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I wanted to say "Hello" to everyone with Fibro. This is a tough thing to have. I also have RA and CFS along with it. Anyone else have multiple conditions? How do you cope?

From, Mary

Hello Mary:

I have fibro, OA, asthma, a cyst that has displaced the sciatic nerve root, opthalmic migraines (they think, but they're checking to be sure), diabetes type II and a few other assorted ailments.  I find a good sense of humor helps a lot

I take Elavil for the nerve pain, Flexeril for the muscle pain, Darvocet or Norco 5 when it gets severe, sometimes just so I can sleep, not because it takes the pain away, the pain meds really don't take it away anymore.  I sleep in the day because my body has always favored being up at night and it seems to hurt a little less if I do what my body wants. 

Deb

Hi Mary,

I have Fibro, RA, and a few other minor things going on.  I find that lately, I'm in pain no matter what I do.  My RA was in remission for awhile, but it's back as of 7/04.  Due to changes in insurance, I can no longer afford Dr. visits, or meds.  I have been taking ibuprofen and Tylenol Arthritis.  The Tylenol seems to take the edge off of the pain, but I find it's becoming more and more difficult to do things.  The joints just can't handle it.

As for coping, I just F.R.O.G.  "Fully Rely On God"  That's all that I can do at this point.

Cris

 

Hi:   I'm new here, It would be nice to talk to people who are in the same boat as me.  I Had heart surgery in April04 a stroke in Oct 04 have been diognosed with extessive OA, FM and Sleep apnea Blood Pressure is also a major concern. I took Celabrex for 2 years,Bextra for about 1 year right up to the day of my stroke. Now it's Tylenol Arthritis and noratryptaline and Meloxicam.plus lots of other neat stuff

 

Tks kath

I hope everyone is doing well !!

I am taking some Medical Leave of absence from work. Also, trying out the drug, Humira. I seem to have more energy. I can do housework and run errands. But, the pain is still there. On some days I need an afternoon nap. The pain is so frustrating !!

My brain says "Lets go and do stuff" but my body says "No way".

From,

Mary

Hi Mary! I have RA, OA, CFS, Fibro, MFPS, and am hypothyroid. I'm interested in chatting with others of multiple diagnoses. What meds are you on? When were you diagnosed? Take care.. Hi Mary - I have RA & Fibro and have been wondering how to tell if you have CFS as well.  It's so hard to know exactly what my fatigue is from, all I know is that I still have extreme fatigue in spite of all the meds (or because of them

I have to take a nap every afternoon, too. I get so tired !!

The pain seems to be worse when I'm tired.

From, Mary

 

I get very tired also, but find it hard to nap when I need to.  I'm usually in bed by about 8:30 though.  My body just can't go anymore after that time.

Cris

To Cris - I had a really hard time sleeping at night too (still do some nights) and tried a few things, and for me the Flexiril helps me to actually get some rest.  I still wake up from pain, etc., but it's less than I used to.  I was also taking Bextra...until it got yanked!  Hope  your rheumy can help you

My doc had me on Flexoril and/or Temazepam in the past, and they both worked wonders for me.  I'm hoping to get something that will work as well.  I really need the sleep.

Cris

Cris...
have you ever taken zanaflex? it seems a bit better for me at helping with sleep.  at least until i become tolerant to it.  most people say 4 mgs help them with sleep.  after almost 2 years on it though, i was at 20 mgs.  and still not sleeping properly.  but at first, i was getting such good sleep that my morning stiffness skyrocketed because i wasn't even tossing and turning in my sleep.  i toss and turn because of stiffness and after starting zanaflex, i slept great.  although one word of advice...never drink while on it.  other than the usual reasons of sleeping a little too well,  my reason for saying that is that the 2 times i had mixed drinks with a meal hours before bedtime and then took it at bedtime, i had crazy dreams.  really crazy vivid color dreams.  i don't remember them as much as i remember my hubby telling me what i talked about in my sleep.  it's just a thought on what may help.  others who have taken it, hated it because of how it made them feel.
hugs, wayney
I was diagnosed with RA 2004 and fibromyalgia soon after that. Im beginning to think they go together like salt and pepper or something like that   But when I explain my symptoms of fibromyalgia everyone elses is different.  When my fibromyalgia is flaring up my skin is soo sensitive it hurts to touch it. It feels like im bruised from head to toe and it hurts really badly. Does anyone else have these symptoms? I am on Elavil for this and methotrexate for the RA (i inject 1cc of metho into orange juice once a week) im on folic acid to keep the metho from making my hair fall out. im on lots of calcium pills, and prednisone (STILL) ive gained 40 lbs in a year because of the prednisone. and i have just started on enbrel. I was always healthy growing up im 35 now and now im afraid to catch a cold or anything like that.  karla,
that bruised feeling is the worst.   i hate it.  can't stand being touched.  nothing that i know to help it, just wanted to say, i'm with ya on that one. 
hugs, wayney

