Palandromic Athritis and Inflammatory Athritis ;

WelshManStew
WelshManStew Member Posts: 3
edited 25. Jan 2019, 11:50 in Living with Arthritis archive
Hello all.

First post and unsure what to put really.
I suppose I should say, my name is Stewart I'm 43 and just been diagnosed with Palandromic Rheumatoid Athritis and Inflammatory Athritis, the latter confirmed just a day ago,after xray results from month ago. Joyo !

I've had rather severe symptoms since the warmth hit (back in the Summer) in the UK, flare up a daily with symptoms ranging from ; being unable to walk that well due to knees,or muscles in ankles or hip, hands seizing or just feeling "spongey", shoulder muscles seizing, leg cramps and finger flexibility issues. Also, now have side effects from meds, meds which aren't or haven't really started working yet.

Not going to lie, this has hit me hard, even though I can still move about ANY sort of over stimulus or heavy work (also even if not but less severe but still bad) leaves me incapacitated for at least 24 hrs.
This has effected my work ( unable to attend ) is affecting my confidence and all the usual.

The one that is really getting me down though is the recovery time... I haven't read much about this! I find that after ANY flare up,my body and mind seems to go into a lethargy type recovery mode....I feel physically exhausted.... almost as if the pain I had (example,feeling like someone has twisted my arm behind my back and my shoulder has torn) was actually caused by some prolonged physical assault.

I've always had a high pain threshold but this is bonkers.

This may read all a bit raw... or a bit scattered but,I was hoping to connect with people who may also have these conditions.

Plans for future are and have to be altered and I think I may have to change my career... as I physically find it draining now and the pressure of that also affects condition.

Thanks for reading and please be patient with me. I'm a happy soul but just a bit lost at present, lucky to have a wondeful woman in my life also.

Kind regards
Stewart

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi Stewart
    Welcome to the forum sorry to hear all your troubles you are going through a lot are present.This forum is full of lovely understanding and encouraging people who will understand what you are going through.
    Just choose a forum and get started Living with Arthritis and Chit Chat being the most popular
    All the best Christine
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Stewart,

    Really sorry that you had to find us, but hoping that you will find this a safe space to unload and find some understanding.

    Like you I started with Palindromic rheumatism (pain and inflammation in isolated and ever changing joints), which eventually became sero negative (I don't have the rheumatoid factor in my blood) rheumatoid arthritis which tends to affect symmetrical pairs of joints, It is indeed an overwhelming disease, and initially life is incredibly trying.


    Please don't despair, many people continue to work with arthritis, however sometimes we need to adapt the way we do things, or what we do. If you have RA your employer has a responsibility to make reasonable adjustments in the workplace-in my case I needed a different chair/desk that was more comfortable and supportive, I had voice activated software put onto my laptop, and there were changes to some of my teaching duties because playground duty on a cold frosty morning was painful! There are leaflets available that will give information and insight to your employer , and similarly to family and friends who maybe need to understand some of the challenges you are facing.

    Ongoing pain is wearing, it wears us out, wears us down and is utterly demoralising. In my experience one of the most important things is being open with those around you, and being ready to accept help when it's offered. Fatigue is one of the symptoms of inflammatory arthritis, and if you can find a way of being more gentle with yourself and pacing your activities t will help. I suggest looking up the spoon theory on google- it might help you to explain your struggles with those around you-it certainly helped my husband and (adult) children when I first developed RA.


    Medications for arthritis can take several months to work properly, and sometimes it takes a while to find the best combination, keep talking to your rheumatology team.


    Deb.
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hi Stewart and welcome from me, too. I'd endorse all that dibdab has written but would just like to add that I think you might be a little confused about what you have. Palindromic rheumatism (sometimes called palindromic arthritis) is an inflammatory form of arthritis. There are many inflammatory forms. So, I don't think you have two things, just one. This might explain better than I can. https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

    The good news is that whatever form of inflammatory arthritis we have (Mine is RA ie rheumatoid arthritis) the meds are broadly the same so, if you're treated for one 'branch of that dysfunctional arthritic family' and they eventually (because arthritis is a devious little beast) discover you have a different one, your treatment will remain virtually the same.

    It's a rubbish disease to have but give yourself time to adjust and be patient with yourself. There is life after diagnosis and it can be very good indeed.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • WelshManStew
    WelshManStew Member Posts: 3
    edited 30. Nov -1, 00:00
    Hello all.

    Thank you so much for responding. I am very heartened to read shared experiences (as much as I wish we didn't have to have them!)

    I will re-read these messages and reply a bit more in depth.

    Gonna be an interesting time I think.

    I've had a RA and oc health with work... They were and have been good and flexible in regards to working day if I am tired. Though the flare ups and fatigue has worn me out and I have had enough time off.... I think that is a change of course for work. As much as I hate to say that, health comes first.

    Adapting what I do will be an interesting one... Also I am naturally "High tempo!" Wired so that will also have to change.

    Cheers again folks.
    Again thank you so much.

    Appreciated.

    Stew
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you and I am sorry you have had to find us. I have psoriatic arthritis (PsA), another kind of auto-immune inflammatory conditions of which there are many, and that has led to osteoarthritis (OA) and other nonsense too. Having been born with auto-immune rubbish the PsA was no surprise but the OA diagnosis was a complete shock: I thought you had one or the otherwise, I never knew both was a possibility. :lol:

    This must be a real shock for you, I am so sorry. I am in my twenty-second year of it all and used to it but how bewildering it must be . . . I don't have any wise words at the moment as I am having a tough time with the OA and I'm all out of wisdom. What meds are you trying at the moment? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben