Does anyone have fibromyalgia with their RA? I have b... - NRAS


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Does anyone have fibromyalgia with their RA? I have been so tired I just sleep almost all day.

A few days ago was the first time I experience stiffness in my entire body it took two hours before I could actually get out of bed. It scared me and I wonder is it the RA or is it the fibromyalgia. I've been on 13 mg of the methotrexate my doctor lowered me to 10 and I don't understand why because I still have pain and swelling does that make any sense?

16 Replies

Yes I do. I tried Lyrica for the FMS but my feet and legs swelled up and I couldn't put a coherent thought together. Yes U agree I am so tired IO could sleep all day but unfortunately I work full time so no time for me to slack off! hahaha The rheumy is going to try something else when I see them in Dec and I started on Plaquenil a week ago for the IA. I struggle some days to stay awake past about 2pm after a night of no sleep and constant pain so I do sympathise with you, it is debilitating. Did you ask why they lowered the dose and why they are not trying anything else for the FMS?

in reply to Someonesmother

I I didn't get a chance to ask why she lowered my methotrexate. I found out when I filled my prescription and left a message with the office call me back but I have not heard anything yet. I'm also I'm plaque when and prednisone.

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Someonesmother in reply to

How long have you been on Plaq and pred? Maybe that is the reason they lowered your MTX. Who knows they do some random things sometimes and I am sure as it is all a bit experimental it is to see what will happen and if it works. My rheumy also takes days to get back to me it can be very frustrating when you need an answer. I hope they call you back soon

I've got both RA and secondary FMS - and secondary Sjogruns.

For me it's the RA that causes the pain and joint stiffness, FMS is more general muscle achy-ness and fatigue but I also get absolutely flooring fatigue when the RA is flaring or not well controlled. It can be confusing!

Cece x

in reply to

It's definitely confusing which illnesses causing which symptoms.

I have RA and fibro. Am very fatigued now, with both hands flared up. My consult gave me amitriptyline, it helps regulate sleep probs, and gives painkillers a boost. They have helped me with my sleep :)

in reply to lab-lover

I don't know why my doctor won't give me any pain medication or muscle relaxers. I don't have health insurance so I can't go anywhere else. When the pain gets so bad that I can't bear it I just go to the hospital and they get me out of pain.

I've had RA nearly 15 years now. Luckily, my then GP recognized it very early so I'm not too bad. On Mtx for that. Then last year I was diagnosed with Fibro. Used Amitriptyline at first but that stopped helping with sleep (why do we get sooooo tired but not able to sleep?). Now I am on duloxetine which mostly is helpful. hope you can find something to help

in reply to 64notout

Thank you for sharing. I see I'm not alone with these two illnesses.

Yesterday that happened to me I was so tired but couldn't sleep so I just stayed in bed that's all I could do.

It seems so many of us are so tired all the time but cant sleep . When we are awake at night because of the pain no wonder we are shattered all day , dont worry or feel bad about having s rest in the day its become a part of my life . If you can relax for a hr or two it will do some good . Hope you feel better real soon so feel for you . Regards Teresa

I do rest when my body tells me to. Some people don't understand and think I'm lazy. I usually say google RA and fibromyalgia then tell me I'm lazy.

Yes! I have the same problems! Was wondering is it arthritis or fibromyalgia! Trauma can bring these on, apparently, and AF is a 'trauma' is it not?

I had friends for dinner tonight first time have dared do this for a long time, and I was soooo knocked out, and in pain, it will be a long time befor i dare try it again, don't know what it isq, or where it came from, all over body pains! ?

I too have Rheumatoid and scondary fibro. Sleep is hell as I cannot sleep. I am so tired - I fall asleep but not for long then in the mornings it is hard to get out of bed. I am stiff and I ache but some how I manage to have the strength to finally move and get myself dressed washed and ready for work. The Pregabaline makes it hard to concentrate at work and mid afternoon I feel ready for a sleep! These dark days make it even harder. I have not found a way to help with sleep - tried all, warm drink, bath, oils etc etc etc but nothing works. I do not want to give up work as then I would have no social life. Very rare occasions I now go out at night as too tired (ready for pyjamas when I get home from work!) Hope you find a way to get some quality of sleep

I have both of those conditions and I have been coping for a decade. My meds are too long to list. I am on 16mg MTX and 400mg Plaqunell. I also take cymbalta for the fibro and depression. I actually had that upped. its now 80mg of Cymbalta. Dr's keep wanting to push me to the anti seizure meds like Lyrica. I wont have it. The side effects are too bad. I too sleep a lot. Its usually 10 hrs or more. Early on in my diagnosis I was on prednsone too. The steroids help, but don't get attached. After awhile the efficacy drops, as does your soluble calcium and Vit D. I actually lost 1/2 inch height from 3 yrs on that. It also can mess up your gallbladder. I cant tolerate any steroids at all any more unless they are injected.

First, are you taking any Folic Acid? Folic Acid can combat some of the more bad side effects of the Methotrexate. Like mouth sores, cough ect. My RA Dr raised Folic Acid to 3 mg. It helps a lot. I have a bit more stamina now. Sleepiness can also indicate your disease is active. I usually get very tired and early in my disease I actually broke a fever. Listen to your body and make notes for your DR. Second, Its important to have a good care team in place. I say team because you will down the road have other problems because of RA/Fibro. I have RA specialist. She is the coach. All others follow her lead. My GP is the medicine keeper and my go to woman when I have any issues. Say a cold or sinus infection. Plus in most insurance paradigms GP has to make referrals. I say medicine keeper because as you age and the disease advances you are going to start talking a LOT of pills. You need one person to just keep all of it straight and handle your refills. You need to have your eyes checked every year. Plaqunell can make you go blind.

Early in my diagnosis my RA was very active. MY Dr and I went after it aggressively. I was on Methotrexate (MTX) and Plaqunell right away. She also added in there some Humeria. A biologic disease managing anti-rhumatic. We hit it hard and fast and pushed me into remission. It didn't last, but that's that is the nature of the beast.

Everyone is different. Talk to your Dr. You have options and choices. You don't have to just do what everyone else is. You are the most effective tool there is in dealing with RA/Fibro. All said and done no one can make you take something you don't want to. Do the research and hit the boards like this one. Take an active role in your medical decisions.

Yes I have been diagnosed with both. It's horrible. I work full time but thankfully I have a sitting down job which helps. But when I have a morning off or a day off I can be in bed until lunch time, I just get so exhausted.

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