanding this horrible condition,because we don't look sick!! Gentle hugsππππ
May 14Reply
jakeamom12
@laalba thank you and you're right no one knows how devastating this can be! It took me many years and doctors who didn't believe in Fibro to get a diagnosis. As a teenager before there was such a thing, I was called lazy and was sent to a psychiatrist because they thought I was a hypochondriac. I was so thrilled when it was officially made a disease and given a diagnosis code in the medical books! I wish your mom and your family well,because its just as hard on the family of someone with Fibo!!β€ππππ
May 21Reply
jakeamom12
@laalba πΌπΌπΌπΌ
May 21Reply
x101natasha
I Understand how you feel, What helps me is Tumaric pills and a lot of hot baths and yoga! Will keep you in my prayers.
May 22Reply
jakeamom12
@x101natasha thank you!! I will also keep you in mine!!! Gentle hugsπππππ
May 22Reply
jakeamom12
@5kewlklosets check it out! I changed it up!!!!
May 22Reply
jakeamom12
@skiper check it out! I changed it up a bit! Thought maybe we could share this and invite other chronic pain suffers to like, so we could have a posh support group!
May 22Reply
jakeamom12
@tinker_bell check it ou! I changed it up a bit! Thought we could get the word out to other chronic pain suffers on here and have a posh support group!
May 22Reply
kellygirltx
You just met another Fibromyalgia gal, right here. I've lived in severe chronic pain for 18+ yrs now from injuries & the Fibro set in after that. Life is a daily struggle to keep a worthwhile attitude. Nice to meet You!!!
May 22Reply
skiper
Had a painful day today took everything in me to stay at work but I made it (I forgot to take a pain pill before I left for work) its in my upper arms today and the back of my shoulders sometimes I just wish it would pick one place at least then I would know what to expect
May 22Reply
jakeamom12
@kellygirltx nice to meet you too! It's an awful disease we have!!! Please let's stay in touch as support for each other!!! Gentle hugsπβ€πππ
May 22Reply
jakeamom12
@skiper I'm so sorry,I hope tomorrow is better!!! I also hope sales pick up for you!! They've been really slow lately for me too! Rents due next week and I hope there's enough in the bank to cover it! Stress just makes my pain worse!! Gentle hugsππππππ
May 22Reply
kellygirltx
Absolutely! Lets do. I woke up & am hurting. That's why Im on Posh, thought Id check-in. Yep-Gentle Hugs!! <3<3<3. FB has a pretty good support grp too, just fyi.
May 22Reply
jakeamom12
@kellygirltx pain has me up too!! Never sleep more than a couple hours t a time!! Yes I am on several FB groups!!!
May 22Reply
kellygirltx
I hope you get some sleep. My Dr Dave me m-relaxer to help. I still wake every cpl hrs but do fall back to sleep w med. Setting up my Closet is taking 3x longer bcz the pain gets in the way of doing things. G'Night & I hope you sleep!! Zzzzzzz. ;))
May 22Reply
jakeamom12
@kellygirltx you sound like me!!!! I hope you get some sleep too!!! Going to go submerge my whole body in the pool tomorrow !!! The pool and water therapy is the bomb!!!
May 22Reply
kellygirltx
OMG! Our pool helped me every day, to be completely weightless in the water for awhile was like a renewal each day. Our pool went kaput & won't have another til beg of July now & oh how I miss it!! Another reason my swimsuit is For Sale. I 'll get another one later. ;-))
May 22Reply
jakeamom12
@kellygirltx the best part is I get paid whie I'm soaking!! My apt complex hires me in the summer to be the pool attendant!! So I soak and sun while I get paid!!!
May 22Reply
kellygirltx
You can't beat that!!! ;-)))
May 22Reply
5kewlklosets
Very cool!!!! Btw ive had severe chronic daily migraine since i was 8 (30 yrs) Ill be waiting for my "real" diagnosis on the fibro, Although, I have no doubt - I just waited Wayyy to long to talk to my dr about it. Long enough to hurt all over and wake up every couple hours with something hurting!!! Starting the cymbalta today and wishing that this darn Motrin would do something!!! Love the page!!!! Thanks!!!π
May 22Reply
5kewlklosets
@stacey1971 fibro group :):)
May 22Reply
jakeamom12
@5kewlklosets thanks!!! I'm sorry your still hurting this morning!! Hopefully the Cymbalta will kick in soon!!! Just be aware it may upset your stomach and make you dizzy and sleepy at first!! It's worth it though!!! Even if it just calms it down!!!πππππππ
May 22Reply
jakeamom12
@stacey1971 ππππππππ
May 22Reply
5kewlklosets
@jakeamom12 ok...ill keep that in mind. Starting is 30 mg for a week so it may not b so bad. I have nausea med if I need it!! π
May 22Reply
jakeamom12
@5kewlklosets good! I was going to suggest that!!! I always have nausea meds on hand!!! As well as 6 others!!!! Rx meds are a killer on the wallet!
May 22Reply
5kewlklosets
@jakeamom12 I have no idea how much it will be my prescription coverage is generic only so my dr has to write a letter and said it may b a fight! For now I have samples!!!!
May 22Reply
jakeamom12
@5kewlklosets does it come in generic??? I know my copay is $35 for it!
May 22Reply
5kewlklosets
That's probably what it will be. My generic copy is usually $10 x 6 a month plus five kids all five on meds....one has 4 -one has just just one...the oldest keeps changing she may be on 2-3 ...and the youngest 4- plus last kid -2. ADHD - anxiety, insomnia and bipolar. Poor kiddos :( they're all great but can u believe all the crap they diagnose kids with these days?!
May 22Reply
5kewlklosets
Oh and no cymbalta has NO generic. I've already tried gabepentin, sereqoul (ooh bad reaction) and lyrica....
May 22Reply
jakeamom12
@tinker_bell I'm so sorry that you're going through this! I will pray for you! It's unfortunate that medications that are supposed to help you,, can have such terrible effects on you! I had to come off of Savella for a really bad reaction. Gentle hugs,my friendππππππ
May 22Reply
jakeamom12
@tinker_bell no tremors but confusion,hot flashes, sweats, blurred vision, stomach pain and muscle weakness. It was awful and I am on Cymbalta as well.
May 22Reply
lcooke
@jakeamom12 thanks for sharing. We have fibromyalgia in my family, I know how debilitating it can be & how some people still think its not a real disease. Easy for them to say when they don't suffer. Take care & let's hope they will find a cure & soon ππβ€
May 23Reply
jakeamom12
@icooke πβ€πππ
May 23Reply
jakeamom12
@lcooke πππππ
May 23Reply
jakeamom12
@mrsrocsci @jrtharcrow @haybay7789 @5kewlklosets @laalba @x101natasha @kellygirltx @joanwyoung @scarlettstained πΊπΊgood morning my dear friends!!! I hope everyone will have a great day and as little pain as possible!! I am in a flare! Even my eyelids hurt and my lips burnπ my financial stress isn't helping any! But enough of the negative!! We have to stay positive and remember God will give us the strength to get through! All we have to do is ask! I will say a little prayer for all of you today!! Gentle hugs, Traciπππππππ
May 23Reply
crones_closet
What a great page. I am also a fibromyalgia victim. Unfortunately have not found any meds that really work. Being on here gives me something to do and keep my mind off the pain. I hope you all have great dayπ
May 23Reply
jakeamom12
@nocommonscents welcome! I too use this too keep my mind off the pain! I also use it to keep me from being bored when I'm up all night with insomnia and trying to use it as a supplement to disability to keep a roof over my families head! If you don't mind,could you like this post so I can keep up with you??? Thanks and gentle hugsππππππ
May 23Reply
scarlettstained
My prayers with all of you todayξ’so many people are coming down with this. It makes me wonder if it has anything to do with the pesticides and toxins we are being filled with in our foods and even some medications we receive . Even our shampoos . I've been doing alot of research on genetically modified foods and finding they are crossing salmon fish with a tomato to make a sub zero tomato and selling these to us without labeling. And many other things Monsanto in our corn.poisons that are deadly and cause nerve damage.being fibromyalgia is pain at pressure points all over the body, my mind has strong thoughts of this ....could it be deposits of toxins attacking. that effect the nerve endings. I pray they invest more money and testing into this to not only find the cure but the cause. You ladies are wonderful continue to lift one another.and let's help one another.and give eachother strength to go forward.
May 23Reply
jrtharcrow
sending up prayers, take it slow. we are not in a marathon , rest,rest,rest! big autoimmune sucks hugs!
May 23Reply
jakeamom12
@5kewlklosets hope you're doing ok today!! Haven't heard from you!πβ€πππ
May 24Reply
5kewlklosets
I'm very upset I believe I've been scammed. Waiting for a Paypal refund to no avail. $35. 2 items in "like new condition" stained and pilled. Garage sale quality . Asked politely to return I was blocked by her and her mother look it up hapahaole under the vs sweatshirt and then my reply after I was blocked by them under my poodles!!!! ππππ
May 24Reply
5kewlklosets
Oh my posting is under her vs sweatshirt hapahaole is her name
May 24Reply
5kewlklosets
Her oh so mother that allows her to treat people with such disrespect is stylemekelly
May 24Reply
jakeamom12
@5kewlklosets oh no!!!! I hate that!! It's happened to me twice!! Have you contacted PayPal ?? They have a buyer protection policy!! Make sure you post an alert about her!