I haven't tried zanaflex wayney, but will mention it to my rheumy next week.  I don't drink, so that won't be a problem.  Tossing and turning is a big issue for me as well.  There is NO comfortable position that I've found.

Yeah, and I'm with you both on the "bruised feeling."  Right now it even hurts to wear socks, or anything for that matter!  Between the RA and the Fibro, I'm miserable.

Cris

 

HI Eveyone! 

I just thought I'd let you know what seems to work for me. I Live near Toronto and attended a Fybro. clinic as part of my diagnosis it has really helpd me alot. One thing seams apparant that fibro casn often be triggered by life events. LIke Ilness, Car accidents, trauma of any kind. Mine was diasg inNOv o4 after what was probably the worst year of my life. Heart surgery on April Extensived Osteo Arthritis in Sept04 and topped of with a stroke in Oct followed by Fybro and sleep apnea. Those two seam to really go hand in hand. Back in Nov. I felt bruised all over just sat around wondering if I was going crazy.Had to stop both my jobs

Bye Kathee1

PS: I'm only 49!!!!!!!!!

I know how you feel. Lately, I am in so much pain. I try to sleep, but can't get comfortable. I take Soma at night, but that isn't helping. I used to take Flexeril, but that eventually stopped working.

From, Mary

Hi all - i was diagnosed with fibro just 6 months ago ,   previous to that i saw a rhemtologist who did not say anything about firbro  just knew from blood tests that i did not have ra -   so he said oa - and kept giving me cortisone injections everytime i had an appointment - i was on bextra at that time as well.   In addition to firbro i have high blood pressue, ibs reynauds  and hypermobility. I am taking flexeril dialtizam ( blood pressure and reynauds) robinal ( ibs) and tramadol ( pain I think it is ultram)   I stopped taking the bexta when I was diagnosied with fibro. I have in the last year had my knee twist and was off work for 1 month then same knee just popped when i stood up and swelled ( it is the inside of the knee that keeps getting injured) then just last month i stood up from my chair at home and my left hip popped and the next morning i could nt  walk on that leg - an x-ray shows nothing and i just had an mri but will get the results of that monday moring when I see the orthopedist .   I am having terrible leg spams when i go to sleep and also when the pt puts in on the recumbant bike.  I am wondering if anyone else has this symptom with fibro?

Thanks Tanglust  muscle spasms are a part of fibro. 

I'm beginning to think I may have fibro. I think my sister may have this too. I have had RA most of my life but there have been things that just don't add up that. Things like the top of my head hurting, and my thighs feeling like they are always bruised, my 10-12 day long periods, sensitivty to light and sound, sinus problems that come and go, night sweats, etc.

Basically all the things on this list I have experienced in my lifetime: http://www.sover.net/~devstar/phsympt.htm

I thought these things were just 'me' and me being 'odd'. There's the fatigue from the RA and headaches which I contributed to enbrel. So I just chalked it up.

So what tipped you all off to make you or your doc think you had fibro? Also what type of doc would one see about this? primary care or rheumy?

I'm constantly fascinated by the things I learn on this board.

I was diagnosed with the Fibro first, by my primary care doc, who then sent me to a rheumy.  There were no signs at that time to point to the RA.  The rheumy confirmed the diagnosis, then did further exams for RA, which did turn up about a month later. So I continued to see the rheumy for both conditions.  My primary monitored me (blood tests and such because of meds), but I still saw the rheumy, who followed my progress.

