confused

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confused

Postby CHleigh9 » Sun Feb 28, 2016 6:52 am

hmm where do I start? Im 23 and Im a student and part time support worker, I have been diagnosed with fibro in the last 12 months but have been suffering since I was 13. Im in constant pain and the relentless fatigue is starting to get me down. I was feeling hopeful after the first appointment with the rheumatologist until I received a letter for my next appointment which was 6 months later and then had it pushed another month. I was feeling optimistic until I had to wait over an hour, further disappointment when she basically told me she had no time and was referring me to an information class, I think I was in there for 45 seconds! I waited another 6 weeks for this "class" which basically told me to push myself but also not to over do it. And that is it. Im on zero medication at the moment I'm not sleeping and I personally feel as though I am doing everything in my power to help myself exercise(when possible), stretching, healthy eating, ingesting every vitamin and supplement on the planet, 1000 baths a day and a permanent hot water bottle attached to me. I've not been to uni in the last 4 weeks as I've been too weak to leave the house. I've yet to make an appointment with the gp regarding medication etc. (my old gp has left so I'm not overly excited about having to go through everything again and I don't think I could see another doctor roll his/her eyes at me without throttling them :-D ) I also think I have some kind of white coat syndrome as I just clam up when talking to doctors :yikes: (probably bad past experiences) Just wondered if anyone can give me any advise with not being beaten by this thing! :-D
CHleigh9
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Re: confused

Postby AlisonL » Sun Feb 28, 2016 9:39 am

Sorry to hear you've had so many negative experiences with the medical establishment. I am lucky in that most NHS staff I have met have been ok. Do you take a bullet point list of symptoms, history, meds, questions to your appointments? I find it helps and I give them a spare copy to put on my file. It helps if you need to complain.
You MUST get adequate sleep. If this means a short course of sleeping tablets, go for it. Your GP is unlikely to give you more than 10 days worth, tops, so no worries about forming bad habits. I know it is difficult when you are a student, but try to follow all the sleep hygiene advice about regular hours, no electronic screens etc - there's tons of advice out there in Googleland. Also review when you take your supplements, some of them have stimulant effects and should be taken in the morning. Some of the herbal sleep aids are quite effective. Also consider asking your GP for amitryptilline. (check spelling!) Yes, it is an antidepressant in large doses, but in much smaller doses can be very effective in promoting sleep and reducing nerve pain. If you get bad reactions to it then ask for Nortryptiline, it's much more expensive cousin, which is made from natural rather than synthetic ingredients and can be better tolerated. Remember that with both of these you might choose not to take them every night but pop one when you feel the need.
Sleep won't be a cure-all, but it is an important first step in getting your life back. Good luck and gentle hugs
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Re: confused

Postby CHleigh9 » Sun Feb 28, 2016 10:42 pm

Hi thank you for your reply, the advise about the bullets point is a great idea and I will do this for my next appointment! Ive tried Amiltriptyline before it made me feel awful so I will ask for the alternative. I use herbal sleep aids but I just don't feel the benefit anymore so the sleeping tablets sounds like a good option! I was just wondering if you've had any experience with things like acupuncture body/hot stone massages etc ? I have very sensitive skin and I am quiet nervous about being stuck on a table with some one prodding me :shock: (and its quiet expensive) Thanks again! Gentle hugs :-D
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