link between arthritis and in adulthood fybromyalgia

Kingsbridge
Kingsbridge Member Posts: 6
edited 10. Jan 2013, 10:13 in Living with Arthritis archive
My son was diagnoised with chronic juvenile rhuematiod arthritis aged 4yrs, experiencing flare ups to knee joints every couple of years/under stress - moving house/ glandular fever etc. In adulthood no further flares but aged 36years suffers from the damaged caused to his joints but more recently was diagnoised with fybromyalgia (5 years ago) and is suffering on a daily basis and in the winter months experiences major flare ups. It has been mentioned there could be a connection to both conditions. Many rheumatoid arhtiritis discovered to have fybromyalgia? It has also been suggested that in some cases "unresolved emotions" can contribute to fybro or the severity of it. Has anyone had experience of this? My son, adopted, had a tragic start in life and unsuccessful relationships and I wonder how this could have contributed to the state of his health now. It know it is hard to say, but I`m trying to support him and understand this complicated condition.

Thanks
Keswick

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Kingsbridge, it's nice to meet you and I hope we can be of help.

    One of the problems with fibro is the debate about whether it exists or not. My view (but I am NOT a doc) is that is has to be on the arthritis spectrum somewhere because its nature is so similar to an auto-immune arthritis (and there are many versions of that!) Like all auto-immune types it thrives on stress, agitation, unhappiness, ill-health and I don't think there's much to be done meds-wise for it. We have quite a few on here who have fibro and I hope they will spot your message and pass on their experiences of dealing with it.

    As for your lad's not-so-good start to life I doubt anyone could say that that is a factor with his current situation but one's ability to both process and deal with frustrations and disappointments that crop up throughout life is. Some handle setbacks better than others but for those who cannot deal adequately with them, well, they can find life harder; add auto-immune troubles to boot and it's a tough life indeed. Has he ever had any form of counselling? DD
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I'd endorse all that DD has said. Arthritis does thrive on stress and I imagine many other conditions/diseases do too. We all want to protct our children (of any age) from pain but it can't always be done. Learning to do deal with stress a little better might help, though. Has he tried a Pain Clinic?
  • Kingsbridge
    Kingsbridge Member Posts: 6
    edited 30. Nov -1, 00:00
    Thank you Stickywicket and Dreamdaisy. Yes to both your questions. My son attended the pain clinic and didn`t find it useful. He dropped out on the cognative - saying they didn`t udnrstand why he wasn`t angry with the pain. He has lived with chronic pain since the age of 3 and doesn`t stress about it - or at least he doesn`t think it causes stress. Counselling, he has recently been seeing an osteopath, privately, who is training in counselling. He attends to receive the deep back muscle massages/accupuncture and takes minerals and vitamins and advised by the osteopath. Due to the flare up we thinks due to the cold weather, he has not been able to attend just as they were embarking on a more counselling basis, trust aving been gain by both parties. It is the osteopath who has suggested "unresolved emotions" could be a significant factor in flare ups of rheumatiod and fyrbomyalgia - not too dissimmilar to ME. This man is my last resort in an attempt to help improve my son`s quality of life.
    Thanks
    heather
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's good to hear from you again. I am tired (thanks to pain) and need time to re-read your post and have a think; I hope to reply tomorrow. Please stay in touch - quite a few of us can see things from all sides and I think that those on the 'outside' sometimes have a harder job in coping with arthritis than the one living with it - arthritis is an equal-opportunities disease. :roll: DD
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    Hello Heather, I was touched to hear your story about your son Life can be so hard at times and watching your loved ones suffer must be awful. I understand the pain you yourself are going through as I have a daughter who suffers with long term illness. Dont know if I can help or not but ill tell you what little I know. I’m with DD on this one although I myself suffer with Fibromalgia RA and PsA I find the mental attitude and wellbeing is so important, its like any illness if your feeling low its harder to fight it. When you have suffered pain for such a long time you become use to that way of life and you do tend to cope more or should I say better than others just starting out. I done the pain centre it was a six week thing and yes its a bit like teaching granny to suck eggs. I got the PsA in 1972 and RA in1982 A few years ago following an argument with my Rheumy I was also diagnosed with the Fibro, mainly because of unexplained chest pain. I think Modern day Doctors believe in Fibro but many Doctors see it as a type of psychosomatic illness, Stress and depression do not help the situation. And many GPs have a limited knowlege of what they are dealing with. I do hope you are both feeling better soon
    Colin
  • frogmorton
    frogmorton Member Posts: 28,053
    edited 30. Nov -1, 00:00
    Hi Heather

