Hello

RedRaven786
RedRaven786 Member Posts: 15
edited 2. Aug 2017, 08:28 in Say Hello Archive
Hello everyone new here in constant pain docs rheumatologist and pain team can no longer help me so glad to find this. Please tell me any tips to help cope. Degenerative disc disorder Rheumatoid arthritis Raynaurds syndrome autoimmune disease Fibromyalgia Im 33 and bound to a chair when out and a stick when at home.

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Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Hi Redraven and welcome to the Arthritis Care Forum.

    Sorry to hear that you have constant pain and a range of auto-immune arthritis disorders :(

    You may like to take a look at our section Managing Pain on the Arthritis Care web site to see if it has any ideas that will help: https://www.arthritiscare.org.uk/living-with-arthritis/managing-pain

    You can also ring free the Arthritis Care Helplines Monday to Friday, 9.30am-5pm on 0808 800 4050 for ree and confidential support.

    All best wishes
    Brynmor
  • stickywicket
    stickywicket Member Posts: 26,333
    edited 30. Nov -1, 00:00
    Hello and welcome from me too.

    Constant pain is no fun at all, is it but, unfortunately, it seems to be par for the course with arthritis. I was diagnosed at 15 and, by the time I was 35 had two new knees. The hip replacements came later and several joints, including ankles and wrists, have fused themselves. I, too, have to use a wheelchair for anything lengthy (Going round our local, enormous supermarket is lengthy these days :roll: ) but I do walk whenever I can on the 'use it or lose it' principle.

    I'm not sure what tips I can offer. As I said, I keep as mobile as possible. For pain relief, I take as little as possible as I dislike (and fear, with my lack of mobility) feeling spaced out. I have always found distraction to be the best way of dealing with pain. I can distract myself by reading, watching sport on TV, listening to the radio or doing crosswords and sudoku either on paper or online. I also think it's really important to have stuff that I really enjoy doing in a non-sedentary way. Well, sometimes, like cooking and cleaning, I don't exactly enjoy doing it :wink: but I do like the feeling of achievement I get when I've done it.

    I'm a bit concerned that the rheumatologist and pain team can no longer help. Which DMARDS / biologics are you on or have you tried? What went wrong with any that you had to stop? What have the pain team tried? Has no-one ever offered physio?

    Sorry for all the questions but it's hard to help without a broader picture.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • RedRaven786
    RedRaven786 Member Posts: 15
    edited 30. Nov -1, 00:00
    Have tried cotisol injections nerve blockers am on numerous medications. Have been offerd physio but the DDD proves difficult to do that with. The rheumy said I fit into the nothing will help category.

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  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hi, it's nice to meet you but I am sorry you have had to find us. I have psoriatic arthritis (PsA), OA (aka DDD?) and fibro ([plus controlled asthma) and, like you, have access to a wheelchair and use a rollator when I'm out and about. All my toes, both ankles, knees and hips are involved plus other useful joints. I prefer to use the rollator because, although it hurts to move, I need to protect what ROM and muscle strength I have and that is the way to do it. Pain is the constant in our conditions and, by its very nature, makes us fearful about physically doing too much which means we very often don't do enough which leads to more pain: it is a vicious circle.

    I found that life became much easier once I forgot what pain-free felt like - that is one Holy Grail that can never be found because it doesn't exist. I am in my 21st year of this malarkey (I began aged 37) so have been able to come to terms with the disease and its impact on my life. I keep my pain relief to the minimum so I can safely get on with things, I prefer that to existing in a state-sanctioned-and-funded drugged fog. I still do my post-op exercises and will shortly be doing some work with a personal trainer to further develop these - I am sure this will hurt but, as I will tell myself, in a different and positive way. I have a sports massage on a regular basis and that helps to ease things albeit briefly: again not moving enough can lead to toxins accumulating in one's muscles which leads to cramps and other troubles so my masseur is useful for shifting anything that has done so.

    Have you read The Spoon Theory and There's a Gorilla in my House? Both articles are on the web and can be useful for family and friends to read so they gain a better insight into the difficulties we face. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,333
    edited 30. Nov -1, 00:00
    The rheumy said I fit into the nothing will help category.


    :shock: :shock: :shock: My first reaction is to advise you to change your rheumatologist. How can anyone help you with that attitude?

    I'm still wondering which medication you've tried for your RA. Steroid injections are always a bit hit and miss in that they work for some people sometimes but are not a substitute for proper disease modifying meds. I've never had nerve blockers. They are presumably for the degenerative disc disease.

    Disease modifying meds include methotrexate, sulphasalazine, hydroxychloroquine and leflunomide. Biologics include humira, enbrel, infliximab and cimzia. Have you been offered any of these?

    I can see how the DDD will make physio difficult but the NHS does regard it as so important for lessening the pain that it has produced its own video on it.
    http://www.nhs.uk/video/Pages/sciatica-degenerative-disc-disease.aspx . As for exercising the other joints, you'll have to go very gently and carefully at first but it really does help to keep us mobile and ease the pain. And it just makes life more enjoyable because we can do more.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • frogmorton
    frogmorton Member Posts: 26,890
    edited 30. Nov -1, 00:00
    Hello and welcome form me too.

    I wonder whether you have had a 2nd opinion too you poor thing. 'Nothing will help'?? that is not a good thing to be told :(

    The good news is you have found us lot and we are used to coping with chronic pain too like yourself.

    Do come along in and join us any forum at all you will be made very welcome.

    Love

    Toni xxx
    Love

    Toni xxx
  • RedRaven786
    RedRaven786 Member Posts: 15
    edited 30. Nov -1, 00:00
    Am on amitriptyline amlodopine hydroxychloroquine. Tried gabapentine didnt help.