May 24Reply
5kewlklosets
I'm about to ask someone to post and ask her if she is REALLY planning to refund and why she hasn't yet? I will return the items when I get my $ like I told her. Very fishy to block someone being mature and honest. I also attempted at first to have her contact me by email instead of even posting on her wall.
May 24Reply
jakeamom12
@5kewlklosets I saw that!!! Then she said you called her a liar, I didn't see any such thing!
May 24Reply
5kewlklosets
Yes she was sent a dispute on pp and has 3 days to refund or I can dispute further. I have been with Paypal for 12 years. Have a credit card and debit with them. They treat their long time customers no questions asked. So I have no doubt I will have to take it to the next step-not seeing any money yet!!!! Just peed off really bad. How can people be so dishonest!?!?!? Makes me sicker than I already am!!! π
May 24Reply
5kewlklosets
No!! Was super kind about it!!! Asked politely then get blocked and don't contact me again you liar!!! What? The kid is like 14....her mom obviously has no class and wouldn't speak with me either!!! I did nothing wrong! She sent me junk!! Not like new anything!!!!!!!!!
May 24Reply
jakeamom12
@5kewlklosets don't let people like that get you down!!! PayPal will take care of it!! By the way I told you I would tag you when I posted all my new make up!! Just finished tonight! Gentle hugs my sweet friend!πππππ
May 24Reply
stitchesforyou
I too suffer from pain mine started when I was about 18 I found tanning beds to help but with my asthma I can't tan like I'd like to I've also found that PMS pills help somewhat too. After you have lived with illnesses for a while we could probably tell the docs to thing or two. Lol
May 24Reply
jakeamom12
@stitchesforyou yes we can!! I haven't thought about the tanning bed, makes nice! I love to sit in the sun because the heat feels soooo god! May try it! Please like this page so we can all keep up with each other! That's what I made it forπ
May 24Reply
jakeamom12
@afbummer yes this disease is horrible and I am sorry you too have it!! Please like this post, I set up a place for us Poshers with Fibro and other chronic pain illnesses to support each other! Gentle hugs!πππππ
May 24Reply
afbummer
@jakeamom12 If u have a pool you can go to DO IT! It saves me!!! You are weightless and I swear the pain melts away!!
May 24Reply
jakeamom12
@afbummer I do! I go daily!! In the summer that actually pay me to be pool attendant! All I do is sit in pool,my therapy and sun!! The heat of the sun makes me feel good!! I get paid to do it!!!!
May 24Reply
afbummer
@jakeamom12 you are so lucky!!!!!
May 24Reply
josibee
Took a "few" doctors to finally come up with the FM diagnosis. I have worked in the medical field for years, and it is so frustrating to hear old coworkers not believing there is such a thing. I saw pain specialist yesterday-I'm praying we can work as a team, and find something that helps with the pain! I'm finally off the big steroids, thank goodness...I'm thankful to have "met" you all. I know, YOU KNOW, how I'm feeling! I'm actually laying in bed right now, with a heating pad AND ice pack!!LOL Wishing you all a great weekend :)
May 25Reply
jakeamom12
@josibee right there with you today and the financial stress I'm under is just making things worse!! I'm praying for you!! Gentle hugsππππππ
May 25Reply
josibee
The finances stress has hit here also :( I've had 2 hospital stays (week long) within a month and a half...trying to figure out how to pay those bills!!! Oh... The list is long!! :) I will start selling items within the next couple weeks. My daughter and I have some awesome things! Hopefully we can actually SELL!! Hang in there, you will be in my prayers.
May 25Reply
jakeamom12
@josibee I know! Rents due next week and I am still short!!! Nothing like worrying wether your family will have a roof over their head or not!!! All I do lately is cry!!!
May 25Reply
josibee
I'm so sorry to hear that... We went thru the foreclosure nightmare last year. It is so frightening and disheartening not knowing what the next step is, "where are we going to live now???!" Like I said, I will keep you in my prayers. (BTW, I'm a mom of an awesome son too!)
May 25Reply
jakeamom12
@josibee thank you so much for you kind words and prayers!! My motto is if God brings you to it, he will get you through it!πΌ
May 25Reply
wisconsingirl
I have fibromyalgia too! It's such a tough thing to live with, and it's not taken seriously enough by a lot of people (including doctors). I hope you're doing well :)
May 26Reply
jakeamom12
@wisconsingirl thanks for liking this post!! Please feel free to come back to talk anytime!! I wish more people did take this disease terribly, I will say there have been big strides since I was diagnosed 10 yrs ago! The Medical Association actually gave it a diagnosis code, making it a real disease and its starting to get easier to get disability for it! Still hard,but easier! Gentle hugsπππππππ
May 26Reply
sweetdoll22
What a true blessing to find this!! In such a large community, with so many post & people on here. It's so nice to hear from other people & know I am not alone. Everyday is such a struggle & a challenge. What helps me get through my bad days, is to ALWAYS remember no matter how horrible we feel it could ALWAYS be worse!!! I wish Fibro would be taken more seriously, as many think you may look alright on the outside, that you feel alright on the inside. Many of my closest friends don't even get it. Sometimes I feel so alienated & alone, that it's hard to stay optimistic, but I try to do my best. If anyone on here lives in the South FL area & has a good Dr that they are happy with, PLEASE feel free to share the name. Stay strong & Hopeful in this journey, & we WILL find more answers & more studies will be done before we know it!! Take care & stay strong. If you ever need to vent, or whatever feel free to contact me at: stacyrobynb@aol.com
Wishing All of You the Best & that tomorrow is a good day!! Take care. π ππππ
May 27Reply
sweetdoll22
What a true blessing to find this!! In such a large community, with so many post & people on here. It's so nice to hear from other people & know I am not alone. Everyday is such a struggle & a challenge. What helps me get through my bad days, is to ALWAYS remember no matter how horrible we feel it could ALWAYS be worse!!! I wish Fibro would be taken more seriously, as many think you may look alright on the outside, that you feel alright on the inside. Many of my closest friends don't even get it. Sometimes I feel so alienated & alone, that it's hard to stay optimistic, but I try to do my best. If anyone on here lives in the South FL area & has a good Dr that they are happy with, PLEASE feel free to share the name. Stay strong & Hopeful in this journey, & we WILL find more answers & more studies will be done before we know it!! Take care & stay strong. If you ever need to vent, or whatever feel free to contact me at: stacyrobynb@aol.com
Wishing All of You the Best & that tomorrow is a good day!! Take care. π ππππ
May 27Reply
jakeamom12
@sweetdoll22 thank you for your kind words! It's sooo nice to have people who understand you!! Gentle hugsππππππ
May 27Reply
deejfred
@jakeamom12 I didn't even know there was a "day" for FM. I was diagnosed in 99 and get so tired of hearing its all in your head tell me that when I can't walk or hold a pen. God bless you for posting!
May 27Reply
jakeamom12
@deejfred I understand completely! Please make sure and like this post so we can all keep in touch!!! Gentle hugsπππππππ
May 27Reply
cechastant
I've been having it for 6 years
May 28Reply
jakeamom12
@cechastant I am sorry to hear it!! It's really no fun!! Please feel free to like this post so we can all keep up with each other !! Gentle hugsπππππ
May 28Reply
jakeamom12
@5kewlklosets text me about your appointment!!!!ππππ
May 30Reply
cherryblast
@jakeamom12 I'm so glad and happy to have found this. Thanks. I hope to get to know you a lot better. I get lonely sometimes when I don't leave the house due to pain and taking meds. On top of my FMS/CFS both my two daughters, 22 and 14 have type one diabetes. Have since they were 2 and 3. Hubby has it too. Has had a stroke, kidney transplant, double below the knees amputations. The list just doesn't stop. Now my 14 year old was just also diagnosed with ADD and is bipolar. Trying to get meds regulated. Too much to tell everyone at once. I know. I feel like this is a lifetime of news shared in a paragraph. I hope to make some good friends here. Thanks @jakeamom12 and @5kewlklosets
Jun 01Reply
jakeamom12
@cherryblast so nice to meet you!!!! Will keep you and your family in my prayers!!! My sis n law has bipolar,has had it since her teens!! She's going on 40 and is just now getting help!! I know how tough watching a loved one with bipolar struggle! Getting help for her now is the best thing you can do, my in laws never did and its been an awful thing to watch such a smart,beautiful woman turn her whole life upside down and her 16 yr old son has had to endure it!!ππππππππ
Jun 01Reply
5kewlklosets
@cheeryblast I was diagnosed literally 3 days ago with fibro and have 5 kids on meds for adjacent bipolar and anxiety. But have been chronic pain patient for several years,,it's funny I figured out I had fibro from talking to alot of people. We're around daily-just hot us up if u need us!!!! π
Jun 01Reply
5kewlklosets
@cherryblast I am only 2 hrs north of you!! I've been to u of m for pain mgmt! Is that where u go????
