Carers with Fybromyalgia...

Replies

By mag

Re: Carers with Fybromyalgia...
Thu 6 Sep 2007 11:33

Dear Rapunzel

I do not have experience of fibromyalgia but I do know what it is like to be ill and still to be a 24/7 Carer. I look after my hubby and was quite ill last year.

I found this site to be a great help and encouragement. I would also recommend the chat room - there are usually others there from 7.30 pm onwards. There may be someone with the same illness as you have, but in any event, you would enjoy the chat - they are all very friendly and you would be made to feel so welcome.

Kind regards - Mag

By LizzieB

Re: Carers with Fybromyalgia...
Thu 27 Sep 2007 11:23

Hi Rapunzel - runs in my family and am getting some signs myself. Lyrica (prescribed off label) has worked but you can end up putting on a large amount of weight. Have you been to www.immunesupport.com - American site but lots of good information. All the very best....

By websi7

Re: Carers with Fybromyalgia...
Fri 5 Oct 2007 05:29

Hi

I care for my wife Mary and am happy to chat about the problems - Mary and I are just setting up a web site which you may find useful (there is still a lot of work) and we do want to get it known also

www.fibromyalgia-support.net

www.fibromyalgia-support.net is a new discussion board we are launching - feel free to post a topic to kick it off.

Maurice

By Pysie

Re: Carers with Fybromyalgia...
Sun 7 Oct 2007 15:03

Hi, Rapunzel,

Just caught up with your message.

I care for my 85-year old Mum who has osteoporosis and recently had a mini-stroke, and I suffer from fibromyalgia as well as ME and IBS.

Some days are worse than others. There are mornings I find it difficult to get out of bed, afternoons when I just doze off whenever I sit down, and days when the pain is so bad I can't walk.

The only medication I found to help is ibuprofen, but I can't take this regularly as I had a peptic ulcer in the past. My GP has been no help at all. Her only suggestion was that I joined a gym (as if I had the time or the money!!!) and went to meetings at MIND. She seems to think it is a psychological problem brought on by stress. I am seriously thinking about asking for a referral to the pain clinic at the hospital.

However, I bought a TENS machine for Mum and discovered this works wonders on my fibromyalgia. I also have a 'shiatsu' massage cushion which I use twice a day on my back. And I adopted a retired greyhound which I walk for an hour each day. I don't know if you find the same thing, but I can start off on a walk with sharp pains in - say - my feet, bearly being able to put one foot in front of the other and, ten minutes later, the pain will disappear completely.

All in all, I am coping at the moment, although I have discovered I can't pick Mum up off the floor when she falls!

Love
Pysie

By fit-to-drop

Re: Carers with Fybromyalgia...
Thu 10 Jan 2008 00:40

hi rapunzel yes im a carer too with fibromyalgia , is so for us to get through each day , but we have to because our dependents need us too .please get in touch id love to chat ,

By lr

Re: Carers with Fybromyalgia...
Fri 11 Jan 2008 09:30

My mum has fybronmyalgia and she is the one who is being cared for so I admire your strength for caring for someone else. My mum can barely walk most days and is in pain nearly all the time. She cant sleep cos of it which I think makes it worse because it means she is tired too.

Please could you tell me what a tens machine is and how it helps. Also, with my mum being in pain she hasnt really attempted to walk for more than ten mins. Is it true that the pain goes away after a while of walking?

By Pysie

Re: Carers with Fybromyalgia...
Sun 13 Jan 2008 23:24

Hi Ir,

I have a tens machine that I bought for Mum (who has osteoporosis) but I use it more than her and it really helps my fibromyalgia. It's simply a battery-run machine - about the size of a mobile phone - with four gluey pads that you stick over the site of the pain. It works by giving a small electrical charge which is supposed to stimulate the body into producing chemicals which block/ease the pain. It feels like a warm massage and, if I use it over tense muscles, I can feel the muscles contract and relax. Lovely!

I would suggest you speak to your Mum's GP before buying one, though. Although it's unlikely, they could be dangerous for some people to use. Also, some surgeries have tens machines which you can borrow as a trial run.

I also have a shiatzu massage cushion that I use on my back almost every day.

Also, I walk the dog for at least an hour each day. When I start out I often find that I can barely walk because of pain in my feet, legs and hips, but the pain goes after about ten minutes or so. I may get odd 'shooting pains' while I'm out walking, but they never lasts more than a few minutes. In fact, it's usually the only time when I'm pain free!

By lizzie_T

Re: Carers with Fybromyalgia...
Wed 9 Apr 2008 19:43

I use a TENS machine. It was prescribed in the days when they had to be - 1988 by a surgeon who explained that the brain can only receive one message at a time and if you can overcome the pain by something you can control yourself then the real pain is put to the back of the mind so to speak. However, in those days you were lent one by the hospital. They were larger and more clumsy. You were given black rubber pads and a tube of electrode gel. However, if you did not have it in the right spot or it was more painful or sharp you had to take them off, clean them, apply more gel and find another place. I found this frustrating and so did a lot of others. In fact a friend cured this problem and the hospital was surprised that I got on with it, My friend introduced me to stick on ready gelled pads which you could move about without haviing to apply gel and they worked a treat. Actually I got more pain relief if I put it on the other side of the body to where the pain was, for some reason - perhaps it took my mind off. They are also used in childbirth, but cannot imagine that would help much!!
There is not a lot known about the condition. At one time a consultant thought I had it when another chap thought something else. I am resigned to what I have, knowing that there is no cure. TENS machines do help cut down on painkillers and in 20 years I have been able to manage without overstepping the mark, but I too have gastric bleeding - it comes with the territory for chronic polyneuropathy so I cannot have ibuprofen either. I have Tramadol and dihydrocodeine (have I spelt it right?) and they help. My old GP years ago told me that the body can become accustomed to one drug and a change is helpful. Someone told me about something some years ago and he said 'well I will prescribe it but it will not help you, it is not very strong'' - he was right, yet it was a prescription drug. You have to try other things to get it right. We should all get together for a mammoth hug!!!