Friday, February 12, 2010 Chris, Community Member, asks

Q: All over muscle pain and stiffness from RA

I am newly diagnosed with RA.  With the exception of my fingers, I do not have too much joint pain.  What I do have is all over body muscle pain and stiffness that is not relieved with Advil.  I have been on Methotextrate for over 3 mos. with no relief, and my dr. will be adding another medication to my regimen.  Everything that I read talks about RA affecting the joints.  I would like to know if there is anyone else out there who is experiencing all over muscle pain and stiffness from there RA.  Also, is there anyone else out there who was not helped by Methotextrate, and how long it took them before they finally where able to get some relief.  I am getting very discouraged!

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Answers (9)
Vicky Gordon, Community Member
2/13/10 9:04am

Hi Chris,

  I feel your pain, literally. I have a lot of stiffness and pain in my hands espicially in the morning, I am on MTX injections and have been for about 2 months and haven't seen much relief. I also have back,neck,elbow,knee and foot pain, my doctor says RA doesn't cause muscle pain but it feels like my whole body is just frozen in the morning, I go back to see her March 1st and hoping for a new med with better relief, I have also found that using heating pads on my hands in the morning helps tremendously. I also take lortab and diclofenac and plaquenil but do not have much relief there either. It's like a never ending process of trying to be pain free. Let me know if you find a good remedy for all this muscle pain. Also I suffer from extreme fatigue but my doctor says there's not much we can do about that either! Ugh!!!! I know exactly how frustrating it is!!! Good luck! 

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Chris, Community Member
2/14/10 11:11am

Hi Vicky,

Thanks so much for responding to my question.  It is good to hear from someone who is going through the same thing I am.  My doctor did say that RA can cause muscle pain, she said the disease affects everyone differently.  I am just very confused about my diagnosis.  I did have a positive RA factor in my bloodwork, but dr. said you can test positve for RA and not have it, or you can have it and test negative???  I am very confused.  They gave me the diagnosis in October 2009.  I just mainly have the all over muscle stiffness and soreness that lasts all day, and is worse after sitting for long periods of time.  My hands are puffy and sometimes by fingers hurt.  I have a paraffin wax bath that I soak my hands in, that seems to help.  Dr. increased the MTX to 8 pills, and added  Sulfasalazine and Lyrica a few weeks ago.  I have yet to start to take the Sulfasalzine or Lyrica, I am afraid of the effects of taking multiple medications and am considering going for a 2nd opinion.  Do you have any side effects taking the multiple medications that you are taking?  I do have fatigue also, but I've always been quite tired, and I also have Epstein Barr which doesn't help.  I am very frustrated , just as you are!!  I feel that I will never feel my old self again!  I have been healthy all my life, and now in the prime of my life I've been hit with this (I am 48 years old).   Does you muscle pain ever feel like a burning type of pain?  I notice this mainly in my thighs.  It does help to talk to others that have this disease.  Please keep in touch and let me know how you make out with your treatment.  Sincerely, Christine

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Lisa-Marie, Community Member
4/ 5/14 10:12am
Hi Vicki and Chris, I'm in the same situation with pain all over and I love your description of feeling like you been through a massive workout, but I just waking up from a night of sleep. My doctor seems to ignore my complaints about the pain and is only focused on my joints, which is nothing compared to the pain all over my body. I started out on the drug that starts with an M and worked my way up to right pills, it wasn't working. I'm on embrel injections 50ml once a week and I think the does needs to increase because I feel the pain gets worse the closer I get to my next injection. Frustration and pain are just something I live with. It is getting hard to stand up from a low seated position and I have to use my arms. Sometimes I feel like I can't get up and my legs start to quiver and I feel like they will give out. Good to know I'm not the only one. Lisa-Marie Reply
Rheumuglity, Community Member
2/13/10 1:34pm

I am so sorry you are having so much discomfort.   I have RA in all my joints but I get muscle pain soimetimes all over. My Rheumy dr said it was part of it.  Have you brought this to your doctors attention?  You might want to.  Go se the DR. and let us know hon how it turns out..  It took me a while to find the right medication that worked for me.