Jun 01Reply
jakeamom12
@cherryblast no I go to Sheltering Arms here in Richmond!!! They are fantastic!!
Jun 01Reply
5kewlklosets
@cherryblast also wanted to tell u our daughter had to go to u of m to get her meds regulated for bipolar. It's very hard yet were wonderful there. If u want to ask me any questions email me Kelseydancemoms @yahoo.com. Kristin
Jun 01Reply
kathrynswraps
@jakeamom12 feel your pain.. I have been dealing with this same stupid chronic pain for a long time.. Wish u well and air hugs.. :-).
Jun 01Reply
cherryblast
@5kewlklosets holy cow you live only a couple of hours away! When was your daughter diagnosed with bipolar? Mine was just diagnosed a few months ago nothing's have been so tough. As for pain mgt I used to go the hospital but now I just go to my primary doc that I've seen for 22 years at a satellite u of m clinic. East Ann Arbor on Plymouth rd. (in Ann Arbor) maybe we could meet up sometime when you have an appt
Jun 02Reply
5kewlklosets
@cherryblast just north not even 2 hrs off 75 :) we took our daughter in to u of m-hospitals and drs up here messed up her meds really bad and she was manic and psychotic / u of m took her for 3 wks and put her on lithium (she's 16-so just underage clinically) all is good now but she wants off it because of weight gain and acne and making her tired. Ugh. Idk! I have severe chronic daily migraine and fibro. I knew I had it long time ago, just the pain is getting so bad I wake up constantly so I finally got to a dr and going to just a local pain dr to see abt switching up my pain meds-tolerance to everything-always switching-unfortunately I need 24 hr pain mgmt so my case is not easy plus have been allergic to so many preventatives!!!! Been so tired from not sleeping wellπheading to bed. Email me @ kelseydancemoms @ yahoo.com
Jun 02Reply
tiffaneyrae
I don't usually post personal stuff on POSH but I just was reading up on some Vi stories and then got tagged in your post. I am a promoter of Visalus My mom has Crohns and she is now having great results fewer infusions and taking fewer meds. I really just wanted to share the article. Hope if helps:)
http://getoutngo.com/body-by-vi-90-day-challenge/the-body-by-vi-challenge-life-changing-stories/
Jun 03Reply
jakeamom12
@tiffaneyrae thank you!πππ
Jun 03Reply
jakeamom12
@kim354 we have a lot in common!! I have has three back surgeries on a fusion in 2006, which left me with sciatic nerve damage and some spinal cord damage. I have been fighting for a stimulator for years and they won't do one!! Good luck to you and nice meeting you!ππ
Jun 04Reply
reneeanderson
Hi:) I was diagnosed with IC ( bladder disorder) 12 yrs ago and then came fibromyalgia :-/ along with many other chronic ailments ( migraines & endometriosis ). It's a daily battle physically and emotionally. I still teach and do my art, but many days are just spent in bed. I am thankful to have wonderful children, family & friends who support me, but at the end of the day only one who suffers from this can truly understand what it is like to have this condition. Ty for posting this! We need to support one another!!! Ne:)
Jun 05Reply
jakeamom12
@reneeanderson it's so nice to meet you!! I too had endometriosis and had a hysterectomy at 30!!! They still say that I have some on my bladder so I know all about bladder issues and it actually spread to my sciatic nerve from my first back surgery causing a huge ball of scar tissue! It's all awful! You are right no one Dan understand what we go through except others going through the same thing! Please feel free to message me anytime, even just to say I hurt!πππππ
Jun 05Reply
reneeanderson
Ty that means a lot! I am a two hr at a time sleeper also:-( such a drag! I get up every morning at 6:30 got to work ( autism /behavior specialist) and jump right into to bed when I get hm with the heating pad most days! I've been on everything you can think of. On Prozac and pain meds now. It's hard to fight that fine line with the meds on a daily basis... Have to keep just enough in as my body is addicted but I keep myself always at a limit to function!!! I do yoga when I can and my kids, art and job get me out of bed each day. I PRAY ALOT!!!! I will pray for you and everyone on this blog! Ty again! Plz share when you need to also. You seem to have a sweet soul! Leaving for SEDONA AZ To my families place for two weeks... I will re energize my body and soul!!! Can't wait!!! Much love to you!:)
Jun 05Reply
jakeamom12
@reneeanderson I too only sleep 2-3 hrs at a time!!! So most nights I am on here, so if you're ever lonely at 3 in the am check to see if I'm up!! Gentle hugsπππππ
Jun 05Reply
reneeanderson
@josibee OMG!! I thought I was the only one who lays in bed with the heating pad and ice packs at the same time!!! I NOT CRAZY!!!! Well may I am just a little :)lol! So nice to have this blog for support ladies!!!! Ne
Jun 05Reply
reneeanderson
Ty I will def keep that in mind ! Ditto!xoxo
Jun 05Reply
josibee
Josibee @reneeanderson Well....it's after midnight, and can't sleep. I had injections in my back today, and the pain is keeping me from sleeping. Just read your note, and it made me chuckle!! Yes, we both are silly to use heating pad with ice bag...doing it right now, hoping I don't get electrified!! Hope you are having a restful night, take care :)
Josi
Jun 06Reply
jakeamom12
@josibee I hope you feel better and that the injections help!! Gentle hugsπππππ
Jun 06Reply
reneeanderson
@josibee hi:) I hope you are resting now:) what kind if injections do they give you? Having a bad week myself... Pain every where and migraines on too of that. Feel a bit better this am. I think it's stress this week as wrapping up work... Teacher... Last week of school. Hope you get some rest today. You will be in my thoughts. Hang in there girl and stay on touch:) Ne
Jun 06Reply
josibee
@jakeamom12 @reneeanderson
Good-morning friends! Hope you had a perfect amount of sleep! So... I went to a new pain specialist a couple weeks ago, and he ordered more injections in my back. They are steroid injections. I have received these before, only helping me a couple times, but I was at the point of needing ANTYHING! They chose more in the hip area (the SI JOINTS) this time. After a couple days of stiffness and soreness, it should ease the pain. We'll see...
Hope you have a wonderful day-I'm on my way to the kitchen to refill ice bag :)
Jun 06Reply
reneeanderson
@josibee hi girl! Hope you are better today and injections are working !:)
Jun 07Reply
jakeamom12
@josibee yay!!!! I'm glad they're working!! Tropical storm Andrea is coming through here and causing a storm in my body!!! UUGH!
Jun 07Reply
reneeanderson
Hi ladies... Sending out lots of prayers to everyone tonight!!! having a bad night with pain all over...off my sugar diet this week:-/ as it ia last week of school lots of parties for our kiddos ... Hard to resist along with the stress!!! UGGGG! It really helps knowing I am not alone with this disorder! leaving for vacation sat. Well needed and ready to rest my body and mind! I hope everyone e has a super weekend!:) lots of love to you all!Ne:)
Jun 07Reply
jakeamom12
@reneeanderson in lots of pain myself tonight!! Have a great vacation!ππππ
Jun 07Reply
reneeanderson
@jakeamom12 you are in my prayers special lady:) I will! Ty! Try and get some rest tonight! We all have angels watching over us:)
Jun 07Reply
jakeamom12
@reneeanderson πππππΌπΌπΌ
Jun 07Reply
josibee
@jakeamom12 @reneeanderson
Had a rough day today- tomorrow will be better!! Hoping you both get a great nights sleep with wonderful dreams!!
Have a happy Friday πππJosi
Jun 07Reply
reneeanderson
@josibee yes... Sleep well also! You are in my prayers:)
Jun 07Reply
mimzy74
@jakeamom12 hello ms Traci, thank you for all the shares, I too suffer from fibromyalgia , so bad that I can hardly walk anymore..at 38 and under continuous care from many doctors, it has been getting worse. At this day, I can not talk because my jaw is locked and I am in pain! God bless you through all your pain and may he find us a cure and keep you healthy safe and strong forever, with love and respect, Rosie
Jun 07Reply
aliali
@jakeamom12 hi Traci, my name is Ali and I'm a fellow FM sufferer! Ugh!! I thought I'd reach out to you. Hope all is going as well to be expected! I would not wish this on anybody!!! Mornings are the worst for me! I've been going back and forth with disability! I have a few other ailments, I should have been awarded by now! Anyways, I wanted to say hi and touch base with you. Ttyl ππππ
Jun 10Reply
jakeamom12
@aliali thank for reaching out! It's nice to meet you! I wouldn't wish Fibro on my worst enemy!!! Just got back in town from a very bust weekend and its raining so I am flaring big time today!! It's noon and I'm still in bed and ill probably stay there!! Give me a little while and I will take more pics of the shoes!!! Gentle hugs, Traci ππππππ
Jun 10Reply
aliali
@jakeamom12 @5kewlklosets π hi ladies, first in response to the a ugh, I know when it is wet out and rainy it's the worst on my body and mornings are usually the hardest if I sleep more than a 3 hour period. I always have to move around too. Im from Minnesota. We are barely having a spring here, the winter has been soooo long!
