So it's Fibromyalgia after all

Puschinka

Now I know why my GP wanted to see me in person rather than me just collect the script for the Amitriptyline…
He showed me the report from the rheumy who I had seen the week before and there it was in black and white : something about sufficient tender points in all 4 quadrants of the body as well as extreme fatigue and very poor sleep “…leads me to give a diagnosis of Secondary Fibromyalgia”.
My GP had suspected this after all and it seems the Fibro is a sort of ‘by-product’ of the OA. Needless to say I was a bit shocked. So I started on the Amitriptyline last week, one 10mg at night for the first 3 days and then 20mg. Next day another call from my GP, my blood results were back and I am very low on Vitamin D and need to start on some other ( Vitamin D/Calcium ) tablets straight away. One twice a day, and I can’t take them 2 hours either side of any food intake! What a nightmare! :roll:
Anyway,maybe it was just coincidence, but on the fourth night of Amitriptyline I did actually sleep better and for longer. Still woke up but only once and got straight back off to sleep instead of being awake for hours.Then what happens?! A nasty red and itchy rash all around my waist,midriff and lower back!! Aaaargh!!! :x
Thought it might disappear again but 3 days later it’s still there and spreading, so phoned GP this morning and he told me to stop taking the Amiriptyline straight away and I have to see him on Thursday. Oh - and in the midst of all this I at long last had my first (fairly stressful) meeting with managers,HR and works’ Occ Health rep. and that didn’t go great either… but that’s for another post.
Does anyone else have experience of low Vitamin D or had a rash with the Amitriptyline?

skezier

Hi Puschinka,

Sorry that you have had both the fibro and the reaction thing so close together but hopefully the gp will be able to sort out some different drugs for you.

It does seem that a lot of us do get the fibro as well, they kinda stated to tel me I had it but I asked them not to finish the sentence (I have enough conditions already and just wont have another)

I was already on the pregabalin and they or the gabapeptin can help fibro a lot so he said he wouldn't be adding anything in 'if' I did have it as I was already on the right drug so it might be your gp opts for one of those for you.

There are also a lot of different tablets that do the same kind of job as the ampy's so hang in there and don;t for get we do do half decent pocket duties if you need. A ((( ))) and hope you get a decent night tonight. Cris xx

valval

hi vit d is one of those we need sun for so at moment many of us are low on it i use lamp to help with mine and get out in sun and fresh air when can. sorry that you have this to cope with but it will be worth it when they get it under control ((())) hope sorted soon val

traluvie

Hi..

Its good to hear you have a diagnosis, although it can take time to find te right kind of meds to help.

I have a vitamin d and b defficiency, i take calcichew tabs and have vitamin b12 injections.. Can't say i have noticed any difference, but then we are all different..
Amitriptyline works wonders for me and i hope that they can find something to help you that doesnt cause any nasty side effects, wish you well

Puschinka

Thanks Cris yes I'm sure my GP will prescribe me something else tomorrow. This is one of the reasons why I hate taking meds :?
With me, there nearly always are some side effects. My silly body doesn't even take too kindly to Paracethamols! I can't imagine how it must be for some of you who have to take a right 'cocktail' of different meds.
Incidentally, I managed 5 hours last night ( with a couple of wakeful periods in between), but that's quite good for me.
Thanks Val - I used to be a real sunworshipper and I half suspect that my current Vit D is due to the fact that since all this began 5 months ago, I have turned into a bit of a hermit and simply haven't been going out much, thus spending less time in what bit of sun we have had. I know Vit D isn't so much diet-related but our bodies get it from the sun. Let's hope we se a bit more of it soon. The whole country must be Vitamin D defficient, LoL.
Hi traluvie and thanks, I had hoped the Amitrityline would agre with me, I've read mostly positive things about it here, but - hey ho... I'll just have to try something else.
I am glad I signed up for a years' pre payment certificate the other day. At this rate, it'll be a good investment and I'll be quids in soon!
Best wishes to you all. xxx

olivergillie

Hallo - a lot of people with fibromyalgia and chronic fatigue find that vitamin D helps with pain and energy loss but there don't seem to be any formal clinical trials. If your vitamin D is low - and almost everybody in the UK has low D unless they have an outside job or have a lot of foreign holidays - then it is generally good for health to take D. However Calcichew does not provide enough for most people even if you take two tablets of 400 IUs. You can't take more or you would be taking too much calcium. You need to talk to your doctor about getting a higher dose. You could also ask for a vitamin D test. According to Haroon and Regan (Int Journal Rheumatic Diseases 2010) vitamin D is recommended for all rheumatic conditions as well as for general health . They suggest a blood level of at least 75 nmols/l (nanomoles per litre). I can send you the article and information about a good value microtablet if I am allowed to do this by the moderator - my email address is
cheers Oliver Gillie { e-mail address deleted}

Numptydumpty

Hi Puschinka,
it's always the same isn't it? You find something that helps a little, then the side effects start!
It's good you have a diagnosis though.
All the best,
Numpty

skezier

Hi Puschinka,

I am just dropping in to see how your getting on? I really hope the new drugs have done the job without side effects.

hey the recent bit of sun might have helped as well... not sure wherever it is gone mind.

Leaving you a ((((( ))))) and so many hopes your feeling a lot better than you did and sleeping better as well. the interrupted sleep is evil! Hang in there and I just wondering ho your getting on. Cris xx

Greenlily

Hi Pushinka , my brother is given vit D drops [ he's on chemo] but i rely on cod liver oil during the winter. We were bought up on it during the war and can take it neet from the bottle.... . I'm completely solar powered so get out and potter outside as much as I can. Do you have a sunny side of the house you can sit in or potter a little?
I do hope you're sleeping better. I have to admit to sleeping tablets which I started when caring for my parents coz a bad night floored me and as a driver etc. I was frightened of dropping off and feeling rough during the day. There's a lot of bad publicity around sleeping tabs but i take half most nights and if in a lot of pain i take a whole one. They're life savers IMO