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RA, Fybromyalgia and Sjogrens Syndrome

Posted , 3 users are following.

jennifer54541
jennifer54541

I was diagnosed with RA 5 years ago and have tried many of the drug therapies out there, Methotrexate; Leflunomide, Cimzia, Tocizulimab; Retuximab etc.  I have recently been diagnosed by my GP with Fibromyalgia which is excruciatingly painful.  Is there anyone out there who has similar conditions to me who could tell me if anything has worked for them.  I have been put on Fluoxitine, Tramadol and Pregabillin to try and help with the pain.  Any suggestions?

0 likes, 12 replies

12 Replies

  • peter01102
    peter01102 jennifer54541

    Posted

    home gp are ltd what they can do for u .

    i found that asking to send me to hozzy doctor help with my problems.

    90% of them other 10% the doctor at hozzy new naf all what i had .

    pain clinic could give it a try .

    i have cfs/ fibro oa in a few places / and wait for blood resuit for ra in hands.

     

    • jennifer54541
      jennifer54541 peter01102

      Posted

      Thanks Peter.  I do have a Rheumatology Specialist who deals with the RA and Sjogrens Syndrome but the Fibro has been diagnosed by the GP.  I will be seeing my specialist soon so intend to take up the matter with him but just wondered if anyone on here had any advice.  Sjogrens Syndrome is another autoimmune condition which someimes comes as a secondary to another chronic illness, ie, RA.  My RA has hit me all over my body all at the same time which has been horrendous.  I hope you get some results soon for the pain in your hands.

       

    • peter01102
      peter01102 jennifer54541

      Posted

      i no out of the box cbt taking to them could help aiso.

      the pain in hands normal injections . ( hope i dont get them - as painfull ).

       

    • jennifer54541
      jennifer54541 peter01102

      Posted

      I am going to speak to my GP about CBT therapy, I have read about it on this site and perhaps it could help if it is availale on the NHS.  I will try anything.  I hope your hand pain is solved, I have had steroid injections into varous joints and although it is painful they have given me some relief for a while.  Good luck.
  • frances85589
    frances85589 jennifer54541

    Posted

    Hi Jenifer..I have sympathy for you as I too have those conditions and nothing has helped.At moment I am on predisalone sulfasalazine and pregabalin.Also having mri scans as jerking in walking and when sat...not all time of day thou.This new conditions started december at worst and I did think it was the last drug rituximab at fault but that has been discounted.

    I dont know the answer to all this pain and I feel like my life has been cut short of all I wanted to do in life..little simple things like not being able to hold your grandchild hurts more.

    When nothing has worked they always say the next one will and its months before you can and then it doesnt.its all the waiting.it puzzles me that some drugs work for others thou and people can continue to work..sorry I havent been much help but you arent on your own so others might be able to help

    • jennifer54541
      jennifer54541 frances85589

      Posted

      Gosh Frances, you sound like I feel.  I dont have grandchildren, I have 3 children who are all still at school and feel guilty sometimes because I just can't do what I feel I should be doing with them.  The pain has been unbearable and because of the local hospital being on black alert they have cancelled my last 5 infusion appointments for Infliximab which they wanted me to start.  I have no idea when I will get another infusion, is has been over 2 months now since the last one and not only is the Fibro causing a problem but the RA is flaring as well. I am so tired all the time.  I have lucky that I have a very supportive husband and my children do what they can but why should they, I am only 43 years old. 
  • frances85589
    frances85589 jennifer54541

    Posted

    I can only advise you rest when you can and do things when you can...housework will wait..your health wont.I have super husband too but it makes you feel guilty seeing them do things you want to do.

    I rub Ibuprofen gel onto my painful area which is great but only short term relief but helps me sleep inbetween attacks.I am 57 and had to retire due to this ill health at 54.

    Dont give up.if you do it makes you worse.keep on at the consultant.ring his secretary about your long wait for this treatment.get answers.do you have specialist RA nurses yiu can ring.I do but they are useless

    • jennifer54541
      jennifer54541 frances85589

      Posted

      Thanks for your advice.  I have received a letter yesterday informing me that I have a follow up appointment in 2 weeks with my specialist nurse, not sure what they are following up as I have had no treatment for 2 months but will go along and make my point.  I have lodged a complaint with the hospital but not really got any where.  In the meantime I will rest as much as I can and try not to feel too guilty.  
  • mrsmop
    mrsmop jennifer54541

    Posted

    https://patient.info/health/fibromyalgia-leaflet

    Have you seen the leaflet on Fibromyalgia?  

    I have Mucous Membrane Pemphigoid and was taking MTX for 18 months until I could no longer bear the pain that it caused, mainly in my hips and thighs.  I stopped taking it 3 weeks ago and have found some research from 1998, saying that MTX can cause these pains and it takes about 3 months to recover.

    I wonder whether your Fibromyalgia is anything to do with the drugs you have been taking?

    And the Sjögren's, they say that once you have one autoimmune, you are likely to develop another.  Do you have Sjögren's?

     

    • mrsmop
      mrsmop

      Posted

      Oops!  I have had this page open for so long, other people have posted and I didn't notice until I posted this!
    • jennifer54541
      jennifer54541 mrsmop

      Posted

      Thank you for your comment.  Yes I do have Sjogrens as a secondary condition to the RA.  I have recently been diagnosed with Fibro.  It's all a pain.  I have printed off the Fibro leaflet and plan to read it later.  
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