PLUS, I've been suffering with Migraines since I was in the 3rd grade now I'm 37. I usually have to ice my head, have complete darkness and no noise!! Oy-vei. I'm so glad that there is this thread going on year for us suffering from FM. It's so nice that there are other people that "really" have it!! I've heard that before. I mean, I understand to a point when we don't look like anything is "wrong" with us. But in the same sense you can't tell who has Diabetes, HIV, or other "faceless" diseases or syndromes!?? But they are in turn treated 100% differently. Most of the time my arms feel like heavy logs or like someone is pushing them down. Oh, don't let me have to drop something and have to bend down and get it, uf-ta that's a hard one! Hahaha... I'm so happy to have found you ladies on here it is such a blessing. Thank you all!!! I'm also lucky to have my wonderful mother to help me and my four beautiful children! One daughter who turned 16 on the 9th! Holy cow!! Then I have twins (boy/girl) who are 13, and my little buddy Tristan who is 7. (8 @ the end of July).
Thank you again ladies you rock! Lets keep Inspiring each other! πππππ prayers
Jun 11Reply
missrochelles
I was diagnosed 4 years ago. :( I just had some trigger points yesterday :( Check out @tinker_bell
Jun 11Reply
5kewlklosets
@reneeanderson @josibee hey ladies!!! I am also toooo young to have these issues. My bf and I have five kids!!!! 4 are teen girlsπ I'm 38 diagnosed with chronic daily migraine at age 8. In and out of hosp and clinics. Tried it all....my family dr switched me to fentynal so I can function until I get back to a specialist. Anyone experienced this med? Day 3 nada?!?! Supposed to be 72 hr med wears off around hr 40-44 what the heck!? My aunt also has fibro she told me about a joint cream called voltarin (sp?) mine r way worse at night while attempting to get sleep (both migraine and the fibro) anyone tried that?? Hoping to get my meds back on track soon. Finding the key is switching every six mos or so before tolerance kicks in. Also idk what to try for a rescue med at this point with both issues?! Suggestions, anyone?? And lmao I also have ice on my head and a heating pad on my back alllllllll the time π I look like a dork.. Oh god. Also, can't remember who the teacher was bit I also have a degree in secondary Ed.english and comm/theater - love directing!!! Subbed for six yrs finally jobs r coming around (there was NONE) and idk if I can handle it!!!!! π¬I know I would get the one opening for honors English!!!! They need a play director and I have tons of experience I just want to feel good and function!!!!!!ugh!
Jun 11Reply
5kewlklosets
@cherryblast hi sherry. Just can't afford to go back to u of m am going to see a local new dr. More of my story ππ. I'm even putting off my closet right now I'm hurting! So I need some fast answers!!!! Any med recommendations I may not have tried!! Anything!!!!
Jun 11Reply
5kewlklosets
@aliali alexis I meant to tag u also because I have had migraines since I was 8 also I am now 38!!! πread more above!!
Jun 11Reply
jakeamom12
@5kewlklosets hey girl!! I used the fentanyl patches, they never lasted 72 hrs and the longer I used them the less they worked and they were very addictive,coming off of them was a nightmare!! I LOVE Voltaren gel!!! It worked fantastic on my joint pain!! You should try it!!! I'm sorry your not doing well!! I will share your closet for you until you feel better!ππππππ
Jun 11Reply
magster
I live with a chronic pain illness as well. I have RSD. We need to find a cure for fibromyalgia! I hope you are able to manage your pain. God bless!
Jun 11Reply
jakeamom12
@tinker_bell I pray for you everyday!! I'm sorry you are having such a hard time!! Just know I'm here for you day or night! ππππππ
Jun 11Reply
jakeamom12
@tinker_bell I'm so glad it helped!!!ππππ
Jun 11Reply
aliali
@5kewlklosets Kristen, & whoever else wants to read. First of all Kristen, omg are pain lives so similar!!! π€π. Have u ever had to drive yourself to the hospital/ER while throwing up in a bag at the same time??!? It's the worst!! I have chronic acute migraines plus the Firbo. The doctors have me on Cymbalta and Lyrica. At first when they had put me on Lyrica, they started me on
Jun 11Reply
5kewlklosets
@aliali I think your post cut off!! Anyway, all those nerve preventatives make me crawl with anxiety attacks and blurred vision. So I can't take them!! π And yes everyone's been working my parents live 2 hrs away and I've "barely" driven myself to the ER. This is all insanity - haven't been for 2 mos now? My ins copay is crazy so I wait it out as long as possible!!!! I can do "some" like topomax worked for a short spell. But seems I get reactions to alot. Right now on Effexor but not doing a darn thing. Waiting for my dr to call 2 c if I can change my patches @ 48 hrs. What the heck??? He's soooo busy. I swear!!! Anyway, hanging in. Need to sell. Chose to just throw another one on an hour ago a day early cuz I just can't take it...until he calls!!! I had been on it only once for a few mos before I switched to subutex which worked than just stopped...acted like a sugar pill. Nothing!!!! Ok ttyl!
Jun 11Reply
aliali
@5kewlklosets Kristen--oops -- hit post too soon sorry....
Anyway, they started me on 200mg of Lyrica 2x a day, UGH that was too much!! I would feel all looped up, like I was on the computer once and I woke up with my head on the keyboard! Sometimes I would stand and fall asleep. Another time I went to the bathroom in the middle of the night and I started to fall asleep and pull up my satin bottoms up and slipped and fell and hit the door!! I had big gash on my left eye on my eyebrow line. So, here I go with 4 kids to the ER to get stitches! (This was approx. 4 years ago) SO I had the doctor lower my dose, from 200mg 2x a day to half of that. The loopiness went away thank goodness! I'm still on the Cymbalta too and anxiety medicine. I do have other health issues lately (w/in then last two years). I was passing out often, a few times with incontinence not fun! I went to the ER and lots of tests done and they said my potassium and magnesium was extremely LOW, my EKG came back also stating that I have Prolong QT with Torsades de Pointe which can cause sudden cardiac death!! I was petrified!! I was admitted right away for a week for tests. I went home with a holter monitor which is only a 24 hour monitor to see if anything happens. More events happened admitted again, with in a couple month period, then I went home with an event monitor for a month, which after that they download the info from the monitor in the cardiologist office. I still show Prolong QT, so I go home with their directions and about month later I started to pass out again?! I go to the ER again, admitted again, as my blood sugar was extremely low!! Along with my electrolytes being low again. UGH!! So now I'm having surgery having a heart monitor implanted in the left side of my chest. Which is called a loop monitor and I go in and have the info downloaded every month. To watch me more closely. So, with everything the docs had to take some of my migraine PNR meds away, which is hard to deal with. Because now I have them more frequently, but it's better than sudden cardiac death. They took me off of Topamax, Nortriptyline, Flexeril, and Phenagren. Excuse the spelling on this! So basically anything that suppressed my CNS which is my Central Nervous System. As if it is compromised I will/could pass out, an just not wake up so it's very scary!! Sorry so long I just want to be able to help anyone out there who's suffering too!! But most of my days are balled up in pain all day!! More so since they had to take away some of my meds. Ugh. I hope this helps anyone out there!! Thanks for your support as I will continue to support you as we'll. here is my email. aphongsavat@yahoo.com if anyone wants to communicate that way too. Thank you ladies and god bless you all!! ππππππ
Jun 11Reply
jwielch
I hear you honey. I used to think I was just crazy! Constant pin, fatigue, foggy...
Jun 14Reply
hilary78
I was officially diagnosed with FMS & Chronic Fatigue almost two years ago now at the age of 32 after a lifetime if chronic illnesses. I was living in San Francisco, CA alone & had to move back home to Elk Grove, CA with my parents. I'm unable to work & am working with an attorney to get Social Security. The only thing that has gotten me through is my relationship with Jesus Christ. He is my strength when I have none, my comfort when I need someone who understands exactly how I feel & my hope when I feel hopeless. Thank you for posting this & I will keep all my fellow FMS sufferers in my prayers. God bless you all!
Jun 15Reply
jakeamom12
@hilary78 thank you for liking this post and joining our little group!!! We are here for you in any way you need!!! I will keep you in my prayers and good luck with disability! It takes a while and patience but you will get there!! Gentle hugsππππ
Jun 15Reply
hilary78
I'm already through my second appeal & hired an attorney for my third. It's hard to get at age 34! Thanks for the encouragement! It does take patience!
Jun 15Reply
jakeamom12
@hilary78 yes it is,but I was 34 when I got it!! So it's possible and now that Fibro actually has its own diagnosis code now it's gotten easier!!! Hang in there!πππππ
Jun 15Reply
shooiesbaby
@jakeamom12 I LOVE these! So many people just don't understand!
Jun 15Reply
jjaquess
It's awful. My mom & I both have it. Thank you for this. β€
Jun 15Reply
jakeamom12
@jjaquess yes it is!! My son and I both have itπππ nice to meet you!! Gentle hugsππππ
Jun 15Reply
jjaquess
Same to you. I also have a type of inflammatory arthritis similar to RA. Sucks. It consumes so much of my life I feel like.
Jun 15Reply
jjaquess
Same to you. I also have a type of inflammatory arthritis similar to RA. Sucks. It consumes so much of my life I feel like.
Jun 15Reply
mswhite56
@ericka_c
Jun 16Reply
mswhite56
@kelly2469
Jun 16Reply
rangela85
@jakeamom12 πI have had fibro since 1993. It is so difficult to explain what it does to you to others. You'll never know unless you have it yourself. The mental stress is so bad because your brain is constantly trying to overcome. I wish you well and many sells here on poshmark.
Jun 17Reply
jakeamom12
@rangela85 nice to meet you!! Thank you for the kind words!! There are many wonderful women who suffer from Fibro on posh! I hope you find this group a place of comfort! We are all here for each other!!! Gentle hugs,Traciπππππ
Jun 17Reply
rangela85
@jakeamom12 π¬oops... Posted before I was finished. Can I blame fibro fog on that, lol. I just pray that one day they find out exactly what causes this and there will be relief for all those who live with this. God bless you!!! Glad to share your closet. ππ
Jun 17Reply
hburkett12
@jakeamom12 yes. I suffer from this awful disease as well! So awful! So does my Mom! How I pray they find a cure for this debilitating disease!! God bless you!
Jun 17Reply
reneeanderson
Hi traciπTy for sharing my closet the last couple of days! How are you doing this week? I have been on vacation the last week or so and really enjoying my family and relaxation... The only thing wrong with vacations is the temptation to eat really bad ! Lol! So although my mind is well I have played havoc on my my muscles bc of the sugar! I swear its the π! Been praying for everyone one this blog and trying to remember I am not the only one in this boat that feels like it is slowly sinking. As I read all these blogs some days I realize how much it means to everyone to have a place to just vent and share. Sometimes this disorder can be very lonely... Especially when you are single and have gone through relationships that don't work out bc of the baggage that comes along with this condition. Maybe one day I will find the one! Hope you are able to sleep lately and feeling a bit better! Neπ»
Jun 20Reply
jakeamom12
@reneeanderson I am glad that you are relaxing!!! I truly believe God will bring the right person into your life when it is time,is keep the faith!!! I have not been well the last week or soππ financial stress has played havoc on my body and now my liver is flaring making everything twice as bad!! But I know that it will pass eventually! Gotta stay strong for my family!!! Gentle hugs, Traciππππ
Jun 20Reply
reneeanderson
@5kewlklosets hey girl! I so feel your pain theses last couple of weeks! I'm so sick of meds!!! I feel like they are my best friend and worst enemy at the same time! Thinking of you tonight !
Jun 20Reply
reneeanderson
Ty Traci! Special prayers for you tonight!!! Ty I know... Been in and out of relationships for the last 20 yrs and know I need to do this on my own for awhile. I am so lucky to have my kids and family! They do keep me going. so glad to be out of work for the summer also. God gave me a better job this yr so I could survive and I have a lot to be thankful for... Hang in there too... I believe we all have to keep our faith to get through the pain! sleep well my friend!π
Jun 20Reply
jakeamom12
@leasuretime143 our stories are similar! I have Fibro, liver disease, Ehlers Danlos , spinal stenosis, failed back surgery, sciatica and spinal stenosis. I too had a spinal fusion and during one of my three back surgeries the doctor knocked my spinal cord leaving me with damage and numbness in my groin area including my bladder. All this by the time I was 33 yrs old! I felt like I had lost my life!!! It was really hard and still can be!! In the past 6 months I found out I have liver disease and had to come off most of my meds and there is nothing I can do for the pain, it's also put us in a financial bind because of te medical bills. I try to stay positive and lean on my family and most importantly The Lord!! I will not let this mess take my life!!! My motto is " If God brings you to it, he'll bring you through it"! It is nice to meet you and feel free to tag me anytime! Gentle hugs, Traciπππππ
Jun 20Reply
5kewlklosets
@reneeanderson counting down until my appt with specialist!!!! Can't come soon enough. Ugh!!!! Ill keep in touch. Working thru it as much as possible...
Jun 20Reply
dominique1031
@jakeamom12 Hi. I have Fibromyalgia. I was diagnosed at 35, I'm 39 now and it just gets progressively worse. I was contemplating ECT treatment to get my brain firing correctly so maybe it would rearrange the pain signals and nerve endings. That's how desperate I've become but I'd need to see a neurologist for that. Yes, 4 years of this disease is enough for me. Just to touch my arm with your finger causes pain because of the sensitivity. I wasn't aware there was a Day for it. That's awesome
Jun 21Reply
jakeamom12
@dominique1031 it's nice to meet you!! I am so sorry you have to suffer with this disease!! I have never heard of this treatment you're talking about!! Would love to know more!!! If you ever need to talk there are lots of us here that would live to give you support! Gentle hugs Traciπππππ
Jun 21Reply
ziggyray
Hi! I too suffer with FMS and CFS. I am performing my PhD research FMS and a type of grief called chronic sorrow, also known as living losses. It's a type of grieving that means a person mourns with each new loss or missed milestone due to the effects of their illness, or due to some sort of self loss that continues; not just one grief process or episode. Anyway, it is indeed a huge struggle to do this with my illness, but that's all the more reason to do it. We need research to continue not just the physiological aspects, but also the psychosocial, grief and change of life issues. Kudos to your outreach work!
Jun 23Reply
jakeamom12
@ziggyray nice to meet you!! Thanks for all your research!! I have grieved a lot over missing many milestones in my families life,especially my sons!!! Thank you for all you do! Gentle hugs,Traci
Jun 23Reply
ziggyray
Lol! Gentle hugs indeed; still laughing. How do all of you ladies create the shots with text only on your pages?
Jun 23Reply
jakeamom12
@ziggyray someone on a Fibro support group used that phrase and I though it was cute!!! I use an app called instacollage!
Jun 23Reply
ziggyray
I will get that app. So it allows you to put the image into your photos so you can upload here?
Jun 23Reply
jakeamom12
@ziggyray it will let you upload pics and then you can write text,add pics from their library, put a frame on etc!!
Jun 23Reply
ziggyray
Thanks!!πΊ
Jun 23Reply
shoplovelea
I have this too. Well, my doctor won't diagnose me because I'm only 22, and she just keeps saying I'm "too stressed" and if I'd "calm down for a little bit" I'd get ALL better! But I've been dealing with this chronic pain as long as I can remember. And we've done almost every test imaginable and everything has come back fine. I've had a few doctors tell me that "everything looks great, so I don't have to worry anymore, I'm fine!" And I'm like, well, I'm still in pain, so... I just feel like no one takes me seriously.
Jun 24Reply
jakeamom12
@meganscloset21 nice to meet you!! I'm sorry you are going through this, my son is 22 and has it too!! You need to find a new doctor!!! One who believes in Fibro!!! I too have had it probably since my teens,but back then there was no such thing! I was called lazy and a hypochondriac!! My parents sent me to counselor s,psychiatrists etc thinking I was just a lazy,bad teen!! It was no fun!! I hope you can find someone in your area to help you!! I'm hear if you need anything! Traci ππππ
Jun 24Reply
marze
God bless all of us and help cure our pains!! :) God bless
Jun 24Reply
jakeamom12
@marze πΊππππ
Jun 24Reply
judythecutie
@jakeamom12 WOW THIS BLEW ME AWAY !!! I've been suffering for 16 yrs now and it's horrible π for me going to bed is the worst ... No comfort zone.... so sorry to hear about all ur pain I truly understand and relate ... I wish u all abit of comfort πthx for sharing .... God Bless
Jun 25Reply
jakeamom12
@bubblymonika I'm so sorry she has to deal with this,especially without meds!! It can be awful,she is in my prayers. Nice to meet you,Traciππππ
Jun 28Reply
joe3angie
@jakeamom12 I knew I love you for a reason lol!! I too suffer from fibro. Finally diagnosed in 2004, previous 6 years from that misdiagnosed with MS! Always a difficult road, but it also makes us stronger. That's why I love Posh because I love to shop and this gives me the opportunity to do that even when I don't feel well. Gentle hugs!!πππ
Jun 29Reply
jakeamom12
@joe3angie gentle hugs to you too!! They are testing me for ms next month!!! Pray that I don't have it!!!πππππ
Jun 29Reply
joe3angie
@jakeamom12 Me too!! I'm here for you if you need me. You can ask me anything, anytime!!πππ
Jun 29Reply
sutha
Thank for sharing hun
Jun 29Reply
rangela85
@bilek πhere you go. I left out the 12,lol.
