Fibromyalgia

TOBRUK

Unity wrote: »

I can't remember, but is it you who takes Baclofen? I have the 10mg tablets and my doc has said that I can take up to five of these to relax the muscles when I get those bloody awful sensations:eek:. Diazepam is also a good muscle relaxant - but I am very wary of it myself as it's addictive and I find a very de-motivating drug.

Hi Unity, I take Baclofen - 30g 3 times a day every day. I was given these initially because I had involuntary spasms which soon eased after taking Baclofen.

Magenta

I am afraid that my GP is really hopeless, when I was going thru chemotherapy the first time I neede antibiotics for a sore throat, he prescribed a bottle of paracetemol saying 'I am sure that you really haven't got cancer' (hadn't even bothered to read my notes) Then when I started with M.E and Fibro he wanted to send me to a psychiatrist(all in my head of course!)
Bigzippy, I too have had to abandon a bra for the same reasons!
Unity, I have TMJ too, it's murder when I go to the dentist!!! Mydentist has now realises my problem and thats a help.

What people don't seem to realise (even the medical profession) is that M.E and Fibro have lots of offshoot problems. But it's nice to know now that I am not bonkers and other people have the same things.

Magenta

Unity, I also have the same foot problem as you. I have had three operations on my right foot in the past two years and have had to have bone grafts etc to try and sort the problem out, a foot reconstruction.
I have just come back from the hospital to day and they are now referring me to the pain clinic as the operations have not really helped.
Hope yours feels better soon. xx

somebody_else

Magenta wrote: »

I am afraid that my GP is really hopeless, when I was going thru chemotherapy the first time I neede antibiotics for a sore throat, he prescribed a bottle of paracetemol saying 'I am sure that you really haven't got cancer'

Magenta, that's appalling! Sadly, it doesn't come as a surprise to me, 'cos I've come across that attitude from doctors before.

When I had the brain haemorrhage, the first doctor to see me told me I was making a fuss over a migraine (I admit, I was making a fuss, but under the circs, and in hindsight, I think it was a reasonable amount of fuss) and the second doc to see me, told me I was vomiting for the sake of it.

I still suspect that they airlifted me to a different hospital because they'd spent so long @rsing about and ignoring the real problem that they were convinced I was going to die and didn't want it happening on their site.

bigzippy

raeh wrote: »

bigzippy im so sorry you had such a bad night, i have nights where i feel like theres things crawling under my skin and pulling at all the nerves so i cant lay still but yet it hurts to move too! the nights seem so long then too dont they? i hope you managed to get some sleep xxx

do you think it was due to you being worried too??

I managed to get to sleep about 5.30am in the end. Woke up around 10am then went back to bed and woke up when someone rang me at 4.30pm. Hope it doesn't mean I'll be lying awake all night tonight too....

I know that stress does affect my symptoms, but I don't think that's why this has kicked off... I've been more symptomatic for the last week or so anyways. I read on another forum that the effectiveness of Amitriptyline decreases the longer you're on it - and the people on there were only taking it when they were particularly symptomatic... so maybe that's worth considering..? I worked out a budget based on no housing/council tax bens and came to the conclusion that to make ends meet OH will have to earn at least 1k more (after tax) than he currently does. At least we know where we are now Might give him more incentive to give up smoking and wasting money, eh? :rolleyes:

Can't wait til I see GP on monday now. Really need to review the drugs I'm on...

deptfreemoneytart

Hi All
There's been so much to read I haven't had the time or the energy to write, I had something happen yesterday that I've put down to FM as it has happened a couple of times before. From my knees to my ankles it felt like, you know when you've got a sink full of bubbles after washing up (not that I do that anymore, that's what a dishwasher is for) and if you watch them the bubbles pop continuously, well that's what it felt like inside my legs. For the last 2 days my legs haven't felt like they wanted to support me, no pain involved but a very weird feeling.

Before being diagnosed with FM, June 08 I'd been off work 2 years and the previous year had taken 150 working days off. In that time I was constantly at the surgery.
They kept giving me blood tests which always came back neg. The year before that I had my Gall bladder removed due to extreme pains in my chest area. They never found any stones, just full of bile.
2 years later approx. (not very good at remembering dates) I had pains in my back and chest and was sent for all the cardiac tests (has anyone done the treadmill test while having FM, I thought I was going to die), they all came back neg. So I paid for a full body scan which discovered I had calcium blockages in a couple of heart valves.
They made me do the tests again, all neg. So I insisted on having an angiogram, camera up the main artery into the heart valves.
Nothing to worry about go home you'll be fine.
Then long after I had extreme pain in my lower stomach area and I couldn't move so the GP had to visit. He said constipation, drink this and it will go.
24 hrs. later another GP from the same surgery said get to the hospital fast you've got a hernia.
Stayed in hospital for 4 days while they made their minds up. Then was given a local plus a trainee Surgeon and a trainee anesthetist and they made a complete mess of the operation and I nearly lost it on the table,the main man came in and gave them a bollocking while I'm laying there listening I took ages to heal and I still don't think he put a patch in.

