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what has helped you? or what has not helped

irenegee profile image
16 Replies

I have had fibromyalgia since 2002 and have tried lots of therapies, pain management, CBT, hypnotherapy etc and have found things that help and lots that don't and I am wondering what has helped/not helped you.

I am pretty much open to any new suggestion.

thanks Irene

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irenegee profile image
irenegee
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16 Replies

Hello

What helps besides medication which I don't think ever takes the pain

Away completely

Hot shower or bath helps a lot if you are stiff and for the pain

Hot pads helps, hot water bottles,

And if the pain is bad a tens machine does help a bit, I don't know

About other things as this is the only things I have tried, oh a walk

Some times not to far if it's in your legs.

irenegee profile image
irenegee in reply to

thanks for your reply i do all of the above and more, i was hoping that we could all share what helps or doesn't to see if anything else helps that I haven't tried or other people haven't tried. I'm like you in the sense that i don't think pain killers help the side effects are worse than the benefits (in my opinion) I have tried other things that helped me if you want any suggestions

Abbeystead profile image
Abbeystead in reply to

What about if your pain is hot and burning? You wouldnt advise hot water bottles then would you. My pains are like that.Have been in bed all day (gorgeous outside as well). Legs knees and thighs are on fire and the pain is awful when I walk. I try icepacks, but nothing seems to work. At least in bed you can stretch out - better than sitting downstairs in a chair. Cant use hot baths as I have Lypheodema and that only makes your legs swell more. Anyone got a gun!!!!!!!!!!!!!

in reply toAbbeystead

I would NOT recommend that people do anything the question

Is what do people do, my answer was a general one about me

Not a recommendation

Hello yes I would be grateful to try any thing, I don't eat bread or anything

That has flour in or any sweatners, also,try not to eat to much chocolate

As that also,has an effect, not so good at leaving out the chocolate as. It's

A comfort I think, but I do feel better for not eating so much gluten although

I only do it sort of if you,know what I mean.

Love viv

irenegee profile image
irenegee in reply to

thanks

irenegee profile image
irenegee in reply to

hi i have found gentle yoga to be great, gentle stretching of the muscles helps get some of the tension out. it gets easier the more you do,

also i have found going for sauna/steam room and swim is good the heat helps relax and the swim is some exercise and going from hot to cold seems to help too. when i have a massage or sauna i seem to sleep better also

I have also found meditation helps and i taught myself by reading about it and trying it all you need is some soothing relaxing muscle and I lie on bed or yoga mat close my eyes and just listen to the muscle the mind seem to do the rest. It seems to calm the mind and the body. but it takes a few times before the mind learns to switch off.

I have also started doing things that make me happy, laugh smile I know it sounds daft but i have found that when my mood is low fibro symptoms seem to be worse.

I also started saying yes to social invites (i am selective though and not too often) but it gives you something to look forward to, and i always have a pj day the day after cause i know i will need the rest but i found it to be worth the extra pain ( i could be in pain the next day anyway and not have gone out and had fun)

i'm sure there are more things i can't remember at mo (brain fog setting in sorry)

but hope something here helps you x

SootyB profile image
SootyB in reply toirenegee

I've got a pain-relief 'hypnosis' CD - it's more visualisation than true hypnosis, but it does work. I think it's only about 5-10 minutes long (look up Dr. Charles Vald for more info), but it seems to help me. It is a little like being soothed by Dynamo, though, as - although the accent is different - he has a similar tone!

Sara xx

Spirit profile image
Spirit

Hi Irene

I've found sports massage to be a big help - straightens me out from the hunching up i do against the pain. First time i thought she was going to kill me haha, but in fact she was brilliant at understanding how pain receptors work. I'd give that a go. Can't afford to go myself as often as I would like, but it's worth it every time I go and improvements are noticable for a good couple weeks.

In contrast I have found that ordinary beat-you-up type Physio massage in hosp didn't hlep at all.

Hope this helps

Gentle hugs

Spirit x x x

irenegee profile image
irenegee in reply toSpirit

thanks I have found a really good masseuse which i get once a week (would like more but like you said its the cost) but it took me some time to find a good one and I have found it to help in the short time but help all the same.

tribalwelshgirl profile image
tribalwelshgirl

Hi Irene,

I've found that it depends what sort of pains you have going on. When my sciatica flares, hydrotherapy helps otherwise just swimming. I do Pilates and make use of my wii fit.

I use a wheat bag at nights on my lower back or most commonly under my left thigh which really helps.

I have a tens machine that is fantastic for my back and shoulders and I also take something called mussel flex from holland and Barrett. It's green lip muscle extract and works on rheumatic pains, far far better than glucosamine I found.

I've just started seeing an occupational therapist too which has been fab. She gave me the mobile phone battery example - if you have fibro your battery runs down much quicker than someone without. We start with less too, and every time we lose energy, it is harder to charge back up. We end the day on no battery and feeling exausted however we can't get enough rem sleep because our energy is so low so we start on less charge in the morning and it is a cycle which ends in a blowout where we can't get up and our body forces us to charge our battery properly. She told me to take relaxation breaks where you sit or lie and do nothing, no reading or tv, music with words etc. even watching tv takes a lot of energy when you have fibro so it's important to take proper rests. That helps too.

Sorry for such a long answer but hope it helps.

Gentle hugs, rhi.x

soma1 profile image
soma1 in reply totribalwelshgirl

excellent reading, thanks tc soma x

irenegee profile image
irenegee in reply totribalwelshgirl

Hi thanks for your reply. I do all that you have mentioned (maybe not as often as i would like) the only thing I haven't tried is the cream but I will give it a go. I do meditation too and find that to calm the body and mind. thanks again

I had Pacing Therapy at a CFS Clinic which literally changed my life. I was spending too much time in bed and through learning how to pace myself and introducing regular rest periods between activities, I increased my well being, my Fibro was better controlled and my sleep pattern reorganised.

I also used hot water bottles, ice packs, infra red massagers, a memory foam pillow, and dimmer lighting.

I eat a totally natural diet, no additives at all, no artificial sweeteners, flavours or preservatives etc. I make all the family's meals from scratch, no bought or processed sauces, meats etc. Organic fruit and vegetables etc. I avoid bread and floury products as this makes me feel bloated and unwell. I include pulses, nuts and seeds in my diet. I only drink pure fruit juice, water, tea and soya milk.

irenegee profile image
irenegee in reply to

Hi thanks i found your reply very interesting I'm a vegetarian so I find I have a better diet than most but recently I have been researching foods that will help, I make most of my meals from scratch I drink water and fruit juice and eat lots of nuts and seeds etc but they are days when I need the easy option but your reply has prompted me to research further as i am a great believer that pills are not the best choice a lot of time. and the majority of the time i pace myself and i even book in pj days and do nothing.

thanks

irenegee profile image
irenegee

thanks will do

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