anyone with arthritis and ME/CFS?

KittyKate Member Posts: 9
edited 3. Feb 2011, 08:06 in Living with Arthritis archive
How are you coping? Any tips as to how to get on with things. I am not coping at all. I dont know if I have arthritis yet but have seen my rheumy and had blood tests and an x ray. Just waiting for my mri now. I beleive my symptoms fit ankyolising spondilitis. I only recently learned what that is but it seems to fit everything I have gone through these last few years. But having all this pain and trying to fight CFS at the same time is getting far too hard. I dont know what to do.


  • puffin
    puffin Member Posts: 67
    edited 30. Nov -1, 00:00
    Hi KittyKate,
    I have been diagnosed with both. Have a long, complicated medical history, like many people on here and I won't go into that here.
    This is my worst time of year--again as many of us find.

    After I saw the written diagnosis ME/CFS I had to learn about that.
    Along the line I was also diagnosed with Fibromyalgia. Had not heard of that so again had to self educate because of lack of explanation.

    So many symptoms overlap. The crushing fatigue of ME, dizziness, general weakness etc. could just as easily be explained as the effects of AS where the inflammation of the spinal joints affects the nerves and therefore muscles. The nerves are the 'masters' of the muscles. AS comes under the umbrella of Rheumatoid Arthritis.

    If you are diagnosed with it you should get plenty of support (unlike me).
    Am going to post this now as I have a habit of typing slowly and being timed out so the message is lost.
  • puffin
    puffin Member Posts: 67
    edited 30. Nov -1, 00:00
    Hi Kittykate,
    Part two of message!

    Obviously symptoms vary according to severity of AS's effect on the spine and elsewhere.
    They also vary according to what you do physically (the basic activities of living, job if any, travel involved, etc.), the weather, what you eat, how you sleep, daily stress, extra stress and really big stress.

    Some days I think I can 'choose' my pain! (I have not worked for a long time and am on my own.) The morning stiffness is the greatest challenge---that is my polite word. If I force myself to go out, say to the PO. which is the nearest useful destination, I know I will be in a lot of pain--hip pain, sciatica, abdominal pain, rib pain and so on but usually the fresh air and sight of the outside world are some compensation. The pain of muscle contractions a short time after return is agony but I have less depression, partly because of fresh air and partly because of sense of independence and achievement.
    The fatigue after an outing hits the next day and usually lasts two or three days. This is always out of proportion to the time spent out!
    On housebound days I try to move regularly but pain is constant whatever the activity--- except for lying flat and napping.
    I cannot rise early and I take a long time to get 'up and running'. I do recommended stretching exercises and then rest, then do some basic chores. In the afternoon I rest flat and try to nap. If nerve pain is still screaming at me I get up and do something to keep my mind off the pain.
    Varying the activity and rest is one key.
    Often there are days when you cannot do anything but rest and eat very simply.
    I have not mentioned my medication.
    Must post!
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Kate,

    Sometimes its all such a hard slog but you will get there and as they start to know whats wrong and give you some treatment it will get easier that i can promise you.

    Knowing the enemy within helps flower....... I know just now its all very hard for you and I don;t have any magic words to say but i do know you will get there.

    Tis all about pacing your self and if you feel the tiredness sit and rest up and doze if need be. Even half an hour can help.

    I so hope your test results come back and they will know whats going on and help you. ((( ))) and hang in there. Cris x
  • zechariah
    zechariah Member Posts: 222
    edited 30. Nov -1, 00:00
    I have ME and OA, I was taken ill in 1996 and had a real battle with health and doctors, I was very ill for about 8 years.
    My ME is fairly controlled by pacing and only rears it's head as a flare up about once a month now, I have had a knee replacement and am now in more pain, I did ask my Ortho consultant last week if the ME is causing extra problems, he was unsure!

    I am now having tests to see if another form of arthritis is involved, the ME is made a bit worse by the extra effort it takes to get about!

    I would be interested to know if anyone knows if arthritis is worsened by ME
  • frogmorton
    frogmorton Member Posts: 28,308
    edited 30. Nov -1, 00:00
    I know nothing Kittykate, but want to offer my support to you and hope that with the diagnoses will come treatment and help.


    toni xx
  • KittyKate
    KittyKate Member Posts: 9
    edited 30. Nov -1, 00:00
    Thanks for the replies guys, sorry I didnt reply sooner. I am so dippy I forgot I even made the post in the 1st place.

    I'm floatng in limbo at the moment. Not sure why I have all this pain and I will have to wait a while to find out. Anyway, I have my cfs apointment on the 22nd and an MRI on my spine on the 4th of march. I just hope they can figure out this pain and help me.
  • zechariah
    zechariah Member Posts: 222
    edited 30. Nov -1, 00:00
    D-Ribose really really helped me with ME/CFS it really keeps your energy levels up, the forum Brainfog is brilliant for advice and support
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Hi there! I wanted to wish you good luck for your appointments. I also have a diagnosis of chronic fatigue. They say you should pace yourself but it's hard because some days there are things that have to be done. It's also trial and error. I know that when I need to rest though, I need to rest and other stuff will have to wait.
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Welcome Kate. I am so sorry to read about your 2 health issues. It must be so much for you to deal with but like Cris said a diagnosis isthe first important step.
    My daughter has CFS and I have Rheumatoid arthritis. They are both auto-immune diseases I believe. We both have to pace ourselves to get through each week. She has changed her diet to mostly fresh veg and says this has helped combat the extreme tiredness but not banished the symptoms totally. She also eats gluten free food and says this also helps her tiredness symptoms.

    I would like to ask Puffin why this time of year is difficult? I would be interested to know, Is it the colder weather? My daughter doesn't always tell me how I can help her so I'd like to know.

    Hope you get some treatment soon Kate.Do let us know how you get on at your next few appointments,
    Take care