A referral at last!

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Hi everyone.

Im new here. Just thought I'd post as no-one around me seems to understand.

After being in pain for about ten years, I have finally managed to make progress with doctors!

Whilst at uni in about 2003 I was experiencing pain in my shoulders, back, neck and amongst other things also having really disorientating dizzy spells where it would feel like the floor would lift up over my head before coming crashing down. The doc then gave me some painkillers (big fat ibruprofen) which did nothing. I also got referred to a physio for a couple of sessions but again this did little. Many years on having tried lots of other therapeutic treatments such as accupuncture, massage therapy and reflexology I finally gave up and learnt to live with the pain.

Then 3 years ago I developed viral meningitis, was hospitalised for a week and was off work for nearly four months chronic fatigue, short term memory loss, being unable te remember words etc. I would get halfway through a sentence and forget what I was saaying for example. On the one occasion I did attempt to go back to work (about a month after my release) I was part way through teaching a lesson and looked at my class and didnt recognise any of them and wondered what year they were and what I was supposed to be teaching them.

Since then the memory has improved somewhat but my brain is still very foggy, especially when Im tired which is most of the time. I have incredible pain, particularly in my shoulders with milder pain elsewhere all over. I hobble like an old lady when ive been laying or sitting too long (Im 29), my sleep is awful and so im always shattered; some days I can hardly do anything Im so tired. I have no appetite, my jaw locks for absolutely no reason. I also get IBS type symptoms. And thats just the most annoying symptoms.

Last summer I finally found a doctor who took me seriously. I was prescribed diclofenac for the pain and when this didnt work I was given dihydrocodeine (although this actually doesnt work either). He also sent me for blood tests and referred me to a very uninterested Rheumatologist. They didnt find anything. I then had to move house and luckily found another wonderful doctor who took me even more seriously and after giving me diazepam for the spasms in my shoulder, referred me to a CFS/ME/FMS specialist.

I have my first appointment on March 12th (or 13th, I cant remember) and Im over the moon, albeit apprehensive. Whilst I dont particularly want to have anything wrong with me, Im desperate for someone to finally tell me that Im not imagining it or making it up like many of the people around me seem to think.

Sorry for the essay but its nice to be able to have the opportunity to offload to people that understand.

Thanks!

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7 Replies

  • Posted

    Hi my sister has suffered with FA, so you shout from the roof top.
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  • Posted

    Lol! I might just take you up on that. Forgive my ignorance but what does FA stand for? rolleyes
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  • Posted

    Thats ok. Thank you for taking the time to explain. As I said, I dont actually have a diagnosis yet, but it seems to make a lot of sense. I had a mooch around on the internet months ago and came across it. When I read the symptoms, I swear I expected a picture of me next to it. Still, no point getting ahead of myself, will find out in a few weeks I hope!
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  • Posted

    Hi please will you give an update with how you got on? I have ( within the last three months been diagnosed with CFS-andAddison'sDiseease, best wishes Rachel
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  • Posted

    Hi The GM

    First of all, good luck with your appointment. It might be a good idea to make a list of all your symptoms and any questions you have and take it with you. The memory problems you mentioned are part and parcel of FMS/CFS and is often referred to as 'brain fog'. Before I was finally diagnosed I had come to the conclusion that I had early onset dementia since I kept losing track halfway through a sentence!

    Hopefully, he/she will refer you for physio if you think it will help in your case. I chose to see a rheumatologist out of my area because it was at a hospital that specialised in Fibromyalgia. I then had a week as an inpatient where I was offered physio, hydrotherapy and coping skills. The hydrotherapy was wonderful but there are no facilities in my area so the benefits were short-lived. The most useful thing I learnt was about pacing myself and trying not to overdo things so as not to crash the following day. See if the hospital can help you with that but if not there is plenty about it on the web.

    Finally, be careful. There are a lot of despicable people on the web who would love to part you from your hard-earned cash with promises of miracle cures. I only joined this forum yesterday but there seem to be a lot of genuine people here who want to help one another. I hope you find some useful advice and that your hospital appointment answers your questions.

    GW

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  • Posted

    How did your referral go? Was it with a CFS clinic?

    I would love to know as I am on the list for a CFS clinic in Oxford

    Many thanks

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