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  • stickywicket
    stickywicket Member Posts: 26,333
    edited 30. Nov -1, 00:00
    Amitriptyline and gabapentin are taken by several people on here who have back pain. Amlodipine is given for high blood pressure. (I took it briefly. ) Only hydroxychloroquine is a DMARD for treating RA and it's a mild one often taken in conjunction with others. If your RA is not under control it would seem that your rheumatologist can actually do a lot more for you. Which joints are your worst?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • RedRaven786
    RedRaven786 Member Posts: 15
    edited 30. Nov -1, 00:00
    Amlodopine for Raynaurds syndrome

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  • RedRaven786
    RedRaven786 Member Posts: 15
    edited 30. Nov -1, 00:00
    All my joinrlts are bad but worst ones are hands feet and hips

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  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    I was on amlodipine for a while to treat my high BP but it wasn't effective so my GP changed me to Ramipril (both taken in conjunction with a water tablet). For my PsA I have taken (in various combinations but never solo) the DMARDs sulphasalazine, tablet methotrexate, leflunomide and cyclosporine, plus the NSAIDs Celebrex, Naproxen and Diclofenac. I know from reading on here that amytryp is used to aid sleep or help depression, whilst gab is used for nerve pain (but this 'knowledge' is based purely upon what people have posted). I have also tried the biologics infliximab, Enbrel and humira. Pain relief for both the PsA and OA has ranged from basic paracetamol, cocodamol in varying strengths to tramadol and oramorph. I haven't tried pain relief patches but I know they are an option. Depression was diagnosed late in 2011 after I was told I had OA in addition to the other, to this day I take a small daily dose of Citalopram which helps me cope better with stuff than I otherwise might.

    I suspect you are not receiving the best help or advice that could be available. My rheumatologist deals with the PsA and fibro, my GP with the OA, pain relief and depression but each are aware of the other because I keep each one informed as changes to my treatment are made. There are four people involved in my relationship with arthritis: me, my husband, my GP and my rheumatologist but I'm the one at the sharp end. It took years for someone informed and medical to realise that I was dealing with an auto-immune arthritis but that was because my symptoms did not present in the 'proper' way. Is anyone else in your family similarly affected by any of your conditions? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • RedRaven786
    RedRaven786 Member Posts: 15
    edited 30. Nov -1, 00:00
    With the discs my mum and her side all have bad backs. I do have autoimmune diseases low white cells. Depression since childhood anxiety since 2005 after I was attacked.

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  • stickywicket
    stickywicket Member Posts: 26,333
    edited 30. Nov -1, 00:00
    I checked out amlodipine and found two relevant bits of information. Firstly it is, indeed, used to treat Raynauds as well as high BP. Secondly, the Raynauds itself is what makes many of the usual DMARDS unsuitable for you.

    It might be worth you reading up on Raynauds from a reliable site such as NHS http://www.nhs.uk/Conditions/Raynauds-phenomenon/Pages/Causes.aspx It might be the RA which gave rise to it or it might have come by itself. Either way, although the docs can't do a great deal, there is quite a lot you can do for yourself. (Personally, I always find this empowering.) This is what the NHS site says you can do for yourself:

    The following advice is recommended for both primary and secondary Raynaud’s.

    Keep your whole body warm, especially your hands and feet. Wear gloves and warm footwear in cold weather.

    If you smoke, stop. Quitting smoking will improve your circulation, which should help to improve symptoms.

    Exercise regularly, as this helps to improve your circulation and reduce stress levels. For most people, 150 minutes of vigorous exercise a week is recommended.

    Try to minimise your stress levels. Regular exercise, eating a healthy diet, and relaxation techniques, such as deep breathing or activities such as yoga, can help. You may find it useful to avoid stimulants such as coffee, tea and cola.


    Exercise is obviously difficult for all of us, not to mention 'vigorous exercise :lol: ) but, with help from a physiotherapist, there is nearly always something we can do which will help a bit and slow down the progress of the things going wrong.

    Relaxation will also be difficult if you are prone to anxiety and depression but it will also be all the more essential.

    Healthy eating? For me, this just means not buying stuff like sweets, pastries, crisps etc. What I don't have in the house I can't eat. I used to always have a chocolate biscuit after my lunch. I decided it was healthier not to but I simply didn't put it on my plate with my sandwich. I just told myself I could still have one but I'd have to walk back into the kitchen for it. When joints are very achey that's a major decision.

    I really would be surprised if nothing can be done to make your life easier. My first port of call is usually my GP. He is the one who has access to all the consultants' reports and who can tell you why you can't have certain treatments and what might possibly be available. The anxiety and depression might be large factors in holding you back from a better life but these are not insurmountable obstacles though they may seem so if they have been with you for some time.

    Maybe you could talk this through with our lovely Helpline people?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • RedRaven786
    RedRaven786 Member Posts: 15
    edited 30. Nov -1, 00:00
    Thank you for the advice much appreciated... I shall look at getting some gloves to keep my hands warmer I wrap up most of the time anyway regardless of weather. My gp isnt good with me need to see a different one. Have tried yoga and pilates can only mangage a few poses before its too much. Hubby is a personal trainer and tries to help me with a few things but even he says I should stop due to the pain of it.

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  • stickywicket
    stickywicket Member Posts: 26,333
    edited 30. Nov -1, 00:00
    You are entitled to see any GP in the practice but also it's very easy to change to a different practice. Just turn up at the new one (Do some research first among friends), preferably with a repeat prescription form so that they can see what you take and not delay in prescribing, and they do all the work.

    Never accept that nothing can be done. A physiotherapist who is aware of all your problems can tailor things to your needs. You need someone who knows when you need to stop and when you need to push on through the pain. Do you swím? Have you tried hydrotherapy?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright