Helloooo, RA factor of 100, unable to move from waist down

Bouve
Bouve Member Posts: 3
edited 4. Nov 2019, 07:34 in Say Hello
Hey everyone, I'm Kat and I'm new 😊
I'm writing because, as I'm sure we all feel, I have no idea what the hell is happening to my body.
I have a Rheumatoid factor of 100, whereas high range in RA is 12- 14. I'm in agony and have never heard of a factor as high as this if anyone can shed any light?

I have psoriatic arthritis that began 3 years ago in my toe, and was repeatedly turned away by doctors and I'm sure we all have experienced. I also have fibro/cfs, vitiligo and IBS, all the auto immune treats.

I will also state here that I have all of the typical symptoms of the PsA, dacitlytis, pitting of the nails, pin and needle itch. But that my doctors have made no other effort to ascertain the many other conditions that present with the same symptoms (lyme, lupus etc).

Following my toe, 1.5 years ago my right jaw completely locked, and from there I have completely seized up in both knees, both ankles, both sides of my jaw (can only drink) and am now completely physically incapacitated. The latter have happened in a matter of months and each joint has seized literally overnight.

I tried to walk with crutches as much as possible over the past year that my knees have gone although the tightening ligaments at the back of my knees and in my heels/ ankles that comes with PsA made it excruciating and range of movement became very limited. I was barely managing until I was given a course of steroids (helped at first) that just plunged me into hell when the course finished and now I can't move from the waist down, as well as several other delightful side effects. My parents literally have to move me and everything is agony, skin, joints, muscles (what's left), ligaments, veins (sounds weird but they ache).

I'm reading a million websites and they all say that exercise is crucial, but I wondered what do you do when you're completely incapable of moving and if anyone else is having this problem?
Atrophy has well taken ahold, I'm really worried about circulation for joint healing, and I'm really worried about joint damage. I'm using a Revitive to try and get some muscle tone.

In this state I am unable to deal with the side effects of the chemo medication along with the various other complications and symptoms that seem to have consumed my life. I can't sleep or get comfortable. I basically can't cope and wondered what other people in my situation are doing to help themselves?

Ice packs and hot water bottles are only helping so much, cannabis is only helping so much, and I'm on a functional medicine diet to heal any potential leaky gut with a million supplements that I hope will see an improvement soon. Trying homeopathy next.

That was long 😂 thanks so much for reading, I look forward to hearing the ways that some of you are able to cope or relieve pain. At this next step I think the only way I might sleep or get any pain relief is by being unconscious 😂

Oh also, does anyone know, Google doesn't apparently, if you can have so much fluid that it can leak or move? My toes are so messed up and purple that im worried they might become septic or leak into the rest of my foot? Yummy.

Thanks for reading xxx

Comments

  • moderator
    moderator Moderator Posts: 4,079
    edited 30. Nov -1, 00:00
    Hi Kat,

    Welcome to the forum, lovely to meet you, it’s good that you have managed to post.

    You really are struggling with joints so poorly you cannot move them and associated pain. If you want to ring our helpline for a chat the number is free 0800 520 0520 and they are available From 9am until 8pm weeknights.

    I don’t think a rheumatoid factor over 100 is particularly high, mine was 60 when I was referred to a rheumatologist and he said that was low for new referrals.

    Are you on medication for psoriatic arthritis (PsA), it certainly sounds like you should be on meds and on a special diet since you can only take liquids.

    Steroids are very tricky. They are excellent in relieving the symptoms but don’t effect any kind of cure, as you found out when coming off them. You should though have come off them very gradually to avoid the difficulties you faced.

    Here is our booklet on pain relief

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    which I hope can give you something fresh to try

    Do keep posting, at least we can help with distraction and the knowledge you are not alone!

    Take care
    Yvonne x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I can't help much. I have psoriatic arthritis which is a sero-negative form of auto-immune inflammatory arthritis meaning I have no rheumatoid factor. The meds for all the various forms are the same but different kinds of damage are caused. I don't have much psoriasis and never have. I also have osteoarthritis and fibromyalgia.

    We are merely patients, some of us reasonably expert ones too, but we cannot diagnose or advise because every situation is unique. I have had spells in bed but have always exercised something, somehow, every day no matter how rough I might be. I began the arthritis when I was 37 and wasn't accurately diagnosed until I was 46 which made no difference to anything. Now I am 60, far from how I would like to be but I am, and have always been, more than my disease. I was severely incapacitated as a child due to other auto-immune nonsense so am familiar with forcing myself to do what feels impossible but often isn't. It is far from easy but, fundamentally, it always comes down to oneself. Nobody else can do it for us.

    Right, I have used my rest time replying, now back to the chores! DD
  • stickywicket
    stickywicket Member Posts: 26,697
    edited 30. Nov -1, 00:00
    Hi Boure and welcome from me too.

    I find the most disturbing aspect of a very disturbing post is where you say “I can't move from the waist down “ Do you mean that literally? Have you seen a neurologist? Or are you just talking about the pain and stiffness of arthritis? With the latter, we just have to push into the pain with exercises but paralysis is quite different, nothing to do with arthritis and needs urgent attention.

    It could well be why, or at least a contributory factor, in why your toes are “messed up and purple” . However it may feel, I really don't think that pain is your main problem here. Lack of mobility is what will do the real damage. Assuming no paralysis, I'd be finding myself a good physio and following the advice to the letter. I consider physio has been what's enabled me to keep mobile all these years, especially when my joints were most reluctant, most stiff and most painful.

    I have RA, not PsA though I do have the pitted fingernails. I've no idea what my RF factor is or ever has been but I'm in agreement with Mod Yvonne. I think your info about RF isn't quite right. Many people without inflammatory arthritis will have an RF of over 14. Indeed, it's not unheard of for someone without an inflammatory arthritis to have an RF of 100. Have a read of this article in the BMJ. https://www.bmj.com/content/345/bmj.e5244 It says, among other things, “The highest absolute 10 year risk of rheumatoid arthritis of 32% was observed in 50-69 years old women who smoked with rheumatoid factor levels >100 IU/mL. “ ie 50-69yr old women who both smoked and had an RF of 100 were only more likely to develop RA. Besides, PsA is almost always sero-negative anyway.

    When you write of 'chemo medication' do you mean you have cancer or are you simply referring to methotrexate? For inflammatory arthritis meth is given in much smaller doses than in chemo. I've actually done it both ways (I first had it for cancer) and it has worked well for me in both instances. If the 'million supplements' and cannabis are prescribed then carry on taking them but, if not, they could be responsible for some of your symptoms by either interacting with each other or by increasing some things to overdose proportions.

    My jaw opens very little. The dentist struggles with me. How does yours manage? I'm also very difficult to anaesthetise as a result of that plus the neck arthritis. Have docs suggested nothing other than a liquid diet? No exercises? No surgery?

    You're certainly in a bad way and your poor parents must be worried sick too. What would I do in your circumstances? Firstly, I'd book an appointment with my GP to talk things over re diagnosis, medication, supplements and physio. This might well involve more appointments but I'd want to know firstly how to deal with the paralysis (if that's what it is) or physio if it's simply pain. I'd want to check out the cannabis and supplements (pharmacists are often best for this but do ensure you include all, prescribed or not) and also find out what help there might be for my parents if they are constantly lifting an adult, even if you are very petite. I'd want to know why there is an RF factor of 100 with a diagnosis of PsA. which is normally sero-negative.

    I do hope you can turn things around. Please keep us informed of your progress.

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