Jul 03Reply
reneeanderson
UGGG!!! Can't sleep!! Bad last two days with severe migraine that keeps returning! So tired of losing days of my life to this!!! And having to be in bed has caused my fibro act up because I'm not moving around! Just needed to vent π©I hope you all have a great 4th! Hopefully I can go back to sleep and it will be better so I can enjoy my holiday! Lots of lots prayers to all of my fellow warriors! Neππππ
Jul 04Reply
sherrilynn66
I have had this disease for 10 years. I have been in a wheelchair, walker than I have used a cane, been to rehab for being over medicated have been in and out of the hospital for related issues, gained weight trying to take the Fybromyalgia medications that only made things worse, bankrupted my family because I couldn't work and my husband would do anything to seek alternate treatments other than narcotics and the sad list goes in and on! I have literally aged in the last 4 years right before my eyes. It is the most unforgiving and ruthless thing that has ever happened to me in my life. I totally get where you are coming from. I refuse to live this life though and so even though I live with pain everyday I will not let it take the happiness away from me! I have tried and been on every combo of drugs and every holistic option but I will say that the things that seem to help the most cost no money.... Sleep, meditation, trying to relax and find the joy in things, not gossiping avoid extra stress and breathing have been the best things that I have found! Good luck to you and I hope you can find some peace of your own!!!
Jul 21Reply
jakeamom12
@sherrilynn66 very well said!!! Nice to meet you! Your story sounds almost exactly like mine!!! Gentle hugs Traciπππππ
Jul 21Reply
craftygirl
It's nice to see that other people are dealing with this (not that you guys are pain, but that I'm not alone). I am a college student and I have been dealing with this for years. I was a musician, but it hurt to much to play so I had to quit and change my major. It has brought my life to a complete stop and it's very difficult....
Jul 22Reply
craftygirl
@5kewlklosets @cherryblast I don't normally post personal stuff but I live about an hour away from Ann Arbor! It's such a small world!
Jul 22Reply
5kewlklosets
@craftygirl cool!! Do u go to u of m medical also?
Jul 22Reply
cherryblast
@craftygirl oh wow it is a small world. I am totally understanding this awful horrific disease. it is no fu to live with, so I pray a lot and keep positive ppl around me. I found if IM around negative-chronic complainers it brings me down keep in touch please. I'd love to have someone who understands completely without explaining.
Jul 22Reply
southernstyle88
@jakeamom12 Nice of you to make this Traci. I'll come back to this & talk about everything going on with me. Thanks so much for making everyone more aware of this horrible disease! @tinker_bell I hope you're feeling a little better by now. Been praying for you, along with every name I came across when I read their listing. May God Bless you all.
Jul 23Reply
craftygirl
I do go to U of M medical on occasion. It so hard dealing with this, especially when I'm away at school. Sometimes I just get so lost on what to do because win in pain all of the time and none of my friends or family understand. It gets really lonely
Jul 23Reply
cherryblast
@craftygirl where do you go to school at? My daughter just graduated from Western Mi. in Kalamazoo, and just got married.
Jul 27Reply
craftygirl
Aww that's great for her! I'm a student at Michigan State, and I'm studying elementary Ed
Jul 27Reply
craftygirl
@cherryblast forgot to tag you in the previous comment π
Jul 27Reply
amberjay123
My mother was just recently diagnosed with this. More people need to be aware of this.
Jul 27Reply
cherryblast
thats awesome, @craftygirl good luck on school. I hope this damn disease doesn't hold you back like it has me. I wish i could start over and not let it have taken over my life. I am now too old to start over, and its so depressing. Keep yourself happy and don't let anything get ya down.
Jul 27Reply
craftygirl
@cherryblast I'm really struggling right now....I'm questioning whether I'm going to be able to handle going to school this year because I just keep getting worse. I'm so terrified it is going to screw everything up. I was a musician and I planned on majoring in music Ed, but it got so bad I couldn't even play anymore, so I had to change majors. It wasn't too bad that I had to change, because I absolutely love kids. But I haven't found anything that relieves the pain and I'm on so many different medications, yet they do nothing. My only wish in life is that I could be normal and not have to deal with this. It's amazing that so many people can overcome the pain and everything but I'm just stuck in this vicious cycle, and I don't know if I can get out. I absolutely love State, and it is where I'm meant to be right now, but I can barely function right now...
Jul 27Reply
jakeamom12
@craftygirl just remember you're not alone!!! They're are a lot of us out there struggling just like you and we are here for youππππthe pain just woke me up after only two hours of sleep and I won't go back to sleep for hours! I've recently started having problems once again with my pain meds(that hardly work) wearing off way before I can take more and my body has started craving more so I've started having DT's! Thank goodness I have pain management next week! Try to stay positive and don't let this monster beat you!!! I'm here if you ever need to talk! Love Traciππππππ
Jul 27Reply
craftygirl
@jakeamom12 do you mind me asking what you do to deal with the pain? I only get about 2 hours of sleep a night because I am in too much pain to sleep. The rest of the time I'm like half awake and can't think straight. I've even gone to the ER, and they have me morphine and it didn't even put a dent in the pain. I haven't found anything that works... Thank you for letting me talk, and being here for me
Jul 27Reply
jakeamom12
@craftygirl sometimes I don't know how I get through it!! I do know I pray a lot and ask The Lord to get me through! Without my relationship with him, I'd of given up a long time ago! You have to dig deep and try to keep a positive attitude! Believe me it's easier said than done! I went through several years when I was first diagnosed in a deep deep depression. In so much pain from Fibro and from my back, I never even left the house! I missed out on three years of my sons life and being with my family. I finally decided I wasn't going to let Fibro rob me of my life and decided to push through! I started going to pool therapy and also seeing a psychiatrist and pain management doctor. It took over a year to find the right combo of meds and they have to be tweaked every so often. Last year I found out I have liver disease and all the meds I was on for fibro(Savella,Lyrica,Cymbalta,Percocet etc) I could no longer take! I was devastated! Now I'm on Methadone, Lexapro , Valium, Flexeril and I get a Toradol shot every six weeks. It's not as a good but I don't have a choice!! I still have bouts of really bad flares that last from a couple days to a couple months that put me to bed, but on normal days my pain level is a 6 and I try to make the best of it! The chronic fatigue seems to be getting worse! It's awful to be so tired you can't even sleep! They say exercise is supposed to hel,but I haven't seen that to be true! I also have a damaged sciatic nerve from back surgery gone wrong,so that hurts 24 hrs a day and my leg doesn't always work like its supposed too! I used to have to walk with a walker(sometimes in the winter I still do) but pool therapy has helped with that. If you need a break from the pain try to find a therapy pool where the water stays about 92 degrees and just submerge yourself! The water will take the pain away! Hopefully this week the pain doc is going to finally ok a pain pump, which means they will implant a pump under my skin that will automatically disperse pain medicine. I think everybody's journey with Fibro is different and you have to keep trying until u find the right combo for you! You have to come to terms with the fact that the pain isn't going away and that you're not going to let it rob you of your life, positivity makes a big difference! I know for myself it took a lot of soul searching and just digging deep within me to find the srength. My faith really got me through! You also need a good support team! Mine is not the best and it is hard for them to understand, but they mostly try! My sister and son were both just diagnosed with it, so there's been a little more understanding! Like I said it doesn't happen over night and I struggled the first three to five years after I was diagnosed and still have bouts of it,but I'm determined not to let it take my life from me!!! Some days that's really hard to do and having others who know what you're going through to talk with helps!!! All I can say is NEVER give up and try not to let it rob you from doing what you love,just try to find a way to do it in a way that you can manage! I know I've rambled,but I hope I helped in some way! I'm here anytime,even just to listenππ
Jul 27Reply
craftygirl
@jakeamom12 no you didn't ramble! I really appreciate knowing this since I'm still pretty young and the doctors still aren't really sure what's going on. They say its fibro, but I think that's because they've just given up and no one can find out what's wrong. I really appreciate this group/page because no one at home understands and I'm really alone at times. Thank you so much for the info π
Jul 27Reply
jakeamom12
@craftygirl yes finding a doc who believes in Fibro and has enough knowledge about it can be hard!! I went through 5 or 6!!! I finally found a group of docs who specialize in Fibro and it's been FANTASTIC!! Do you have Sheltering Arms rehab clinics in your area??? That's where I go!!! Do some research and try to find a place that specializes in Fibro. They will usually have pain docs who do nothing but Fibro, psychiatry,physical therapy and occupational therapy. They will also help you through the disability process if it gets that far!! They will also have you tested and rule out any other diseases that have the same symptoms as Fibro! NEVER let them or yourself get to the point that everytime you get sick or have new problems blame it on the Fibro,because you could ignore something you shouldn't! That's what happened with my liver, I kept ignoring the symptoms and blaming it on the Fibro and almost let it go too far! If I had had it checked earlier I may not be in the mess I'm in!! You need to also insist that you get bloodwork every six months to check all your levels because pain meds can wreak havoc on your body and things like low vit D, thyroid,iron etc can make your pain and fatigue worse. If you have a good doc they will keep up with all this! I see my Fibro doc every 4 months. NEVER blame any new symptoms on Fibro always have it checked out and don't let the docs do it either or make you feel like a hypochondriac!!! You have to be your own advocate!!its your body and your life,not theirs! Only you know when something doesn't feel right!!! I've been really lucky to find a group of docs that are supportive and listen too me and never become complacent even when I do!! They've actually fussed at me about blaming things on Fibro when I shouldn't have!! I've made myself really sick several times doing that!! Anyways, make sure they rule out things like MS and rheumatoid arthritis before just diagnosing Fibro! Fibro won't kill you( it may feel like it) other diseases will!! Also educate yourself as much as you can! It helps you stand up to the hard headed docsππ
Jul 27Reply
deenanelson
Oh wow, thank you Traci @jakeamom12 for recommending your page. I wish I could tag everyone that I just read about but if I tried to do that, my lack of sleep and Fibro fog would have me here still working on that list days from now π haha! Well, let me start by saying I have seen myself in everyone of you wonderful ladies and it is fantastic to meet you all and not feel so alone with this dreaded disease. Just to compare meds for those who are interested, I take methadone for the last 10 years and just changed to oxycodone instead of norco for break through pain. I also take Savella which has been a miracle drug for me which I have read has not been the case for everyone, it really helps me but I have to stretch my Rx to make it last because I have no Rx coverage. I also take Flexeril for muscle spasms and have tried every sleeping pill out there and I end up walking around and falling and hurting myself. I have cooked, tried to clean, evem tried to get in my truck and drive, among other crazy things while taking sleeping aides. I've done everything but sleep on those darn pillsπ lol! I've been diagnosed since 2000 and its been a bumpy road for sure. I have a hubby who tries to understand and a daughter who I think has this dressed disease also at 23. I'm so grateful to have been asked to join this Fibro family butt would gladly give any of you up if it meant you would no longer hurt!
