GBS, rheumatoid arthritis – confusion
AnonymousJanuary 26, 2007 at 6:17 pm
I was talking to a woman today that I’ve known for a month or so. She had previously told me that she had rheumatoid arthritis, had seen a specialist who was not very helpful and basically treated herself over the years and you wouldn’t know to look at her that she had it. She got better under her own steam – she exercised, pushed herself a bit and uses herbs.
I met her today, she’s not on the best of form – chest infection, a lot going on and in a new job. Any road, we had a bit of a blather.
She told me about the RA, that 6 weeks after her child was born she woke up one day and her legs were very weak and painful. She ended up in hospital for 3 weeks and the weakness and pain continued up her body, into her arms and then her breastbone and sometimes the pain can return. Naturally, my ears pricked up like a spaniels. I suppose it is a natural reaction for a layperson like me who has met GBS, to wonder when they hear a story like this.
When she went to see the Rheumatoid specialist she was in a wheelchair (I think she said).
She was very tired today and I asked her if, when she gets that tired, was is like really bad, but ordinary, tiredness. She answered immediately, straight from the heart – “No.” I forget how she put it, but she was talking the sort of fatigue we often talk about. So, I asked if she ever got funny sensations with the RA, like pins and needles – that sort of thing. Oh yes, she said.
Now, I knew nothing about GBS until I got it and there’s doubtless a lot of different medical things just as strange (to me) out there.
Outside of medical issues, it is strange how many things we appear to have in common, so when she mentioned having a baby and 6 weeks later the weakness in her legs, the wheelchair, the fatigue and the pins and needles, it kind of raised the hair on my head a bit as I got GBS 6 weeks after giving birth, was around 3 weeks getting worse before thankfully starting to improve. I’m nervous of asking if she gets really cold feet although I know she lights a fire every evening.
I remember reading one or two times where people with GBS saw a rheumatoid specialist – and I started to wonder, why? Is is possible to mix the two, in as much as – do they present similarly? I didn’t think so, but I don’t know.
I’m a little cautious about asking her questions as it could sound like I know what I am talking about and I don’t, not medically, and I think that I have to be careful not to mislead. So, I told her about my having had GBS and about this site.
Anyway, just thought I would tell you’s about it and see what you all thought
AnonymousJanuary 27, 2007 at 5:32 pm
She told me about the RA, that 6 weeks after her child was born she woke up one day and her legs were very weak and painful. She ended up in hospital for 3 weeks and the weakness and pain continued up her body, into her arms and then her breastbone and sometimes the pain can return. Naturally, my ears pricked up like a spaniels. [End QUOTE]
Strange indeed, from my limited experience with RA her symptoms sound more like GBS. My father-in-law was once told there are several types of Arthritis and you have them all.
AnonymousJanuary 27, 2007 at 6:51 pm
I am so glad you replied! I was too embarassed to contact you as I had ‘good intentions’ over the Christmas period that did not materialise.
I have come to realise that I am a lazy s*d with regards to people. I have to face facts – and I have recently realised that I am also still angry with my husband. And also – I really enjoy my job – after work, I seem to be hitting the couch for a couple of hours or more but I enjoy the job itself, especially as I have a temporary boss at the moment and she seems good.
Thiough I have thought of you often I haven’t put pen to paper and I am sorry. Somewhere over the Christmas period (I don’t actually remember where) I was up looking after my Mum for a week before and a week after Christmas. She asked after you. It’s amazing as her recent memory is rather poor now but she remembers you.
Sarah is grand – half the time as stroppy as anything and the other half – well, it more than makes up for the stroppy half! Every single day is a new learning experience for me with her.
Thanks for what both your and Mauricette’s replies. It does sound like GBS, doesn’t it? I’m pleased it is not just me that thought that. It is so peculiar. I find the similarities between us very intriguing.
Mauricette – you said “from your limited experience”. I hope you haven’t got RA. Oh your poor father in law – to be told wasn’t much help.
I don’t quite know what to suggest to her now. I’ve told her about the Boards and I rather hope she joins in. I did a quck reccie in my head about what I might have previously posted but, for all that it was from the heart, none of it was a lie so ‘so be it’.
All I can think of is to suggest that she ask a few questions of her doctor. IF she did in fact have GBS, just knowing it might help as regards dealing with the residuals.
Donna, as I said, I am a lazy so and so as regards people – probably because I am not very good at people skills (or whatever it is called nowadays). But I sincerely appreciate and am delighted by your response. In the midst that all you deal with and have had to cope with, your kindness and big heart shines through to me and echoes down the years.
AnonymousJanuary 28, 2007 at 1:49 am
I just posted the other day on the main forum about this topic.
I had GBS thirty years ago when I was 3. I have just recently been diagnosed with RA. I’ve realized I’m struggling with trying to differentiate and explain to my doctor the pain and mobility issues with my arthritis and the separate muscle and nerve issues I seem to be having as well that may be GBS-related. Of course, I didn’t realize that GBS has residual effects. I was never told this by my doctors growing up.
