Struggling: Cant even stand for 5 mins... - Fibromyalgia Acti...

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Struggling

Djemima profile image
10 Replies

Cant even stand for 5 mins without crying the pain alo g to bottom of my back and down mmy legs is unreal taking every painkiller u can think of but nothing helps

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Djemima profile image
Djemima
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10 Replies
Oshgosh profile image
Oshgosh

do you have access to a physio.

I go to a sports physio If my sciatica flares,she can relieve it.

She keeps me staggering on with m multiple conditions.she is private,but we’ll worth the money xx

Djemima profile image
Djemima in reply to Oshgosh

Im waoting to see a normal physio and been waiting over a year to go to the fibro clinic im really not getring anywhere fast

Al10 profile image
Al10 in reply to Djemima

I take it you are in contact with GP who is not concerned that the pain indicates anything we need to worry over? Just that Physio may help?

Also, how long does he recommend taking meds before we need to conclude they are doing nothing? I'd suggest if you take as recommended and you recieve no benefit you need to go back to the Quack and discuss this. Perhaps there are other meds? And if you are swallowing everything you can lay your hands on in desperation, can I caution you to STOP? It's a really bad idea. More meds doesn't always equate to less pain. Sometimes, quite a lot, it can equal more pain. Just saying. And you may do yourself serious harm.

Then, if after the GP has had another think, and still nothing helps, you need to be brave and stop taking them. All meds have side effects and pain meds long term can cause issues with liver kidneys etc which is something you dont want to be adding to your woes. Only take meds if they work for you. There are quite a few folks who have improved after quitting all meds. Weird huh? But sometimes meds cause more problems than they solve.

Also, if you have a notion of what the GP wants the physio to work on, and an appt isn't happening, ( you should ask GP to ratttle some cages on your behalf if you are waiting too long) you could go off piste? Youtube have a selection of videos made by expects, (and others, so be discerning!) if you can put in the right search words you might find an expert to show what excersises you could try. I particularly benefited from Bob and Brad, so would recomend to others to take a gander.

As always, use your discretion/caution. Don't do stupid stuff, don't over do. Always excersise gently and methodically following the instructions. Lots of folks think doing lots, is better than doing what they are told. Or that straining is better than being gentle. They still seem to think if they 'feel the burn' that will be the charm when it really wont be, esp if you are a fibro!!

I really benefited from their gentle stretching exercises. Initially I thought, pah! Nothing is happening. But I'd run out of options so felt I had to continue. In a couple of days I could really feel the difference. and as I continued it got better and better. I needed to keep up the regime but that was a small price for the amazing reduction in pain.

Hope you can find something that helps.

Djemima profile image
Djemima in reply to Al10

I take around 16 different painkillers a day they dont help un scared to come off them and going cold turkey

Al10 profile image
Al10 in reply to Djemima

Yikes! 16? Different sorts? Did you ensure they were checcked to ensure they can all work together safely and effectively? Have you asked your pharmasist for an opinion? How long did it take to get on so many? (gives an idea of how long it might take to get off them) You are right to be concerned about how to come off them. Some can be awful not only physically but mentally and emotionally too! So take advice before acting to ensure you don't have to suffer. If you are not doing well taking them, you should be talking to your GP about possibly dropping them bit by bit. Meds are a massive problem regarding pain and other side effects. They can make pain worse!! Fibros are helped on to meds because they are so desperate, and end up swallowing them like smarties. we imagine if we take enough, eventually something will help. Or you just end up a little or a lot poorly or crazy or both (can't imagine who might own up to that🙄🤔).

My experience is meds don't work for my fibro. Or, if they do, the effect is temporary before you start to need more and more, and then, either you are at the limit or they just stop working. Pain is supposed to be temporary. Meds are designed to deal with this temporary pain. Fibro pain is different. Likely it needs a different approach. Lots of factors are involved. Drs have long told fibros the pain is in their heads which is so insulting. The pain is real. However, it is clear that stress etc makes any pain so much worse and it makes it hard for it to resolve. Dealing with stress and what some now call doing your Shadow work can be a lifeline for those whom like me, do not benefit from drugs. (You tube has some great videos on Shadow work to get you started.)

Maybe you already know, but Shadow, is like your triggers. The things that you can't help getting upset by. Calming and removing those triggers can be very freeing. No longer can life yank your chain. Imagine going through life and not getting upset and stressed by stuff.

Stuff is just another adventure. Something you can deal with and that maybe will be interesting or even fun? When you can accept what is, without panic, or anger etc, life gets easier. I find, as I get older the bad things that happened in my life were actually pretty important and led me to good things. They prepared me for greater challenges. So what I'm saying is, what ever happens in life, you will deal with it, probably better than you fear, you will learn loads in the process and it will likely make you an even more amazing human being as you progress through your life. As it should be?

Life doesnt have to break you, or make you bitter, unless you don't deal with the 'shadow' as it comes up for you.

In the depths of pain and suffering, there is much to learn about yourself. The big one is how tough. Even when you are crying and broken, when you meet the tomorrow, remember how you feel amazing, that you made it through? And once you have gotten through, you can help others maybe?

Trigger alert!

I'll never forget a fella telling me how he was helping a sick kid. Ew! And he was so kind. The kid was terrified and hurting. He coached him to relax, let it go. How it didn't matter. How it hurts less just to hurl instead of fighting. That comes from someone who really learned to vomit. It was a good lesson. Don't fight the pain, relax into it.

I hope there is something in what I've written that can help you. There is hope.

Michelleswshopping profile image
Michelleswshopping in reply to Djemima

Just bare in mind if u go to a physio , it might not work straight away or not at all depends how bad u are . Ive been for over teo years to mine and pay private and had done nothing . Xx

fmlife profile image
fmlife

this may help your gp, fmauk.org/information-packs...

if not help afterwards see another gp

please do not over dose on pain killers, if think have, get to an a & e quickly,

moo196 profile image
moo196

osteopath should be able to help you with this

Jaycee18 profile image
Jaycee18

I feel for you, lower back pain is awful. Gentle movement and heat pads work best for me. Hope it eases soon.

Angeleyes8 profile image
Angeleyes8

Hi I suffered 2 years and the last 8 months of it I had to keep my leg elevated gp thought it was a kinked vein and waited months for vascular department but it wasn't vein I then had to borrow money and go private it turned out to be a disc resting on a nerve end which caused a lot of inflammation, ask your gp for mri scan on your back, good luck I feel for you big hugs x

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