I also want to list my diagnoses also so they might help some here since we all seem to have way to much in commonπ! I have been diagnosed with the fibromyalgia of course, degenerative disc disease, I have crushed vertebrae in my thoracic, lumbar, and neck. I have been hurting like this it seems since I was injured with a broken back from a car accident at 17 that was not found till 19 because no one could figure out what was wrong with me, diabetes, anemia, under active thyroid, and other ailments I'm just to sleepy to list lol! .
Well I need to end this for now. I have rambled on long enough. But lastly I would like to say, it is a absolute pleasure to meet each and every one of you and Traci this was a awesome idea! Soft gentile hugs to you all! ππππππ they need to create a purple ribbon emoticon β¬
spelling?lol
Oh well!!! Once again, Soft and gentle hugs to all!!! πππππππDeena
Aug 06Reply
ozmagram
@jakeamom12 I too have it and have suffered for almost 20 years. Since my diagnosis they've come along ways. Though there's only so much they can do to help. I hope someday that others will understand and not look at me like its all in my head. Or that I'm being lazy. Even some dr.s don't believe and can be very rude and judgemental. Hang in there, cherish what we do have.
Aug 21Reply
jakeamom12
@ozmagram so nice to meet you!!! I know what you mean about people thinking its all in my head!! Even as a teenager,before Fibro was a word, I was called a lazy kid,hypochondriac etc. my parents even put me in counseling!!! I was so lad to finally atleast be able to say to all those people, I told you I wasn't lazy, I really do have something wrong with me!
Aug 21Reply
dietpepsi99
Hi,let me start by saying I don't think I have Fibro yet but I have pretty much everything else! I started out with cancer which went into remission after a few grueling years. Who knew that for the rest of my life I would be living in constant pain and side effects from the chemo and radiation. I now have Reflex Sympathetic Dystrophy in both legs and feet,also my arm. RSD is an extremely painful disease which there is no cure for. I also have spondylitis of my spine. I could keep on listing but we would be here for a long time!! Suffice it to say that I live on a constant roller coaster of pain. The lowest I can ever get it is a five and that is with a lot of medicine. Which is another topic all of its own!!
To all of you going through any kind of pain,I am with you. If you ever need anyone to talk to I'm here. I'm up all kinds of crazy hours because of the sleeping issues so don't worry about the time. I would love to be able to give support to anyone I can. I hope everyone has a pain free,light filled, Blessed day!
Aug 22Reply
jakeamom12
@dietpepsi99 so nice t meet you!!! Always know I am here to talk too,I am up all times of the night too!!!πππ
Aug 22Reply
lizhar
My heart goes out to u for sure doll!!! Up until a few years ago they didn't even have a name for your disease. & SO MANY ppl were forced to suffer in silence. I don't personally have it myself. I have a long list of chronic health issues that can really leave u feeling all alone in your fight just like I'm sure you feel daily also. I've met quite a few Poshers that share our pain also. There is one woman who has inspired me beyond belief. She has an amazing way to help ppl feel better without even knowing she's doing it. You should stop by her closet and read her listing called "Get those mammies grammed". Her screen name is @jefsweetie. I would love to make myself avail to you if you need and ear to hear you. My email is Beth@pink-lizzy.com. I would just like to encourage u to introduce yourself to @jefsweetie & I promise you will not be disappointed. I'm pretty sure that I'm quite a bit older than she is but she has taught me so many things & inspired me to lift myself up to be a better person that is already inside me. She has a gift of helping u find that better person that is in all of us!!! I hope you will use my emails soon bcuz I'd love to hear from you soon. πππ
Aug 23Reply
supermom0624
I have Lupus, Fibromyalgia, Hashimoto's Thyroiditis, and Orbital Inflammatory Pseudo Tumor. As well as 2 rods, 1plate, 6 screws in my lower lumbar. And a dorsal column stimulator for perm nerve damage from the waist down. I'm so sorry to hear about you're struggles however GOD will not put on u more than u can handle! I promise u that! π β€ ya and God Bless!!!
Sep 05Reply
jakeamom12
@supermom0624 wow!! You sure are a super mom!! It's nice to meet you! I'm trying to take my pain doc into a pain pump now for sciatic nerve damage, but no luck so far! I'm having a terrible time with my live right now too and the steroids thy have me on are making me twice a miserable and grumpy! If you ever need to talk at need support please tag me! Gentle hugs Traciππππ
Sep 05Reply
jakeamom12
@karamel68 @hilary78 here are many more posh gals who also have FMS, thought you'd like to meet!ππππ
Dec 29Reply
karamel68
Hello Poshers sending soft hugs
Dec 30Reply
jakeamom12
@primandproper...here are some great ladies! When you have time follow them and introduce yourself! You unfortunately have to do each one individuallyπ
Jan 25Reply
jakeamom12
@eyepurple lots of great women in this postβ€οΈβ€οΈβ€οΈ
Feb 01Reply
eyepurple
@jakeamom12 Thank you. I appreciate the input. I have done allot of those things. Joined online support groups seeking out individuals who have had a similar experience ... So important . Glad to meet you and same to you here if you need to vent! ππ
Feb 01Reply
jakeamom12
@jade1003 I started this post a while back! It's for posh women who suffer with Chronic illness! Please feel free to like this post and tag any of these women for supportπππ
Feb 02Reply
jade1003
GOT UR MESSAGEβββ THANK U.IM READING COMMENTS ...ALL SOUND LIKE ME.STARTED 4 YEARS AGO AND 14 DRS LATer im still getting different diagnosis BEEN CALLED DEPTESSED. OF COURSE MY LIFE CHANGED DRASTICALLY.IVE BEEN SAID TO HAVE .. MS..LUPUS..SWINE FLU..NUEROPATHY. THAT TIC DISEASE..DEPRESSION.I CAN gO ON .AND ON.IM ON METHODone NOW YUP PEOPLE THINK IM A HEROINE ADDICT LOL AND VALIUM. CYMBALTA GOT ME MORE DEPRESSED THAN I Waz. I'm up every night on and
off all night
stopped working a job I'd had since 1994 got disability which is a comfortable amount thk god for my job career all those years. divorced recently which is y I think I have this some xs.. sounds dumb but years of physical abuse' and verbal and emotional? as we speak my wrists knuckles toes ankles shoulder blades blah blah blah r killing me. I don't think methadone works that good. It works but it gets me wired and I'm up 24 hours aday. I'd love to go on but need to get my ass moving slowly ha! I will b sure to peek from now on and hopefully learn and befriend as we get use to our own Lil pain bubble..we forget domes how life use to beβ‘β‘β‘β‘β‘β‘β‘β‘
Feb 02Reply
jakeamom12
@jade1003 I am on methadone and the fentanyl patch and that seems to do better than just methadone,but yes people do look at me like I'm a drug user! I also have a muscle relaxer Diazepam for really bad days. Keep your head up and stay strong! Research and find a good Fibro pain management doc in your area! It makes all the difference!
Feb 02Reply
jakeamom12
@smwitham here is a wonderful group of ladies who have Fibro and other chronic pain disease! Feel free to like this and follow as many ladies as you like! It's like a big family support systemππππ
Mar 26Reply
jakeamom12
@smwitham I agree! πππ
Mar 26Reply
jakeamom12
@valorieann @ringleader @karamel68 @roxygirl1 @linmp1031 @njoylife @keenziestuff ππππ
Apr 25Reply
abstractdreams
Thx for the tag! π Do you mind if I borrow to post? I only have Fibrogirl & would like to have more...π
Apr 25Reply
jakeamom12
@linmp1031 of course! Hope you doing ok today!πππ
Apr 25Reply
abstractdreams
Thx! Not so good actually. It's cold & rainy here today & added to that are all the fractures from my fall in Feb. and...the fact that I finally started PT on Wed.! π I was sitting here hugging a cup of hot tea! βοΈ I'm prolly gonna take a hot shower followed by a nap! Hope you're feeling well today. *This post is a good idea! I know from my years doing support/education that so many people feel isolated & alone on this journey!
