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Hi all,

ive been having problems since last August. It started with pain in my left arm, shoulder and collarbone and tingling and numbmness in my fingers. ive been to see two neurologists for MRI scans and nerve conductivity tests ( all negative) ive akso had a CT with contrast, x rays, blood tests and physio. Well, im 14 months in now and have the same problems with my left side, but added back, rib and leg pain and many memory problems. Im on 50mg of Amitriptyline and 120mg of Co-Codemol a day to no avail!! Ive stopped the physio as im getting worse rather than better and am waiting for referal to the pain clinic. IOver the months ive gone down the MS route, but because my scans are clear I have no diagnosis and have been told I have to wait and see how my symptoms progress. Its pretty dishearening as I am trying to work full time and continue my normal life, but its hard to do. Im really hoping to hear from people who understand the frustration of no diagnosis and daily pain. Right rant over!!!!

5 Replies

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  • Sorry too hear that you are suffering so much, all you can really do is wait and see what is wrong, I do not know what you do in your work, and how you are manageing there, pain control clinic will go through different options that you have with regard to treament, as one of the main problems medics have is conversing to some one in the severity, location and pain score, that will possibly what they will do with you. Also help you relax, They will facilitate, some treatments that have not been thought of. I know this at this time is not very promising.

    One other course that the NHS does is a proffesional patient course, I think that is right.

    They can train you to onverse with the doctors specialists etc. I hope that tthis may help you

  • Hi Emma

    Sorry to hear you are having a rough time - feel free to rant away, I did on an earlier blog! I also have pain and tingling and numbness but in my feet, legs and hands and as yet have not had a confirmed diagnosis, though they suspect small fibre neuropathy. Like you I have had scans and blood tests galore along with the awful nerve conductivity tests but all negative! I was referred to the pain clinic as I could not stand the side effects of the drugs that I was given and am now on 60mg Duloxetine, but unfortuantely it's not working!! This was prescribed by the pain clinic and the staff there really know what they are talking about - it's just that particular drug doesn't work for me. I am going back at the end of this month. I am also on the waiting list for a lidocaine infusion, so I hope that works. I really do understand daily pain with no diagnosis and how frustrating and depressing this can be, so you are not alone. I hope you find some answers soon. #Big hug# Maggie x

  • Sorry to hear that you are struggling so much with your health. I have tried and failed to carry on all the activities that I used to do. Some of my friends and family see this as a failure but I think adaptation is the key for me. I don't care to court flare ups although sometimes they are unavoidable. But unlike yourself I do have the luxury of only working part time. I found the strategies from the pain clinic helpful. Pacing being top tip. But how anyone does this with a full time job is a mystery. For some of us there is no clear diagnoses and thats difficult as others expect one together with a plan of action to get you up and running again. But the more I find out about chronic pain the more I can let others expectations float over me. It's just my own that I still have a problem with. Have you listened to any of the Pain Concern pod casts? People living with pain and professionals contributing. When I need to take heart I listen to one.

    Keep on trucking.

    Wishing you well.

    Ned

  • Hi all,

    Thanks for your replies. Its nice to know im not on my own with this. I am having a hard time working full time and also being pressured to take on more work. I think i will have a look at the pain control pod casts as Ned mentioned.

  • This may sound odd but my mum had numbness and tingling and it was low B12 eventually diagnosed a Pernicious Anemia. Ask your GP to test your intrinsic factor as normal B12 tests do not show it up. Maybe worth ruling it out.

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