Fibromyalgia - tips/support/advice

StumpyPumpy

itsanne wrote: »

My mother was prescribed steroids for this. Most people take them for 1-2 years and are then fine, but she found the symptoms came back every time she tried to come off so remained on them for considerably longer -but she is in her 80s and I don't know whether that has a bearing on it. Having seen her, I would suggest that you pace yourself when trying to keep fit. It's not something you can "work through".

I believe there is a Fibromyalgia self-help group - I know she talked of newsletters etc.

It's a frustrating condition, but it will be self-limiting and you will get better.

Edited to say that last bit sounds awfully abrupt. It's not intended to be!

I suspect that you are confusing Fibromyalgia with Polymyalgia Rheumatica (PMR) which is commonly done (and people can suffer both simultaneously), as it has similar symptoms to Fibro (and Rheumatoid arthritis amongst others).

As far as I am aware, Fibro is not treated with steroids, in fact, Fibro sufferers tend to be very intolerant of steroids in general, while it is a common treatment for PMR. Also Fibro is often a life-time condition, not self-limiting and not always something "you can work through" all the time, whereas PMR tends to be a shorter lasting and more easily treatable complaint.

SP

itsanne

StumpyPumpy wrote: »

I suspect that you are confusing Fibromyalgia with Polymyalgia Rheumatica (PMR) which is commonly done (and people can suffer both simultaneously), as it has similar symptoms to Fibro (and Rheumatoid arthritis amongst others).

As far as I am aware, Fibro is not treated with steroids, in fact, Fibro sufferers tend to be very intolerant of steroids in general, while it is a common treatment for PMR. Also Fibro is often a life-time condition, not self-limiting and not always something "you can work through" all the time, whereas PMR tends to be a shorter lasting and more easily treatable complaint.

SP

Aargh! You're right! Will delete. Thanks.

catkins

I was diagnosed last year after a couple of years going to the doctor complaining of lots of different things. I find one of my worst problems is the migraines. They can last 2 complete days sometimes and I literally cannot get out of bed (I have to crawl to the toilet or I almost pass out). The pain in my head sometimes makes me cry and often I am vomiting every 10 minutes and have to have an injection to stop me throwing up. Also because I cannot even keep a sip of water down I end up dehydrated which makes my head worse.

I gave up work last year because of having so much time off sick with my migraines. Even when I don't have a bad migraine, most days I have a bad headache and it really gets me down.

Problems with my legs, feet, hands etc comes and goes but as someone who used to walk miles (don't drive) I find the problems I can have walking (pain or just fatigue) very frustrating.

I started taking new medication in about May this year and I was doing so well I thought they were working. Now the weather has changed though I think I was doing well because of the good weather. The last few days I have had problems with my legs, feet, hands, shoulders etc.

I know I don't have it as bad as some people and I am lucky that my husband is understanding and helps as much as he can even though he has a full time job and is out of the house long hours.

I just try and pace myself every day but I always walk my dog, even if some days it's at a very slow pace and not very far!

Does anyone else find their sense of taste has changed? Foods I used to like I now don't. Some foods definitely taste different to me now and, having always had a big appetite, I am now finding that I just cannot face food some days

scooby088

My OH was diagnosed with fibro and lupus both very nasty non curable conditions when she has a bad flare up nothing can control the pain not even morphine. All the GP can do is treat the symptoms and this is a lifetime condition she understands this but can also take it's toll mentally too. My OH has has physio for the fibro but it can only do so much and hasn't really help, when she gets pain it affects her knees really badly. I try to help but she has always been active and tries to do everything like she used to.

shykins

another fibro sufferer here. noone has mentioned the Uk fibro forums so i thought i would post a link. lots of useful info and support there

http://www.ukfibromyalgia.com/forums/index.php

KxMx

It would also be worth looking at everything you do day to day and see what can be made easier, or is there anything you can compromise on such as a few household chores being done once or twice less. Would a cleaner be worth paying for etc.

Some of the things which make my life easier may sound silly- a safety box cutter for easy opening of boxes and shrink wrap, and a bath mitt (face cloth glove) really do add up and make a difference.

You will have to make adjustments and it will seem really unfair, but it's better to be relaxed about it rather than stressed out.

My Mum (who works long hours and not to be rude about it is getting on in age) finds switching her mobile off between 6 and 9 pm, and no internet in the morning before work, helps her relax. I realise this may not be possible for your work set-up though.

[Deleted User]

Brighton_belle wrote: »

I'm very sorry to hear this news Bailey - you really have had a lot thrown at you in the last year or two. I hope at least having a diagnosis, for what was already happening does actually help in same way.
I too have a condition that create buckets of fatigue (and hving a name for it did really help me not feel I wa just a lazy wimp), though over 25 years, I have got some sort of life back.

My tips would be to learn to prioritise and say no. Simplify your routines at home at much as possible - I personally have found major de-cluttering and everything I do own having a place help me keep order and makes house work easier.

If your ex husband is willing to help, try and think of practical things he can do for you and the children, even just once a week that might make a difference. And think about what chores your children can do - don't feel guilty about that, it's part of being a team.

Thanks for posting, i'm sorry to hear you suffer similarly.

Thankfully I am already a neat freak!! I like my home to be clutter free and organised, similarly to my life!! The children are expected to help out where its appropriate and suitable for them. I often tell them "its team work in this house". I also view it as teaching them independance and how to do chores for themselves. Plus Mummy isn't a slave and we don't have fairies either!!! :rotfl:

[Deleted User]

Hi everyone, so many replies, will try to answer.

The consultant has been trying to contact me today, but unfortunately we have been playing phone tag, so will try again tomorrow. The pain management referral will go through him, no point seeing the gp before then.

My business is a cleaning/ironing service and I also do personal assistant work for people with disabilities. I like to keep my fingers in a few pies in case something happened to either business. So employing a cleaner would be pointless when I work to clean others houses. But I appreciate the thought.

I need to keep my mobile and computer on during the day for obvious reasons there.

I haven't thought about juicing or medications yet, its too recent a diagnosis. But its things to think about.

Today I felt so stiff when I woke up from my very disturbed non deep sleep. I had to walk the kids to school and the into town, but on the way home I ached all over in my muscles and just wanted to sit down. I did with a cuppa and then after a while had to move about as it hurt to sit about. Can't win eh?

I'm probably going to have to finish typing for now as my positioning is making my back and shoulders ache and i'm trying to get to bed at a reasonable time, even if its reading my book for half hour too.