    I just wanted to welcome you to our forums and say I do hope you will stay and feel supported by us lot. You have picked a 'quiet' time of year to join us (It being Christmas/New Year), but really there are lots of lovely folks on here to support you.

    My input is pretty useless to be honest, but I did want to say that I think it's fantastic your son has such a caring Mum and that there is a helpline nuber at teh top right of this page if you ever wanted to call them. I have personally found them very supportive - having bawled for most of one entire call :oops: Not sure of their opening hours just now with it being teh festive season

    Love to you both

    Toni xx
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Hello

    Just wanted to add my support to you and your son. I have found that my arthritis is always worse when I'm under stress or over worked/ tired. Managing life to reduce such things can make a big difference. I'm not sure how far past/suppressed problems impact on the arthritis though because generally, once the problems have passed, life gets better with my arthritis but that's just my personal experience. If your son would like to join us on here he'd be well supported. There are others with fibro on here and I know I've gained much from discussing my conditions with others who are in a similar situation, not just in terms of meds and treatment but also the social and other implications of arthritis.
    Good luck to you both,
    LV xx
  • Kingsbridge
    Kingsbridge Member Posts: 6
    edited 30. Nov -1, 00:00
    Aww thank you all for reading my post, it is comforting. My son unfortunately has always backed away from support groups/forums sadly - I think the pain clinic putting paid to it. He believes the major flare ups are due to weather changes and it was last year in December during a major flare up that his work paid for a private assessment, so I can`t doubt it. The triggers are difficult to define. He has been struggling to go to work (part time 3hrs a day in a call centre) over the last 6 months before the flare and we cannot put our finger on it, the chronic fatguie seems to be a major part. He has been tested for ME. All ok. However as mentiioned earlier he has unresolved emotional issues, which his friends and the family feel are a major factor in his health on a day to day basis. He lives on his own and I`m convinced if he had a partner living with him he would have someone to share his life with (I suspect but he denies depression) he would be 50% better. He talks to someone abroad via the net, there`s no chance she will come over here! But he is a dreamer. We can`t cure the fibro or mend the RA, but he would have a better quality of life. Although it distresses me to see him like this I do his cleaning/change his bed/shop for him when he is in a flare, and not so much when the flare is over, but he still needs support.
    Sorry to waffle, but I find it helpful in a away to write down my feelings - let of a bit a steam. thank you for reading the post.
    byee for now
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Please keep writing your feelings down for us. All on here know the value of that. Even when others can be of no practical support, knowing that they care does help.

    All sorts of things can trigger a flare. The weather may well be one though I'm not sure if any proven connection exists. We all grasp at straws in an effort to gain some control over this arthritic beast but, in all honesty, I think I can say that, for me at least, when the meds are working well, I'm not bad and every time I've flared badly, I've had to have my meds fiddled with.

    Stress, however, does make things worse and, if he could manage to deal with those 'unresolved emotional issues' maybe that would help considerably. It is hard watching those we love suffer but sometimes it is all that we can do. Does he welcome your help or does he resent it at all?
  • Kingsbridge
    Kingsbridge Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi again,
    My son will listen and sometimes agree, notice the chips in his life, but at the end of the day he has to be self motivated. I have learned when to "back off" I try to keep things good between us, life is too short. He is our only son. He mulls things over in his own time. I sow the seeds, but sometimes it takes courage to change your life, or give something up. He says he is happy and will take what life throws at him, but I feel he can take control more. I think when he is ready, things will change. How long will that take - how long is a piece of string!
    nite nite
    and thank you
    Kingsbridge
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Hi Heather, welcome from me too hun.
    I hope things are on the mend for your son, he has obviously had a rough time lately..
    I had glandular fever twice as a child, even though we were told you could only have it once by some people.. I have had a lot of problems with similar symptoms on and off since but never made a connection, maybe there is something in that? I also have a liver disease, Gilbert's Syndrome. It's nothing really but I've always been hit harder by colds etc as I think there is a link to the immune system. I now have sero-negative inflammatory arthritis, again, maybe all of it is linked?
    Sorry, started waffling then :oops:

    Best wishes mi dear......

