New to fibro and need some help and advice...

[Fairycake1973]

Hello everyone

I started to feel ill about 2 years ago after a severe viral infection - just never seemed to get over it 100% - and have gradually gotten worse ever since. The symptoms were (to name a few!) fatigue, insomnia, headaches, weight gain, joint pain and some other "minor ones".

It took me 18 months to be taken seriously by my GP (the usual you're depressed, you're eating too much, you're stressed....) until she finally agreed to send me to see an endocrinologist. I'm very lucky that I have private insurance through work but the first guy was useless, insisted all I had was sleep apnoea. I went to another chap who was lovely and ran lots of tests (including thyroid and cushings). I have discovered that I very low vitamin D, raised cortisol levels and a 5mm "growth" on my thyroid, neither of which are deemed a problem at the moment. He did, however, say three weeks ago that I had fibro and sent me away with a promise of an appointment at the sleep clinic and some amitriptyline and that was it.

I've been trawling through the internet but, and I'm sure you've all experienced this, I find myself getting even more confused at the symptoms, solutions and "specialists" so I'm hoping that maybe someone here can point me in the direction of my next option. I want to try and get a decent consultant who understands the issues and can help manage the pain etc or send me to a pain clinic or something (I live in Hertfordshire and work in London). I really don't want to rely fully on tablets.

Basically I'm struggling to keep it all together. I have no family that I can really lean on (they are of a very selfish nature and have doubted me) and am having problems with work believing that these symptoms are "real". I've tried to explain that I can go weeks on end without it affecting work (although weekends are basically written off) when it's suddenly as if my body goes into shut down mode and I can't get out of bed. Last week I had a stomach flu and I'm still trying to pick myself up after it. I'm generally a very upbeat person who always tries to stay positive, smile and laugh in the face of life's crap but I really feel that I'm starting to spiral down into a hole that I'll struggle to get out of.

Thanks in advance for your help.

x

[janlou]

Hi, I have been the same as you for nearly 2 yrs, backwards and forwards to GP, your pain is real and you need to keep telling your GP that its not depression. It took 15mths for me to find it was Fibro and the same time to be told its CFS aswell. Also have low vitamin D. Keep on at your GP, and also tell work to make changes for you, they have to do that, good luck and here if u need a chat.

Jan x

[Fairycake1973 in reply to janlou]

Thanks Jan. It helps to know you're not alone and not going totally mental! I just hate the feeling of now knowing what to do next...am sure everyone here has had that feeling at one time or another! Good luck to you too x

[Bearess]

Hello fellow sufferer welcome to the site where we all understand the terrible downs of the dreaded fibro I'm sure you will be given lots of different advice on here - we all mean well different solutions work for different people - I'm sure though, that we all agree, that "pacing" yourself is a good idea - I have recently been on a government funded programme for sufferers of fibromyalgia - it lasted 6 weeks for one day a week - we learnt the importance of a good healthy diet / a positive attitude / a good relationship with your g.p. / a regular meds review and support from like minded people were major factors in helping us to accept our "bad days" but to be as normal as possible on our "good days"........we all reported that depression was a very easy illness to "slide into " because of our pain and frustrations

I am a very upbeat person too and I refuse to let this condition totally ruin my life

I keep as positive and active as possible

I don't over medicate myself but I do take pain relief tablets - I refuse to suffer

I "pace" my activities, leaving the less important chores for my "good days"

I try not to feel guilty if I have to cancel an arrangement / I tell myself, if people don't believe I'm ill - then that's their problem, not mine !

I indulge myself in warm baths and fleecy pajamas on my "bad days" I also catch up with reading and t.v.

I have a poor sleep pattern ( as most sufferers do ) so I don't feel guilty about having a "power nap" throughout my non busy days !

I do try to get some form of exercise everyday, no matter how much I ache, even if it's a little stroll, very slowly around my small garden - I always feel better when I've had some outside air

I hope this has given you some insight into my life as a fibro sufferer - we are all different and this is only my experience of the condition.

After typing all this, I'm absolutely shattered - it was worth it I'm going for an early night now - maybe i'll sleep, maybe I won't - but one things for sure - eventually I will -our bodies can't survive very long without sleep, it's a medically proven fact

Regards

Tina

[Ginsing]

Hi and a great big welcome this is a excellent site very helpful . Also positive and shifty hope you enjoy it and find some answers. read the fabroaction pages good stuff on . There. Xxgins