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Specialist referal at last!

  1. 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!

  2. Hi

    Sorry to hear your story and all the pain you are in. It is so difficult for people to understand fibro as we can look well. If we had a broken arm we would get more sympathy. I have had fibro for the last ten/eleven years. Only was diagnosed about three years ago when i saw a lovely rheumatologist who took me seriously and also when I finally found a really good gp. I like you find the ibs symptons the hardest to deal with. I would rather have the pain than the inconvenience of ibs. I do hope you get the answers you are waiting for. The rheumatologist went through a book on fibro with me and each time he said one of the symptoms I had it. He said the book could have been written for me. I have found since having fibro that light exercise is really helpful and keeps me more mobile. Also I have found keeping a diary about pain, how I am feeling, any achievements have helped me deal with what is going on. It is a way of getting everything of my chest.

    I hope all goes well for you and if you want to talk anymore just reply to me.

    Tess x x

  3. Thank you.

    I have an appointment with a specialist who is meant to be really good on April 21st. I did have an earlier appointment but it had to be rescheduled as they had accidentally put me in with the endocrinology clinic instead of the CFS/Fibro clinic.

    Since my last post I have been fro a scan on one of my very painful shoulders. Discovered that I have tendonitis, bursitis, and arthritis as well as a rotator cufff tear. Falling apart!!

  4. Hi GM and Tess,

    I`ve had fibro for about 4yrs now and like Tess I have a good GP who is helpful and supportive. In December I was in so much pain in my back and saw a couple of locum GP`s. It wasn`t until I saw my own doc in January that I was found to also have Osteoporosis and a crush fracture in my spine! Now I have to try and combine the things that are good for both conditions, but the one common factor is that light exercise helps both, so once my fracture started healing I got back to doing some exercise and I find that it does help. the worse thing for me with the fibromyalgia is the chronic fatigue, I have to be very careful and pace myself to be able to get even the smallest things done. Coming a close second is the IBS and then pain. Also I have been told that a low glyceamic index diet is good for fibro, but unfortunately can`t try that cause it`s not good for the osteoporosis! Hope your appointment goes well on 21st, do come back and tell us how you get on. Tess, I hope things are well with you and your family, we must catch up sometime!

    Linda x x

  5. Hi Linda

    Was good to see you back on the site. Hope you and your family are all doing well. Lizzy has been asking about you and whether I had heard from you. I am not too bad still got usual aches and pain. Also still not sleeping too well and only Take care. Tess x x

  6. Hi Tess, nice to find you stil use the forum! Not been about for a while have found things very difficult since christmas, it seems like every week there is some problem with me or Ray. Following my scan for osteoporosis had to have blood tests and got a letter from GP yesterday to say my Vitamin D levels are low so now need to take meds for that, will start to rattle soon! Hope your family are all doing well, especially the little ones and Claire, Chris is now working at hospital, he just got a new job at the right time, soon after he handed his notice in, all the support staff were made redundant! Can`t remember if I sent you my mobile number?

    Take care,

    Linda

  7. Hi Linda

    Like you said you will rattle soon with all the tablets lol.

    It is good that your son has got another job and I hope it is all going well for him. How is your daughter doing living on her own and her work. The little ones are growing up to fast. Molly is now 8 and Sophie is 3. Poppy is now nearly 15 months and walking everywhere. Just dosen't want to sit down. Got everyone coming next weekend for dinner and will be 13 of us. Thats 13 Easter Eggs to give out as well. Couldn't do it this weekend as Steph went with her partner to York to visit his family. Be like when we all get together at Christmas. I hope they get you sorted out soon. We have been busy decorating our living room over Easter. Stewart has just started his night shift and got three more nights to go. Claire is doing really well and for the last six weeks has been travelling to Melbourne near Cambridge doing her paramedic course. She has passed all her exams so far and has two more weeks of her course to go and four exams. After that she will be a qualified paramedic. She then has four weeks in placements. Two weeks in theatre, 1 week in A and E and the last week on the heart unit. She will be doing these at Hinchingbrooke hospital. We are so proud of her and she has worked really hard. Her health has been ok since she had her problems with appendix etc. You did give me your mobile number and tried to send you one. Do n't know if you received it. Could you PM me it again so can check i have the right number. Looking after Sophie and Molly tomorrow for the day so that will be fun. Have to be up and ready for them to come about 8. Got them again on Thursday because of the Easter holiday.

    I am now taking some tablets for irritable bowel called Mebeverine. The only thing is you have to take 20 minutes before food. Not got use to taking them before I eat. Keep forgetting lol.

    Will have to have a timer to remind me. The sleep still not good but keep doing my exercises. I hope Ray is doing ok. Well take care. Tess

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