I haven't been to a doc or taken meds for about two years now (financial concerns), but am going to a new rheumy this week, as the pain and stiffness have gotten almost unbearable.  I don't know where or how I'll pay for it, but I can't take it anymore. 

I would suggest telling your rheumy all of your symptoms, and ask them if there's a possibility it could be Fibro, as they tend to go hand-in-hand.

Good luck.

Cris

[QUOTE=wayney]karla,
that bruised feeling is the worst.   i hate it.  can't stand being touched.  nothing that i know to help it, just wanted to say, i'm with ya on that one. 
hugs, wayney
[/QUOTE]

that makes 3 of us, at least.
Yeah that bruised feeling is practically constant. Some days it even hurts to put clothes on. Most days its just annoying, I never thought that just touching my skin with my own fingers would make me cringe. Thats one thing I hate about have RA and Fibromyalgia. Which symptoms are for what disease????  Im beginning to think the fibromyalgia is what is hurting me the most constantly at the moment. Dr. only has me on elavil (anti depressant) for it. Sorry, but its not working. Im hurting and depressed!!!   

Karla,

I know what you mean about trying to figure out which symptoms go with which disease. I've had a RDs and therapists tell me that the fibro is actually much more painful.  And I too think that that's what my problem is right now.  I definitely have symptoms of the RA, but the fibro seems to be the worst.  My joints ache, but my body HURTS! I'm currently on Enbrel for the RA, and amitriptyline (antidepressent)for sleep, since the pain keeps me awake at night.  I have very obvious swelling.  Some have told me that fibro doesn't cause swelling, and some tell me it does.  However, blood tests tell me there's no inflammation.  I've been feeling pretty down myself lately, with all the pain and not knowing what's causing it.  The RD told me to continue on the Enbrel (which I can't afford) since I'm "symptomatic of RA,"  but all of my blood tests are normal.  Very confusing diseases, both of them.

Cris

(I love your signature line - CHOCOLATE!!  My favorite supplement

 

Cris,

Im on the amitriptyline also (elavil) and it doesnt do anything for me. The first time i took it, it helped me sleep. From then on, it doesnt help me sleep.   Im always so fatigued and feel like i could sleep all day, but then at night I cant seem to get to sleep.  I hate being fatigued and not being able to sleep.

I just read a couple good books on RA and Fibromyalgia. They are called "Good living with rheumatoid arthritis" and "good living with fibromyalgia" put out by the arthritis foundation. I got them from my library. They are very interesting books to read. I suggest you look for them and that will probably help with which disease does what when you have them both. Now, I must confess: i read the ra one in one day and then i didnt have time to read all of the fibro one before i had to take it back to the library. Shoot, should have kept it out and read it also.

I know ive gained enough weight with the prednisone but chocolate is my weakness.  GOTTA have my CHOCOLATE!!!

So far the amitriptyline is helping.  I get to sleep easier, and I don't wake up during the night.  The only drawback is that I wake up in such excrutiating pain in the morning.

Thanks for the names of the books.  I'll have to read them.  Maybe it will help me decifer some of this stuff.

I've given up lots of vices over the years, but chocolate will NEVER be one of them!  Must have chocolate! 

Cris

 

ALL THIS SKIN SENSITIVITY MADE ME THINK OF THE WAY I DRESS.  I SWEAR I ONLY WEAR CLOTHES THAT ARE VERY SOFT AS ANYTHING TOUCHING MY SKIN FEELS PAINFUL.  I HAVE THE SAME PROBLEM WITH LEG AND BODY SPASMS...THINK THEY CALL THIS RESTLESS LEG SYNDROM.  NIGHTTIME IS THE WORSE FOR ME, I WAKE UP WITH PAIN AND/OR SPASMS.   TRIED SEVERAL MEDICATIONS BUT THEY EITHER MAKE ME TWO DROWSY  THE NEXT DAY OR DON'T WORK AT ALL.  I LIKE THE WAY AMBIEN WORKS, MAKES YOU DROWSY AND THEN AWAKEN  REFRESHED BUT SCARED TO TAKE ON A REGULAR BASIS  FOR FEAR OF DEPENDENTCY. 


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