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Early Symptoms. Not yet got a diagnosis. Muscles sore and siezed up.

Posted , 3 users are following.

caroline79970
caroline79970

I started experiencing stiffness and pain in my leg muscles about a month ago, and thought I just had some sort of flu bug. I went to the GP who took some bloods. She thought to start off with it could be PMRA and put me on prednisolone. A week later, she had changed her mind as my bloods were also showing a positive RA factor. She took me off the steroids and referred me to see a rheumatologist. 2 weeks on, I can hardly walk or stand. Going up or down stairs is agonising. I feel exhausted and fevery most of the time. Normal life has been put on hold, and my existence is now confined to lying on the settee. On Friday I rang the local hospital to ask how long the waiting lists were, and they told me about 14 weeks, or 6 for urgent cases. I just can't go on for that long.  Pain is something that's new for me and I'm not handling it awfully well.  It's put me in quite a dark place. Anyway, I ended up throwing my principles out of the window and today I've made an appointment to see a rheumatologist privately. I have an appointment for 9 days time. The thing that's concerning me is that everything I've read to do with RA mentions joints. I've had no pains in joints, just muscles. Could it still be RA if I'm not experiencing joint problems? I know that things will be clearer once I see the specialist, but I so need to start making some sense of what is happening to me. 

0 likes, 7 replies

7 Replies

  • loulou282
    loulou282 caroline79970

    Posted

    hello caroline, so sorry to hear you are not well. i have been waiting for a diagnosis for 10 years im afraid, i think its a case of wait and see what happens to us,the rheumatoid factor may just be an indicator that you have the disease in the early stages. Im a rheumaid factor negative but i have all the definate signs of ra and am currently on methotrexate to try and dampen down the condition,i have been worse since being on it with having a flare up every 2 weeks atm. going to be having a bone scan as my muscles and tendons all suffer and i also dont move far of the sofa. hope this helps a bit xx
    • cheria
      cheria loulou282

      Posted

      Loulou, you are entitled to receive the correct level of care from an RA doctor, and should be referred from your doctors office. Methotrexate is a medication that is sometimes used as a secondary medicine along with RA treatment but is very incomplete treatment for your RA negative factor. The constant flares show obviously your RA pain and condition is not properly managed and shouldn't be by a general practitioner who is not qualified to treat RA conditions as it is a specialty area you need. The referral should have happened at the time your RA negative factor was realized. The chronic inflammation rates cause so many chronic secondary conditions including serious cancers, and I hope you get your chronic RA condition managed as to keep you from other serious long term disability.
    • bronwyn97278
      bronwyn97278 cheria

      Posted

      Hi to all who have commented on this post: I certainly agree with Cheria....this problem,and especially the treatment of administering Methotrexate by a GP, is not something that I think to be a good idea...I always assumed this Strong drug should only be ordered/administered by a specialist.  I was very concerned when told by my neighbour that her GP had started her on same med, and had not been seen by a specialist (she said she is on waiting list), and am soooo hoping that her GP is in conference with a specialist ??? (was not quite game to voice my personal opinions as do not know this lady very well).  I will await more posts on this topic as Very interested....Bron 

       

    • loulou282
      loulou282 cheria

      Posted

      hi cheria, yes i have been under a rheumatologist for years and have tried hydoxycloraquine and sulfasalazine and now methotrexare all not working so i think there just trying different drugs atm. im due for a bone scan in a couple of weeks to see about what inflamation is going on or if it is bone cancer or something although when ive read about this is says its usually a seconday cancer and usually affects larger bones not feet and hands. to me it sounds like RA that just hasnt found the right medication to keep the flares at bay.xx

       

  • cheria
    cheria caroline79970

    Posted

    If your blood is showing a positive RA factor, this is rheumatoid arthritis, and I also had this crippling muscle pain which is secondary to the RA from all the inflammation, pain and stress of this pain, and in my case diagnosed as fibromyalgia. Prednisone is what is often prescribed for RA flareups, and I'm wondering if your gp recognizes they are not specialized to treat RA and must refer you to a rheumatologist for treatment. Being feverish and exhausted and barely able to walk stairs or distances was symbolic of extremely high inflammation rates due to RA, and this often goes hand in hand with fibromyalgia. One thing you can do that I never thought to do, with the RA doctor visit being a distance away was to go to the ER for some temp relief until your RA visit.
  • cheria
    cheria caroline79970

    Posted

    Also I found that magnesium glycinate which research shows is responsible for over 300 enzyme reactions including muscle reactions, helped tremendously for this pain. I took this with a high quality multi vitamin and calcium with D3 to help immensely with the fibromyalgia pain, once RA inflammation rates were managed. What helped get the high inflammation rates down for me was a prednisone (steroid pack). Also I discovered there was an underlying infection contributing to the systemic inflammation rates which was from previous dental work and a spread of bacteria at the root level.
  • bronwyn97278
    bronwyn97278 caroline79970

    Posted

    Hi Caroline...I'm sooo pleased that you went with your "gut", and made that specialist appointment;   as to me, this does require a specialist/rhuematologist, to administer the correct meds/dosages, and to monitor your progress on same, with regular follow-ups /blood levels etc.   As to your wanting to make  "some sense of  what is happening..."  that is also a good sign that you are sensible and taking this/these isues seriously,,,, this is YOUR body, and you deserve the best...keep us all informed of what/where you are at....best wishs,  Bron
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