In any case, someone just posted on here that once you have an autoimmune disease, your odds of attracting other autoimmune illnesses increase. The difficulty, as I see it, and as I’ve experienced it, is the symptoms can sound like a few different illnesses (arthritis, fibromyaglia, carpal tunnel) and without having knowledgable doctors who have actually heard of GBS, the chances of misdiagnoses or worse, being summarily dismissed as a head case, are common.
In any case, I’m very curious about other cases of RA and GBS residual effects, as it seems to have really complicated my efforts to get adequate treatment. I don’t know as this helps you, specifically, but it’s a piece of this puzzle!
AnonymousJanuary 28, 2007 at 6:25 pm
Thanks for your reply. I was sorry to read that you have arthritis to contend with at just 33 years of age.
I do think that just realising that there are separate issues going on with regards to RA and GBS, is good, though I know you have a fight on your hands with the docs.
You mentioned that you weren’t told by doctors about the residual effects of GBS. So far as I can tell, the docs didn’t know. It is still questionable in medical circles, though not by those of us who have had GBS!
You reminded me that I know of a woman who had GBS and subsequently was diagnosed with either arthritis or rheumatism. She wore brace-type things on her hands. She had an operation a year or two ago on her hands and is functioning much better now.
I’ll try to find out what the story was with her but not tonight as it’s now 1.30 a.m. here in Ireland and she’s probably in bed (though I rather hope that she is out whooping it up somewhere).
What throws me is, could RA present with weakness in the legs? According to what I have read on the Internet, it doesn’t. But then again – what one reads on the Internet does not necessarily reflect real life.
AnonymousJanuary 28, 2007 at 10:52 pm
When I was being educated about GBS I was told by a friend that has a severe case of rheumatoid arthritis and she does have very similar things happen to her during a flare up! Oddly enough her Son had GBS from the waiste down about 9 years ago and still has some fatigue in his hips when raking leaves or doing things he normally does not do. He has 3 kids and is very active with his family. I was also told by my Doctor that I should warn my Son that Autoimmune diseases are heriditary and I should warn my Son! This is the kind of stuff that further study and education will help get the correct information out to the Doctors quickly so that the correct dx can be made. We are doing a great job of keeping the word about GBS current!
AnonymousJanuary 29, 2007 at 12:44 am
Hi Teresa Ann and LadyKit et al,
It does get confusing when you’re presenting so many different symptoms to doctors that may or may not be related. In my case, I also fell off a ladder two years ago, significantly injuring my neck and back. I hurt in so many places I can’t begin to figure out what begins where and how to explain it. I chalked up so many of my problems to the accident, but realized it didn’t explain all my joints hurting.
It definitely helps to have a well-informed doctor. For example, dual joint pain on both sides of the body can indicate arthritis (RA usually present in more joints than Osteoarthritis), but such pain is also present in Lupus. Other signs you may not think are related (such as rashes and headaches) may indicate Lupus rather than RA. And then, trying to tie in muscle fatigue, balance problems, spasms and tingling sensations, and the doctor might think you’re a true-blue hypochrondriac! Yikes.
I’d be really interesting in hearing more about your friend with the operation. My hands are still operational, but typing is tiring and painful. As I spend all day at work typing (I’m a market researcher), I really can’t afford to lose that ability. My fingers have lost a lot of dexterity, leaving me feeling clumsy most of the time.
As for autoimmune disease being hereditary, that’s put me in a quandary. I’ve been told that once you’ve had an autoimmune disease, you’re more susceptible to them, which makes sense. The doctor told me today (I’m having another blood test to check for Lupus), that it would be really helpful to know my family medical history. Unfortunately, I’m adopted and have been trying for the last year to wrangle my nonidentifying medical information free from bureaucracy. Hopefully, I’ll get that info soon.
I can’t tell you how happy I am to be on this forum now. For so long, I’ve been ignoring my pain and discomfort, believing that the neurologist I saw five years ago was right and that there was nothing wrong with me. I’ve been so anxious about seeing doctors again, fearful that they won’t understand what’s wrong and just prescribe me pain pills, which I won’t take.
I was so active in my 20s and now feel like half the person I was. I’ve taken to believing I’ve just turned lazy, but the pain reminds me that it’s not just a matter of willpower. As for your question about RA presenting in the legs, I don’t know myself. In fact, I’m regretfully ignorant on the subject of RA, as it is a recent diagnosis and still being questioned.
That’s awesome that you’re in Ireland. I’m in LA, CA and have never been been part of a forum before, an international forum at that! Thanks so much for your conversation.
LadyKit, you are so right about this forum being a welath of information and helping to keep GBS out there. In fact, I was at the bookstore today, reading a book on Autoimmune diseases and this website was listed as a resource in the back. I hope to educate myself more on the subject so I can help spread the word too!
Thanks again all,
AnonymousJanuary 29, 2007 at 11:11 am
Lady you know how I feel about you and Sarah. You have been such a wonderful friend to me and Frank for so many years. My wish would be that someday I will come to Ireland to see you and Sarah. Don’t know that it will ever happen, but I have my wishes and dreams. Tell your Mum that I appreciate her thinking about me. She’s a strong lady and I admire her.