I took methrotrexate in the beginning and it did not help me.  I wasn't on it long enough before becoming anemic.  Hang in there. I hope you find your medication mix that works very soon. 

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Vicky Gordon, Community Member
2/13/10 8:03pm

Hi! What medication did you switch to after MTX? I am hopefully going to get switched to something in March and just don't know which one is best. I have heard enbrel is the cheapest and one of the better ones! 

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Chris, Community Member
2/14/10 11:15am

Hello,

Thanks so much for responding to my question.  It does help to talk to others who are going through the same thing.  My muscle pain and stiffness affects my whole body, and is sometimes a burning pain.  I feel like I've had a massive exercise workout, but haven't.  I did tell my doctor, doctor says sometimes Lupus can cause muscle pain, but that has been ruled out.  Dr. did say that RA can affect the muscles, and that it affects everyone differently.  I am increasing to 8 methrotextrate, and the doctor has added Sulfasalazine and Lyrica which I have not started to take yet.  I am afraid of the effects of multiple medications, and am considering getting a 2nd opinion before I start taking them.  Thanks again for the info, I wish you the best with your condition.  Sincerely, Christine

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Kris, Community Member
10/25/12 9:08am

I'm experiencing something similar to you.  I have a lot of muscle pain throughout my body and stiffness.  The stiffness usually occurs in the morning when I wake up and in the evening.  I have painful hard spots under my skin where I have the muscle pain.  Fatigue is also present.  I haven't received a formal diagonosis and this has been going on for 5 years.  I am 47 years old with a positive dna antibody and my mother and sister have autoimmune diseases. 

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colleen, Community Member
5/26/10 2:35am

Hi

I also suffer from RA Methotrexate took a while to work for me, but I switched to the injections once a week and had fewer side effects. I also found that for the muscle ache I was given Tramacette. It is a pain killer, but I found that I only had to take it once a day and it kept the pain at bay, it also didn't constipate me or make me sleepy.

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ellie, Community Member
5/26/10 7:41am

I totally relate. Recently diagnosed and my dr said that the muscle aches IS NOT from the RA so she sent me to a neurologist who did EMG and all was fine. Went back to RA doc, who insists its neurological. When I told her she has my test results and there in nothing neurological, she shrugged.  I found some relief from Percocet, but the RA doc is VERY resistant to prescribe.  She said that the RA meds alone will address the pain which is caused by inflammation. Interesting thing is that my sed rate is normal....therefore it is not the inflammation. I know exactly what you are talking about.  I get those pains in my thighs and hips. I also had EBV 10 years ago and my titers are still off the charts but not active. I have tried everything for the pain. Nothing worked except the Percocet 7.5mg 4x day.  Doctors are so paranoid about being called on the carpet for narcotics that she cut my script in 1/2 after only 1 month. I fell like crying. I finally find something to address the pain and it gets taken from me. Feels like a communist country! As far as RA meds...methotrexate damaged my liver after only 1 month and now I will be trying Enbrel, which scares me because it can stir up latent autoimmune diseases including MS. I think the problem is with the doctors...if only we could find a good one who understands the pain, fears, and complexity of treating the disease in its entirety.

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cathy, Community Member
9/27/12 7:02am

Hi ellie my name is cathy I have had ra for almost three years now and My pain is still not regulated. I am sorry to hear that they decreased what works for you. Everybody is different with this illness and something works for one but not the other. Ive taken narcotics before and I do not like the way they make me feel in the head. So I am trying larger doses of prednisone. I am going to try the injection if it does not work Ill just stop taking it. Just insist to your doc that that is what works for you. or find a new doc. Ive taken methtrexate hydroxychoroquine,diclofenac, folic acid prednisone, 50,000 units of vitamin D and ultram nothing helps enough to make me feel I found the right thing for me. Just hang in there the best you can. I will be looking out for your next post. feel better cathy.