So to the point (if your still awake), I had 3 operations, lost 4 jobs and am now permanently out of work because nobody diagnosed FM ,because they don't read previous notes on the computer when you go to see them, and to round it all off I've found out I can't even sue them for negligence. What a good well paid little number that is.

I've finnished moaning now, so I'm going back to watch the tele.
I was supposed to go to the Adelfi Theatre to see Joseph and his coat, but the wife has had to go with her sister, still another Christmas present solved!
I'm still not sad, just letting go.
Thanks for being there and for listening.
Have the best 24 you can.

bigzippy

Unity wrote: »

Hi petal, I wish I could help, but my speciality begins and ends with DLA I'm afraid. I'm at a complete loss on this one - but at least you know it is not just you . Thanks to this site we manage - although it was difficult at first when DH had to become my carer and many thousands of pounds income disappeared in a puff of smoke :eek:. We soon learnt that there are more important things in life however .

Cheers for the thought anyway dude(tte) It may well end up being a complete ballache but I'm still very much looking forward to being married to my lovely man :happyhear

Unity wrote: »

I can't remember, but is it you who takes Baclofen? I have the 10mg tablets and my doc has said that I can take up to five of these to relax the muscles when I get those bloody awful sensations:eek:. Diazepam is also a good muscle relaxant - but I am very wary of it myself as it's addictive and I find a very de-motivating drug.

If you are like me, you can cope with the pain - after a fashion :rolleyes:, but the nerve symptoms - from twitching to spasming and every itchy, burning, prickling, tingling sensation in between drives you to distraction _pale_.

I hope you feel better now it is light :hello:.

No I don't take baclofen - although you guys mentioning it does help me at least have a clue what to ask the GP for.

I can take the pain, and I can take not being able to walk, being knackered or dizzy, or even the mental ability effects etc etc etc - but as you say, the nerve symptoms are just a step beyond. They just make me want to attempt self operative methods to cut em out or something! You can try scratching, biting, hot, cold and nothing seems to bloody work :wall:

bigzippy

deptfreemoneytart wrote: »

Hi All
There's been so much to read I haven't had the time or the energy to write, I had something happen yesterday that I've put down to FM as it has happened a couple of times before. From my knees to my ankles it felt like, you know when you've got a sink full of bubbles after washing up (not that I do that anymore, that's what a dishwasher is for) and if you watch them the bubbles pop continuously, well that's what it felt like inside my legs. For the last 2 days my legs haven't felt like they wanted to support me, no pain involved but a very weird feeling.

I know that feeling John. It's grim isn't it. I can't work out whether it's better to be some kind of medication that numbs all your nerve endings so you don't feel any of it, but also don't feel good things... or not...? I suppose I should be grateful that I don't have to make such decisions. :rolleyes:

deptfreemoneytart wrote: »

So to the point (if your still awake), I had 3 operations, lost 4 jobs and am now permanently out of work because nobody diagnosed FM ,because they don't read previous notes on the computer when you go to see them, and to round it all off I've found out I can't even sue them for negligence. What a good well paid little number that is.

Tell me about it. Nothing as horrendous as your tale of woe, but I had a colonoscopy last year where they damaged my coccyx (tail bone). Pain isn't even the word. It really doesn't help the pelvic pain symptom either. But my GP said it was practically impossible to prove as they don't even rely on xrays to see if your coccyx is broken and there's no before and after shots. Wonderful(!) :rolleyes:

bigzippy

Magenta wrote: »

Bigzippy, I too have had to abandon a bra for the same reasons!

What people don't seem to realise (even the medical profession) is that M.E and Fibro have lots of offshoot problems. But it's nice to know now that I am not bonkers and other people have the same things.

Glad to know it's not just me!

My sentiments exactly

aliandy

Hi everyone, still in shock at all the same symptoms I have cropping up on here, abandoning the bra, yes I've had to do that, can't bare it anymore.
On the plus side I have found a wonderful consultant, he will be trying to sort out my coccyx on 24th dec, yes christmas eve but luckily I won't have to cook 25th, injection and manipulation, if this doesn't work he will then remove it, thank god.
Seeing how a lot of our diagnisis are the same does anyone else have PCOS also?
Ali