Diagnosed in 2015 and still suffering...

marksie1988
marksie1988 Member Posts: 2
edited 29. Jun 2019, 08:33 in Say hello
Hey All,

I was diagnosed in 2015 at 27 with Rhue stood Arthritis when I did tough mudder and went to the gym something wasn't right, I kept dropping light weights and getting pains in my feet.

Quickly the pain increased but my doctor's still hasn't referred me about 2 months on I struggled to walk but finally got a referral!

After a few appointments at the RA clinic I was diagnosed and started my journey on all the crazy medication, first taking methotrexate tablets which made me throw up and messed up my liver counts, I was then asked to add sulpherzalazine which made me throw up even more to the point that as soon as I took them I threw up.

After about 2 years and trying all other drugs, I was put on metoject and jumped up and down in doses due to headaches and sickness, along with a mixture of steroids to calm the pain in the meantime.

Finally went onto 12.5mg of metoject which worked great for the headaches etc but not the pain, again back on steroids (at this point I'm concerned I've been taking different steroids for over 2 years!) After another year I get told I'm not bad enough for the next course of treatment but they have me on steroids so of course I'm not bad!

Get to May this year and the doctors now don't know what to do, I can't stay on steroids but then I'm in agony. I payed it on thick and said something needs to be done, they finally decided to take me off the steroids which is where I'm at now, waiting for an appointment to go back and hope I'm bad enough to get the next course of medication.

Meanwhile my shoulders keep seizing up so I can't move either of my arms as I'm in so much pain, to top that off I now have to stop metoject as I have an infection...

I know this isn't as bad as what others experience in terms of pain, but I'm so fed up now after 4 years of pain and waking up wondering which joint will be in pain next.

On a plus... I did get to go onto Derren Browns show and be the main part of the show which was cool and it took away the pain for a few minutes😂

Anyway that's me. Any advice on things to try at home for the pain also appreciated :)

Comments

  • moderator
    moderator Moderator Posts: 4,085
    edited 30. Nov -1, 00:00
    Hi Marksie
    Welcome to the forum, so sorry you are going through a lot of pain at the moment. Everyone on the forum has Arthritis of some kind with various amounts of pain so they all understand what you are going through
    Just choose a forum and start chatting the most popular forums are Living with Arthritis and Chit Chat. You will find everyone friendly and sympathetic
    All the best Christine.
  • SusiM
    SusiM Member Posts: 87
    edited 30. Nov -1, 00:00
    Hi Marie
    I'm sorry to hear you've been suffering unhelped for so long. I don't know much about anything as on only recently diagnosed. I just wanted to offer some sympathy. It sounds like your doctor's are really needing you about. It sounds like they don't know what to do. Have you ever tried injections to counteract some of the side effects? I found that physio particularly the massage
    part really helped my shoulders. I can't afford ongoing physio so lm going to get some oil and try it myself. Both my shoulders sre painful and jarred. I understand your concern about steroids. They're not ideal long term. I hope the docs figure out something that can help you.
  • stickywicket
    stickywicket Member Posts: 26,253
    edited 30. Nov -1, 00:00
    Hi and welcome from me too. I'm sorry you've had so many problems with the meds. In a sense I was lucky in that, when first diagnosed, DMARDS weren't around so, at 15, I got used to taking aspirin 'until you get a buzzing in your ears', anti-inflammatories of many different hues, all of which ultimately gave me stomach ulcers and eroded my stomach lining and, of course, those lovely steroid monsters. So DMARDS came as a godsend to me. I was prepared to put up with side effects but they never happened.

    I take methotrexate (orally) and hydroxychloroquine and I always stop the meth if I have a cold or infection or am on antibiotics. It makes sense.

    It's one of the unfortunate facts of arthritis that we spend a lot of time hanging about waiting for appointments of one sort or another. When we're doing it without meds it can be tough. My latest operation, the surgeon wanted me off the meth for 3 months and it wasn't easy though, having been on it for years, I was a few weeks in before non-DMARD reality kicked in.

    It sounds as if the next medical step for you will be biologics. I've never done them so can't offer any help. In the meantime, though, you've hit on one interesting fact when you say Derren Brown took away your pain for a few minutes. It's a proven fact that the more we concentrate on pain the more we experience it so anything we can do to distract us from it helps. For me it's currently World Cup Cricket, Women's Football and L.A. Angel's baseball but whatever rocks your boat.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I began in 1997, was officially diagnosed in 2006 and am still 'suffering'. I don't see it as suffering, I see it as making the best if what I have whilst I have it because it dwindles more year-upon-year. :lol:

    Treating auto-immune arthritis is not a matter of curing, merely controlling. I don't know how much you have been told about the cause of your RA (I think you meant rheumatoid instead of rheuma stood) but it is triggered by the immune system going into over-drive and thus leading the body to attack itself. The immune system has to be suppressed to reduce disease activity which is the point of medication such as sulphasalazine, methotrexate, leflunomide, cyclosporin etc. Steroids work by reducing the density of all body tissues which is why they are not an ideal solution.

    I was born with an over-active immune system so for me this is just more of the same but if this came out of the blue that must make it harder to deal with.
    Auto-immune issues are known to run in families so if anyone else in yours has asthma, eczema, psoriasis, or another kind of inflammatory arthritis it could have been in the cards . . . . if not then it was your turn to pull one of the many short straws in life. :( DD
    Have you got the despatches? No, I always walk like this. Eddie Braben