Tell Sarah that Auntie Brandy thinks of her often. I know she will grow into a
wonderful woman, she’s so smart. I miss all the fun we use to have TA in our travels around the world to rescue Princess Susie, weren’t they the good old days? The last time that I talked to Dan “Juan” Murphy, he said to say hello to his Irish Colleen Teresa.
Well my friend, just know I always have you and Sarah in my heart.
Love Ya Lady TA
AnonymousFebruary 1, 2007 at 9:53 am
I am 6 years post GBS. Back to work, some issues with my feet like strange sensations, random pains and am frequently tired. Any vibrations on my hands or arms causes pain. Lately I have been having extreme joint pain in my feet,ankles, knees and hands and I have a igh white blood cell count. I saw a Rheumatoliguist (sp) and she tested me for RA (Xrays, Synovial Fluid, BLood ANA), etc. She doesn’t think I have RA but is now now looking at Lupus. Apparently if you have one auto-immune disorder you are a good candidate to develop another. Lupus, like GBS is a collections of symptoms. If you have 4 of the 11, they say you have Lupus. Apparently there is no DNA footprint for Lupus. I guess my point is that Fibromyalga , joint pains and other symptoms should be looked at ASAP. Good luck all.
AnonymousFebruary 1, 2007 at 4:04 pm
I know exactly what you mean. I’m 30 years (!) post GBS and have a lot of strange symptoms. Currently, I’ve been diagnosed with Rheumatoid Arthritis and now they are also looking at Lupus and MS additionally. I swear, what’s the likelihood? I have numbing in my left side of my face, some speech difficulties and some other annoying stuff. Apparently, if you have one automimmune illness, you can get a host of others…lol I ditto your suggestion on getting these things checked out. I waited five years and now I’m a mess!
Ah well, what to do but try to find the lighter side of stuff?
AnonymousFebruary 1, 2007 at 4:52 pm
We are similar in age, I have been struggling with various autoimmune stuff most of my life. If your interested take a look at this site madgc.org, I don’t think I have given you that link before. It’s the Multiple Autoimmune Disease Genetics Consortium. I am a part of their large study that they completed over the past few years. Take a look if your interested, lots of good information and links. Email me anytime also if I can help or if you just want to talk, jerimyschilz at hotmail dot com
AnonymousFebruary 4, 2007 at 8:42 pm
Now mind yourself, cos one of these days I shall say ‘blow it’ and get on a plane headed your way! But you know you will always be welcome here. I’ll certainly tell Mum – Sarah and I will be up to stay for a few days with her in a couple of weeks. I’m trying to go more often as although I knew my sis did a lot I didn’t appreciate the toll it can take – until I started working with Carers and discovered the toll it takes on them – not only the physical one but the emotional and mental one.
Becca, I best say firstly that as regards GBS I have been lucky.
Some of the things you mentioned hit a memory chord with me – when your neuro said there was nothing wrong with you and especially when you thought that you were just lazy – I’ve heard people say that often, and I was one of them. When I was paralysed a woman came in and gave out to me (turns out she was short of oxygen and had given out to 2 others previously and nearly throttled one of them!) and I truly believed that I must be lying – now whilst I now realise how daft that was, the way I felt is still a memory. When I was a child my appendix burst. As I was put in an ambulance the pain eased and I was concerned that it would be said that I was lying and I’d be in trouble! (well I was 10). I know logically that it is daft because we are not lying yet we still feel as though we might be wrong.
The word ‘lazy’ intrigues me a little. Lazy is when you know perfectly well that you can do a thing but choose not to, simply because you do not want to – no other reason than that. It’s not when you think ‘well, I could do it and I will, in just a minute, when I feel a bit better, a bit more able – I’m sure I could probably push myself out of the bed/off this chair etc if I really tried but just the thought of trying is rather tiring.’ And that is fatigue in a mild form.
After a good few years I have accepted that, when I lie on the couch, I’n going no place for at least a couple of hours (usually about 4-6 hours). My ‘test’ is – if a fire alarm went off, would I get up or would I ask “how close is the fire?” If I am lying on the couch, the answer is ‘how close is the fire, I’ll get up when it’s closer’.
I didn’t know that having had an auto-immune disease could make you more susceptible to having others. Except that I do beleive in genetic pre-disposition to auto-immune diseases.
Would you believe, I had radial palsy a few times (a duff arm basically) and now await the results of blood tests to see if it is an hereditary condition. Whilst I doubt it is, I wouldn’t be overly surprised as I already have a hereditary eye condition (one that apparently is rare. Well, if I’m going to having something rare once, why not have two? They can keep each other company).
I know I’m going ‘off base’ with this but I wonder if this is a female thing – only because I’ve not seen a man say anything similar – yet.
Awesome that I’m in Ireland? Not at all. Sure it’s you that’s halfway around the world!
Okay, I will shut up now. Hurrah.
PS I love this site and I have discovered one thing. This is a rarity (just like GBS). Don’t automatically suppose that other sites are the same. There is something rather special going on here. I’m glad you found it.
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