    Keep posting


  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    Hi Kingsbridge,

    I've got a slightly different view on this as I don't feel my arthritis pain gets worse or I flare up when I am stressed but I am more vulnerable to infections and the like at those times. I don't know much about fibro but believe that fatigue is very much part of the condition and when you are tired you often don't feel like taking on the challenge of sorting your emotions out, it just feels too hard.

    I'm not at all sure that fibro is an auto immune disease and don't suppose it is helpful to add more onto his plate but would suggest if there is an Expert Patients Program in your area you tell him about it. It is not therapy based but just a group of people with chronic conditions learning some helpful stuff. Very low tech but immensely useful and it might help him manage his flares better. It's all on the internet or through his GP. It's free.
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hi again,
    My son will listen and sometimes agree, notice the chips in his life, but at the end of the day he has to be self motivated. I have learned when to "back off" I try to keep things good between us, life is too short. He is our only son. He mulls things over in his own time. I sow the seeds, but sometimes it takes courage to change your life, or give something up. He says he is happy and will take what life throws at him, but I feel he can take control more. I think when he is ready, things will change. How long will that take - how long is a piece of string!
    nite nite
    and thank you
    Kingsbridge

    Wise words, Kingsbridge. People change their own lives as and when they want to.

    Salamander, I've been motivated to check out fibro (about which I know nothing :oops: ). Some sites do seem to regard it as an auto-immune condition but, perhaps significantly, not the NHS site nor the UK Fibro one.
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    hi Sticky, yes I looked too. Got a friend with fibro and was never mentioned. Happy New year!
  • Kingsbridge
    Kingsbridge Member Posts: 6
    edited 30. Nov -1, 00:00
    Thank you Salamander - I`ll investigate the Expert Patients Program for this area and let you know.
    Byee for now
    Hapy new Year!
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, I have oa and fibro, although my oa could well be sero neg ra!

    I think that the fibro is linked to the arthritis, although the arthritis is painful and pain does make you tired, my fibro fatigue is different to ordinary fatigue, it comes out of know where and my brain is like cotton wool and I will just doze off, even when just sitting at the computer! :oops: As for reading, it puts me to sleep as soon as I start.
    Like you, at one time I was negative about fibro and thought it was just a busy doctor's way of getting rid of you, but now I know different. And as someone says stress is almost certain to bring mine on. I would'nt like to say whether its arthritis first, fibro 2nd or whether one is a symptom of the other.
    Love Sue
  • ShulaArcher
    ShulaArcher Member Posts: 174
    edited 30. Nov -1, 00:00
    Hello Heather

    I've just read through all the messages here and as a fibromyalgia sufferer thought I would add a little more. The main symptoms, as you know, are pain, tiredness and sleep disturbance. These tend to exist in a cycle - the sleep disturbance (eg from pain or anxiety) leads to insufficient restorative sleep which leads to fatigue and pain. In my own experience, I can just about remember what it feels like to wake up feeling refreshed - life is completely different. It seems to be the sleep and relaxation part of life which is the key. I take Amitriptyline (often given to fibro sufferers) as a muscle relaxant, to help with sleep. I was also advised to exercise but it's only recently that I've learnt how to swim and I really enjoy doing that - it helps with my osteoarthritis too. Too much, though, will lead to even more fatigue so it's a question of pacing. Exercise promotes sleep and improves a sense of well-being so it's a key factor. Learning to relax is also very important (easier said than done at times).

    My Rheumatologist gave me a great booklet (from Arthritis Research UK) on Fibromyalgia and told me to ask members of my family to read it so they would understand what I experience. That in itself was very useful and I would recommend getting a copy (see their website).

    Hope this is helpful
    Shula

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