Fibromyalgia discussion ....

[Fizz]

Hi, Juliecragg,

Can't help much with fibro but regarding numb hands in the morning there are threads on carpal tunnel and trapped ulnar nerve which can cause numbness in the fingers: which fingers depend on which nerves are affected but I seem to remember that some people have problems with more than one nerve affected and so have more widespread numbness. If you do a search the existing threads would give you more info.

[nemonie]

The 'cloud' comment might have been a reference to 'brain fog' as we tend to call it.

[juliecragg]

thanks Fizz and nemonie, my GP said about carpal tunnel but commented that it was unlikely be another condition and to mention it to the rumi nurse. I did and she didn't refer to it again. and as is common with us (i've gathered from reading posts) I didn't push it thinking that i was making a mountain out of a mole hill. Conditioning from years of being told i was "making something out of nothing", my last rumatologist back in october 2010 said that about HMS.

Nemonie i know i probably sound stupid but whot is brain fog? I'vealways been a bit scatty and come out with not what i was ment to say. Is it that?

[nemonie]

Brain fog is a descriptive term that relates to some of the cognitive effects of fibro (and a lot of other chronic fatigue and pain syndromes). Usually you have a poor memory and may have inhibited thinking, feel generally scatty and fatigued and like your brain has fog so you can't think clearly.

You'll often hear people on here say they are having a foggy day - which might indicate that they are having a bad day metally, maybe they've managed to put the kettle in the fridge and the cat on the stove and they can't remember what day it is or if it's time for bed yet.

[LynneH]

Thanks for suggestions, Will try a tens machine and trying to go swimming a bit more often. Having a much better week so far

[juliecragg]

I've been told that swimming is not a good idea if you have HMS as you are streching your joints. I was told to just walk through the water The only thing is i'm worried people will think i'm mad
Julie

[AnnaH]

I've been told that swimming is not a good idea if you have HMS as you are streching your joints. I was told to just walk through the water The only thing is i'm worried people will think i'm mad
Julie

Lots of people walk through water - I'm involved in Arthritis Care and this is the advice given to all sorts of arthritis patients (including fibro sufferers).

[Rosie]

Hi all

Julie, the advice you have been given about not swimming is probasbly a bit over-simplified. Swimming is brilliant exercise for someone with HMS as you are exercising in a medium (water) that provides support as well as resistance, and is no impact. However, like anything with HMS, you need to be aware of what is happening to your body while you are exercising. For some peeps this may mean no breast-stroke kick as this places more stress on the knees, or no butterfly because shouldersare over flexing, and so on. But you don't have to swim a standard stroke anyway, so if breast-stroke arms and dolphin kick suits your body, go for it, or if you can only use your legs, do it that way, and not to do too much of any one thing e.g. all kick work may be too much for your ankles/hips/knees. Running in water is another possibility, as is walking and any other kind of exercise that you can transfer into the water, like cycling your legs or arm exercises using floats for resistance. There is a thread about swimming here.
As fatigue is such an issue with FMS, it is really important to start swimming or exercising at a low enough level that your body can cope with, and to increase very slowly. It is really easy to get carried away and do too much when you are in the water as your body is supported, only to have it hit you later on.

Rosie

[Athran]

I've been told that swimming is not a good idea if you have HMS as you are streching your joints. I was told to just walk through the water The only thing is i'm worried people will think i'm mad
Julie

Everyone with HMS or EDS is different. What helps one person may have to be given up by another. Swimming is one of the best things I can do and feel great after. I would suggest you try anything at least once and see what works for you. Trial and error.

In my view FM and CFS/ME is just part of the parcel of EDS and we each have to find our own activities which help. My 'exercise' I actually call my therapy. Horse riding = hip therapy. Swimming = shoulder therapy. Belly dance = put it all together, co-ordination and control therapy.

[Bo1970]

Something intriguing has been pointed out by my physio regarding my sore mucles/fibromyalgia.
I told him which muscle felt tight and he did a check on it.
But he found it wasn't tight at all even though it gave me that burning soreness when stretched e.g. like I've been running and muscle is really sore.
I know it's just an observation but trying to figure out how I can get rid of this tightness.... or feeling since knowing what the problem is, I might find out what I can do about it without using heavy medication. And let's not say it's all in the head cos I am not imagining. I'd rather imagine soreness free to be honest.

[juliecragg]

dose anyone know anything about wat they do at pain clinics? my gp has taken me off meds for my hms and has refered me im still on amatryptaline for fibro he sayd that they help you deal with the pain (how?0 he said thats better than keep tring diferet meds. only ben off them acouple of days and every movemnt hurts feel kile cryng!
any ideas vry welcme

[Stone]

Depends on you really - it's quite individual. For me it was mostly about learning to pace correctly, what activities set me off, avoiding activity cycling (having a good day so doing a load of stuff, then overworking yourself and having a bad day the next day etc). There's also quite a lot you can achieve with attitude changes and learning to cope better - to be honest I thought it all sounded a load of touchy-feely rubbish but it was actually quite good Definitely worth giving it a go, anyway.

Stone

[juliecragg]

I've finally recieved appointment for pain clinic. I've got to wait til the end of October thats 3 whole month more of feeling like i've got a bad case of flu. My hubbie said to the dr that he gets a small window with me a day and thats it and its true i feel totally out of control of my life.

[niccysearle]

I'm off to my GP on Monday to have a proper talk about how i am doing as I am becoming increasingly convinced that as well as HMS I also have Fibromyalgia.
My mum has Fibro, and over the last year or so I have noticed that I am struggling with many of the same issues as her, including all my joints constantly hurting, constant back/neck/headaches, painful fingers and thumbs, dizzy spells and feeling frozen or boiling but not much in the middle, unable to sleep at night then exhausted in the day, brain fog, and increasing periods of feeling completely depressed and not wanting to answer the phone/door etc.
I am really hoping that my GP will listen to me and investigate what is going on with me, as life is becoming a real struggle for me!!

[gila]

hi bo
the tightness might be in the myofascial tissue - v common for fibromites and HMSers to have that- there is myofascial release massage therapy which can help- maybe check out one of the fibro support websites, they tend to explain this.

niccy- big hug! but... all those things you mentioned are also typical for HMS... and it might well be that your mum is "misdiagnosed"/undiagnosed HMS ...
I sure have had all those probs but I do not have the fibro dx necessary (though there's some talk about abolishing them) tender points.
the "dizzy spells and feeling frozen or boiling but not much in the middle, unable to sleep at night then exhausted in the day, brain fog" actually sound like autonomic dysfunction issues to me.

big hugs for all!
xxg