Apr 25Reply
jakeamom12
@linmp1031 I'm sorry you're not feeling well! Praying for you! I know his you feel, I was diagnosed Tuesday with sacroiliac joint syndrome and have to have an epidural injection in my joint and hip on May 7! The pain is awful and has sent me into a flare! Then I will start pool therapy,but look like I may have back surgery in my future ππππ
Apr 25Reply
abstractdreams
You'll be in my heart & prayers. π
Apr 25Reply
stephaniamaria
I have fibro
Apr 25Reply
jakeamom12
@stephaniamaria nice to meet you! I'm sorry you have to deal with this ugly disease! Please feel free to reach out anytime you need! I know that sometimes it's nice to talk to someone who knows what you're going through! Are you new to posh? Gentle hugs Traciππππ
Apr 25Reply
51twenty
@myfashionkloset
Apr 26Reply
ashleem45
Wow. I am so glad that I came by this post. We believe that my grandma has fibromyalgia, but nobody can really tell the extent of it, because obviously it can't be SEEN with your eyes. She just always hurts and can't really even explain why! The doctors took YEARS to figure it out and my family still struggles with the fact. She is in a lot of pain A LOT of the time therefore she becomes very depressed at times so people just look at her like she's a weak, whiny person for feeling that way! I will be showing this to my whole family, so that we can have a discussion about it, to understand it better, that way we can help her deal with it and be her support system! Again, thank you so very much for this post. I would like to add you to my church's prayer list, that way you'll always have a HUGE group of prayer warriors! π
Apr 26Reply
justjessi
@jakeamom12 thank you for posting this. ππ π#xojessi
Apr 27Reply
jakeamom12
@justjessi ππππdo you have Fibro ??
Apr 27Reply
justjessi
@jakeamom12 YESβΌοΈbeen battling Fybro for 20 yearsβΌοΈ it is such a confusing & defeating disease most times, but I have had some luck lately. I also have a slew of other issues on top of Fybro, Bi-Polar, PTSD, migraines, nerve damage....,but, alas, I am mom to five kiddos, so here I am, but by the grace of God, still "in it to win it"βΌοΈ I will tag you in a post to read a procedure another Posher told me offered her some relief. ππ π#xojessi
Apr 27Reply
jakeamom12
@justjessi nice to meet you! Thank you for the info, I will talk to my doc about it! I've been trying to get them to put a pain pump in but with no luck! I have liver disease partly from chronic use of meds and the pump is not supposed to effect your liver! There was also an article in USA today that they have finally concluded that it's an auto immune disease as well as a neuropathy fiber disease( duh,most who have it already knew that)and that immunoglobulin treatments through if are also working! I'm glad they are finally starting to find some answers! I also suffer from degenerative disc disease( three back surgeries), liver disease,sacroiliac joint dysfunction, sciatic nerve damage,hemochromatosis( blood disorder I have Iron surges(flares) where I produce too much iron) and all the things that go with Fibro! Gentle Hugs Traciπππ
Apr 27Reply
soblessed
@jakeamom12 hi glad to meet you I have been suffering with fibromyalgia for almost 12 years it does suck I have chronic pain so bad I have to get pain shots as well as pain meds and prayer but I have many ppl by my side
Apr 29Reply
jakeamom12
@soblessed hi Tammie! I've had Fibro for about that long too! It can be an awful illness! I get a Toradol shot every four weeks along with several daily medications and some days it's just not enough! I know what you're going through! Gentle hugs,TraciππππI'm here if you ever need anything!
Apr 29Reply
soblessed
@jakeamom12 that's the name of the shot I get I go may 1 for one it helps a lot I hate this but we will get through it I bought a book about the disease to educate myself I learned to bear with it cause some days I don't want to get out of bed also what is may 12 I haven't heard of that is that local awareness
Apr 29Reply
jakeamom12
@soblessed may 12 is Fibro Awareness day! As far as I know it's national! I found out about it because I joined The national Fibromyalgia Association on Facebook! They have lots of great info! I also joined a great support group on Facebook called Fibro Healing Hearts!
Apr 29Reply
soblessed
@jakeamom12 thank you sooooo much for the info I'm goin check it out πΉπalso thank you for sharing and following me
Apr 29Reply
here4looks77
I have it! I'm 57, diagnosed last year at Northwestern in Chicago. Let's stay in touchπβ€οΈ
Apr 30Reply
jakeamom12
Hi Madonna! Nice to meet you! I would love to stay in touch! Gentle hugs, Traciπππ
Apr 30Reply
megan_luvsya_xp
My sister is believed to have it. We have tried everything, and she still in chronic pain due to her depression. No one seems to understand how bad it is, and I just feel so bad for her since no one believes her. Some people just think she is lying to get out of things. I wish someone would just find a cure. I hate to see her suffer everyday. Plus she is only 13. :(
Apr 30Reply
jakeamom12
@megan_luvsya_xp it's a hard thing we all deal with, I'm sorry she's going through it at such a young age. They think I had it at her age,but 30 yrs ago there was no such thing and I was just labelled a lazy child,so I know how she feels! Your sister and your family are in my prayersπππππ
Apr 30Reply
megan_luvsya_xp
@jakeamom12 Thanks so much. I really appreciate your post. It's really important that we get the word out there! β€οΈ
Apr 30Reply
patepies
@jakeamom I do not remember if i wrote that I was diagnosed 31 years ago when it was a brand new disease. They are now finding out it is a symptom of Barr Epstein. I have gone through what ya all have and as a psych. have seen others as well. I found out the only way to keep going is to keep going!!!!!! AND remember no one can ever tell you how to feel!!!!!!! You do what you can do and make apologies to no one.
May 03Reply
wer4cats
Thanks for drawing awareness! I have been fighting fibromyalgia for 13 years! Gentle hugs to you!
May 04Reply
jakeamom12
@wer4cats gentle hugs back at ya!πππππ
May 04Reply
indigopuffin
@jakeamom12 thanks for posting this. I have suffered terribly since 1994; I've been in hospital for weeks at a time unable to walk or stand, hooked up to bags for waste elimination because nothing was working. I had a stroke at 29 from the detriment on my immune system, and again about two years ago resulting in a lesion on my brain affecting my speech, balance and memory. AWARENESS is SO important and I am so proud of you for posting this. πTHANK YOU
May 05Reply
jakeamom12
@indigopuffin I'm so sorry what this awful disease has done to you! I swear it can take your whole life away! I just try my best to stay positive and if I didn't have faith in The Lord I wouldn't make it sometimes! Please feel free to reach out anytime to talk! I know it's nice to have someone who understands to talk too! I'm in Virginia,but my hubby and I are big Tarheel fans! He's from NC, his family is in a little town called Mebane! His whole family including my son are Duke fans, so basketball season is lots of fun! Gentle hugs Traciππππ
May 05Reply
indigopuffin
@jakeamom12 thank you for your support! Sounds like you need mine too! I have family all over NC mainly Greensboro supposed to be there later this summer
May 05Reply
indigopuffin
@jakeamom12 by the way... You are my sharing πtoday!
May 05Reply
kate777
I have friends who endure this- ππΊπpraying for you!!π·π
May 05Reply
jenangel89
I'm so sorry you have to go through this. You just have to hang in there each day. I went through a period of time where doctors couldn't figure out what was wrong with me and people though i just had bad anxiety but I was treated for Lyme disease after being around ticks in the woods. Not sure what it really was.. But I understand. You have my support! One day at a time! You can do it!:)
May 13Reply
soblessed
@jakeamom12 hey how are you fibramialgia buddy I'm having a painful day I have been educated people about this horrible enemy of ours just wanted to stop by and say hi told my friend I met you on posh that suffer with the same thing How do you cope at times
Jun 01Reply
jakeamom12
@soblessed thanks for checking in! Doing ok, have a case of the shingles on my face and neck! OUCHIE! Sorry I haven't been so good about checking in! I hope you're doing ok! Gentle hugs,Traciππππ
Jun 01Reply
soblessed
@jakeamom12 aww get well my posh friend my name is
Tammie lol you called me traci π
Jun 01Reply
jakeamom12
@craftygirl if you read through this post, you will find many wonderful women!πππ
Jul 01Reply
jakeamom12
@bbyrd1951 I take Methadone for pain, Flexeril for muscle relaxer when needed, Toradol shot every 4 weeks for pain( wonder drug), diazepam and Cymbalta. I can't take Lyrica or Savella because I have liver disease from long term use of medicines with Tylenol and both of those can also effect your liver. Lyrica worked when I was on it, it was great but I gained 50lbs! Since I came off that nothing works as well.
Nov 09Reply
jakeamom12
@bbyrd1951 I try to stay away from the flexeril or only take half because it does the same for me! I think it's different for everyone and you just have to find the right combo of meds,but realize that the pain is never going to go all the way away. I cried when I had to come off all the meds that were working so well because of my liver. It's been rough finding another combo and it doesn't work as well.
Nov 09Reply
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