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Will I ever be able to exercise again?

Posted , 4 users are following.

dondons1uk
dondons1uk

 Hi All

Well firstly these sorts of sites have stopped me going mad over the past few months so thanks! 

First I understand it is usual to do a summary.  I've had funny health things on and off over the years.  Most significant is interstitial cystitis diagnosed 10yrs ago.  I had a huge allergic reaction to MSG about 2 yrs ago, in hospital for 4 days over Christmas!  Allergic to penicillin and trimethoprim.   Hair falls out at times.  Serious fatigue at times.  

This year its been hell tbh.  Started with pain in left knee after running.  Thought was a strain.  Went from swollen knee, to butt pain, to sciatica.  Wrist and elbow on left side also hurting but didn't link the two.  Went from bad to worse.  Anyway had a herniated disc causing sciatica but didn't explain the phenomenal weakness in my left arm and leg, nor the intermittent inflammation etc.

Blood tests showed an ANA of 1:1280.  I hadn't appreciated how high that was until recently but explains why I was suddenly having blood tests, MRIS, lumbars etc.  Think the docs were quite worried for a time!

They have decided now I do not have lupus nor MS or anything like that so am very happy.  But they have said it is an autoimmune disorder with links to Sjorgrens Syndrome (because of the IS, I also have dry eyes and get mouth ulcers etc).

Anyway doc wants to start me slowly on meds without rushing into the scary stuff like steroids which I am relieved about.

I totally forgot to ask him - will I get back to my physical best?!  I used to run 10k races a lot, I used to do obstacle races, would come like 4th lady.  Quite a strong little bean.  Now I have to get people to lift my shopping for me!

I am starting on hyrdoxchoroquine to start.  

I know they take months to kick in and I know I may need to play around with meds.

But is there anyone there with autoimmune diseases that does get back to physical activity?  Or is the goal just not to be in significant pain all the time!  Which is of course an admirable goal in itself.

Thanks all.

PS I appreciate this may seem insensitive.  I know there are people just wanting to get out of bed in the morning.  I am not meaning to be insensitive.  But everyone has to set their own personal goals and mine is just to run a 10k and windsurf again is all at this time.  If it gets worse my goals can shift but I need to know right now for my own sanity what this all means longer term.

Thank you!  

0 likes, 3 replies

3 Replies

  • gillian_25383
    gillian_25383 dondons1uk

    Posted

    Yes;there can be light at the end of the tunnel but sometimes smaller steps to start with.Touch wood at last the methotrexate is starting to do the job.At long last I can get in and out of a chair without excruciating pain (only 57 but problems kicked off at 40)

    .Next goal to do without walking stick although hubby says take each day as it comes (got 2 weddings to go to next year and dream of no stick-been my faithful companion for7years).10k runs would be pie in the sky for me but hope you have all the success in the world to reach your goals.As you say this site is a godsend;even if it is just to have a moan on a bad day.Great support then you can count your blessings

    • dondons1uk
      dondons1uk gillian_25383

      Posted

      What a great goal to have. Im pleased the meds are working for you at last.

      I guess it depends where you start from doesnt it? Ive been so lucky to get diagnosed so early. It took 7 months. Many people i read about its 7 yrs of damage building up and that takes so much time to heal. Thank you for your kind words.

  • barbara98940
    barbara98940 dondons1uk

    Posted

    Hi, I really hope you do manage to get back to your 10k runs. I'm replying to make sure you are aware of the possible side effects of hyrdoxychloroquine. One of them is damage to the macular at the back of your eye which could result in loss of vision. I was prescribed hyrdoxychloroquine and refused to take it when I read about this side effect - I already have damage to the macular and shouldn't have been prescribed it.  I have macular degeneration and was diagnosed at 46 instead of the usual age of 60+, so I wouldn't wish it to happen to you.  I would recommend you get an eye test and tell them you are on hyrdoxychloroquine and ask them for an Amsler chart and instructions how to use it, so that you can check for problems yourself. Also ensure you get regular eye check ups.  In UK I was given a leaflet on hyrdoxychloroquine - have you been given one? 

    You may wish to look up 'Low Dose Naltrexone (LDN)'. 

    All the best.

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