I'd like to hear from anyone with similar experience to ...

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I'd like to hear from anyone with similar experience to myself...

I've been in chronic pain for 7 years - it started with my feet and that was diagnosed as plantar fasciitis, then achilles tendon pain and, 18 months ago, a lower back pain that left me immobilised for 4 weeks, (that was treated with various anti-inflammatories inc Vioxx, now with Lodine SR (Etdolac)) and now I have stiffness and pain in my feet, knees, legs, and upper body to a lesser extent. Since that episode with my back 18 months ago, I was diagnosed with rheumatoid arthritis and am being treated with sulfasalazine.

I found that sulfasalazine (6 per day) was having little effect (maybe 20-30% reduction in pain and stiffness) so my consultant arranged an isotope bone scan. I've just had the scan results, but they show that I have no degenerative disease, that in effect, my pain has no cause. Now the consultants are out of ideas and recommending I see a pain specialist....

I find it difficult to turn over in bed and have sleep disturbance, and have most pain upon waking, in my shoulders and ribs, and am unable to walk for a while due to foot/ankle pain and stiffness. I'm tired all the time, and sleepy in the afternoon - I take 25mg Dosulepin most nights to help me sleep. I'm desk-bound and experience pain upon standing (feet, legs, lower back)...

I try to maintain a normal life, working as a web-designer, and training & teaching karate - not as often as I used to, thanks to the pain afterwards. I've gained 2st (30lbs) in 7 months, which doesn't help.

My consultant talked to me about the correlation between pain and lack of sleep... and I think is focussing on the "not sleeping too well" symptom which is way more recent than the pain...

Anyone had similar experiences, had more of a positive diagnosis? A better result? Please?

[i:be3fcca0ee]This message was automatically imported from the original Patient Experience[/i:be3fcca0ee]

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  • Posted

    Hi

    I am interested in what you have said - do you find dosulepin helps with your pain and does it really help you to sleep? I just started dosulepin 25mg this week and so far it hasn't done much other than some vivid nightmares and I don't sleep much during the night but then sleep in the morning. I was wrongly diagnosed with rhuematiod arthritis for many years - I knew I didn't have it but hospital insisted I did. Turned out I had reactive arthritis combined with severe allergy to what had caused it (possibly insect bite when abroad). I also have ankylosing spondilitis. I have a lot of pain in my ribs, shoulders and hips which is worse overnight or if I don't move for a while. I have a mostly desk based job but need to get up and move around every 15 mins or so or I end up in too much pain. Luckily I am not working this week or I wouldn't be trying out this drug.

    [i:027c280fb7]This message was automatically imported from the original Patient Experience[/i:027c280fb7]

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  • Posted

    Hi Alison

    Nothing is helping my pain at present, not the max dose of sulfasalazine nor the slow-release anti-inflammatory. Ibuprofen doesn't work any more, nor does paracetamol or aspirin. Tramadol (for "moderate to severe" pain) has a very small effect but huge side effects.

    I find that dosulepin merely makes me feel relaxed (after about 1 hour or so), and that, in the early days, was enough to get me to sleep and help me sleep right through the night. That has had no effect on my pain though.

    Your symptoms sound quite similar to mine (ribs, shoulders and hips, except my pain is most noticable on the feet and lower back), in that I have to keep moving to reduce the pain, which I why I persist with my karate training (even though the pain the next day is extreme). My consultant (at Harrogate Hospital) initially thought of ankylosing spondilitis, but genetic testing ruled that out so he assumed rheumatoid arthritis. Like you, I didn't believe that diagnosis (it seemed like a catch-all to me, in the event of finding nothing, assume RA). Interestingly, the consultant always looks at the joints in my hands (never had ANY symptoms there) yet has never once looked at my back (which constantly feels like its made of glass).

    There are other hereditary diseases in my (large) family... I have asthma, eczema and hayfever, four (out of 10) of use have bad backs and my brother has been diagnosed with spastic paraplegia (originally thought to be MS).

    How does "reactive" arthritis differ from rheumatoid arthritis? I really feel like I need a positive diagnosis in order to cope with this....

    [i:d71db9ec02]This message was automatically imported from the original Patient Experience[/i:d71db9ec02]

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  • Posted

    I have been on crutches for 4 years now, 1st thought was achilles tendonitis, 2nd was poly arthritis, 3rd depression (which i have had since i was a small child) now the docs say i have CHRONIC PAIN SYNDROME and i will never be without pain!!!

    I take 225mg of Dosulepin Nightly (been on it 3 years now), Co-codamol 30+500mg 2 nightly with 100mg of tramadol, 1 migraleve (pink tablet) nightly, 10mg of loratadine (for any allergic reactions and Hayfever) nightly and 20mg of Omeprazole nightly (to control the ulcer ibuprofen gave me). I sleep for up to an hour with that lot-then the pain wakes me up again. i wait to take more co-codamol and tramadol then sleep for another couple of hours. The pain is unbelievable from my Neck through my back to my toes. I have a high pain tolerance-3 Children with gas and air, nothing with my last one!!!BUTNOTHING STOPS THIS PAIN!!! If they can send people on holiday to the moon in the next couple of years, they might start looking for something to help the people on earth permanently with something to let them need a normal life a bit more!!

    Good luck to you all Maggi.

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  • Posted

    I have had some of the symptoms you describe for many years. I read that cod liver oil is better than the best anti inflamatory drugs and have found it a real help. I decided it didnt work once and stopped it. Within 24 hours I realised is was helping and have taken it for 5 years. My bone and joint pain is much better. Try it as well. best wishes Peter
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  • Posted

    I have had some of the symptoms you describe for many years. I read that cod liver oil is better than the best anti inflamatory drugs and have found it a real help. I decided it didnt work once and stopped it. Within 24 hours I realised is was helping and have taken it for 5 years. My bone and joint pain is much better. Try it as well. best wishes Peter
    Report / Delete Reply
  • Posted

    I have had some of the symptoms you describe for many years. I read that cod liver oil is better than the best anti inflamatory drugs and have found it a real help. I decided it didnt work once and stopped it. Within 24 hours I realised is was helping and have taken it for 5 years. My bone and joint pain is much better. Try it as well. best wishes Peter
    Report / Delete Reply

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