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jenna, Community Member
2/27/11 9:44pm

I was diagnosed with RA after years of pain and dozens of doctors visits.  It sounds like you and I have the same symptoms.  I have pain ALL OVER, to the point where it hurt to touch me with any pressure. I was sure I had some type of cancer.  The doctors thought maybe I had fibromyalgia and put me on a fibro med that made me feel worse. Finally I went to a RA doc who told me I clearly had RA. I told him I had no joint pain and it was my muscles that hurt.  He told me that RA can affect the joints or soft tissue (ie. organs, ligaments)  He said that my blood vessels were inflamed and that is why I was in pain.  I am currently on Methotrexate (8) once a week, sulfazide (sp) twice a day and folic acid.  It seems to help some, my husband says he can tell it helps a lot because he can rub me a lot harder, and I know it's true but its hard to admit when you are still in pain. I am still in denial myself that I have RA, it's not a disease anyone would want and the meds are almost as scary as the disease.  I do know that I want to be as mobile and active as possible for my family ( i have a 5 and 6 year old) and the meds are helping.  My RA also told me that he knows its scary (the side effects) especially the fact some can cause cancer (which my mom died of) but that I will get my blood work done every month and if any side effects did occur we would catch it early.  Good luck to you.. I I know it is a scary and frustrating disease and only hope for all of us, some relief.  Jen

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chris, Community Member
2/28/11 10:25am

Hi Jen,

Thank you for responding to my question.  I am on my second rheumatologist, and still don't know if I have RA, fibro, or both!!  I stopped the Methotextrate because after 8 months, it did nothing to relieve my symptoms.  I am now on Arava, and so far no help from that either.  Did you have any tests to confirm that your blood vessels were inflammed?  What meds did they give you for fibro?  They wanted me to take  Cymbalta which I refused to take because I've heard horror stories about it.  I am just constantly stiff, and muscles are sore, especially after sitting for long periods of time.  I get numbness into my hands and sometimes feet, and my hands constantly feel puffy and swollen.  I am going to get another opinion.  I do have a positive RF in my blood, but the anti- CCP is negative.  I've been told you can have a positive RF in blood, but still not have RA.  However, my inflammatory markers have been elevated (CRP and Sed rate) for probably 2 years now, so I know I have some inflammatory condition going on.  I appreciate the information, it is good to talk to others that have the same issues so I don't feel like it is just me!  Sincerely, Christine

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Lynda, Community Member
6/28/12 3:49am

Hi Chris

 

I have a dx with either RA (seronegative) or Spondalyarthritis.  My small joints are 95% relieved with the use of Methotrexate, 20mgs on a weekly basis plus 5mgs of folic acid taken 2 days prior to the Metho.  It took about 6 weeks before I noticed any improvement.  I now have hip, lower back, upper back and neck stiffness sometimes lasting all day, but particularly bad in the early hours of the morning and when I wake up. Is difficult to turn over in bed and always wakes me up.   Exercise only helps with flexibility but not with reducing the pain, it just keeps coming.  I have been prescribed Ibuprofen 2 tabs up to 3 times daily which has limited effect at relieving the stiffness.  I think I need some other medication added in now for relief of those large joints.  Also get really tired at times and red, irritated eyes plus nil libido, so not much fun to be round at the moment!  Hope things are going well for you as I see you posted this some time ago.  Cheers from New Zealand.

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Bets, Community Member
6/30/12 3:57pm
This is the first time I am writing to others about my RA. I have read those posted and realize that I am not alone though I do feel very much alone with this disease. I am 54 years of age and was told in my early 30s that I tested positive for RF(very high). Increased inflammatory markers have been high with every blood test since. I have been on many different meds. But have never felt the same as before this diagnosis. I now have fibrosis for the lung. Have had many scary infections and am in constant pain,stiffness and fatigue not to mention all the weight gain from these meds. I can not seem to get off of prednisone now and the dr says that I will prob. Need to be on this the rest of my life. Life has really thrown us a fast ball and as I try to live with this one day at a time it can be very overwhelming. I wish every one suffering with this autoimmune disease good luck and peace! Bets Reply
Chris, Community Member
7/ 1/12 8:55am

I am very sorry to hear about the problems this illness has caused you.  I am still not sure if I have RA or fibromyalgia, or both.  I am going to my 4th rheumatologist.  My RF is not very high, but I always show elevated inflammatory markers.  I don't have real joint pain, except for my thumb which is swollen at the base and clicks when I bend it.  I have all over MUSCLE pain and tightness.  Is you stiffness in your muscles or your joints?  I do not want to take any of the scary RA drugs that are out there, if I do indeed have RA.  And there is nothing they can really offer me for fibromyalgia other than Cymbalta.  I am thinking about trying accupuncture.  I am able to work full time, but I am also in constant pain, especially after sitting at a desk for 8 hrs.  I know there are worse diseases out there, but I just feel that there are not many options for treating either RA or fibromyalgia, and I also feel very alone.  Thank you for taking the time to write to me.  I wish you well!  Sincerely, Christine 

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cathy, Community Member
9/26/12 4:21pm

I chris my name is cathy and Ive learned from paying attention to my body that when I am rested I don't ache as bad. I to am afraid to take all these different types of immunity depressing drugs. I have recently had to quit my job because I just can not work  anymore. I have filed for my dissability. I was calling into work regularly. I do a lot of praying and trusting in GOD. With the way these docs are just throwing around meds and I am not trusting them anymore. I decided to try Jesus. Praying and asking the lord to give you strength does build a relationship with the invisible. who knows maybe this his will to get us all where he wants us to be. But for now we have to take one day at a time and exept the fact that this is the new normal for us.

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cathy, Community Member
9/26/12 4:02pm

I have had ra for 2 and a half years. I have all over body pain. My neck my elbow my knee my wrist my pelvic area between my legs my lower back my ankles and my shoulders are affected. I took methotrexate for 1 year and a half and it did not help I take hydroxychloriquine at this moment and that does not help either. My flare ups are so unpredictable that I cannot plan anything. Some days I don't hurt as bad. But today I am in excruciating pain. my knee never hurts and for some reason it has started to ache also. I am 48 years old and I am seeking a better RA doctor. I am going to try the injections, I am desperate. I don't get any rest at night because it hurts to lay in one position to long, so I toss and turn all through the night. My hips have started to have a dull ache at alltimes  it hurts to climb stairs or to just walk or stand in one spot. You are no alone. don't give up try new meds just to see if they work. I am to young to succomb to this illness.

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Joan, Community Member
12/ 1/12 9:10am

I hope all of you will find some relief from the RA.  I was dx with RA back in 2001 and fibromyalgia later. I found that my diet played a huge part in my daily living.  The muscle pain decreased once I took all sugar away.  I use Stevia instead and some honey.  I do not get  tired since I started using adrenal capsules  and they work rather quickly to get my adrenals up.  I do not have to use them all the time just when I start to feel the tiredness coming on. Have eliminated all wheat and  wheat products  and use almond milk.  Also went to an allergist and found other foods I was sensitive to  that  have now been eliminated from my diet. A lot of problems start in the gut.

Also,  try to swim at least 2 to 3 times a week,  that warm water works wonders. I am currently using turmeric to help with inflamation and joints.  It is an on going battle as the pain is always present at some stage but with the help of a good diet and excercise and prayer,  it has made a world of difference.  I do take methotextrate 3 per week and pain meds when needed.  The warmer weather also helps.  Good luck to all, you are not alone, life does get better. 

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By Chris, Community Member— Last Modified: 04/05/14, First Published: 02/12/10