All your fibromyalgia experiences, questions and answers.

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Postby Tracey24 » Fri Jun 05, 2015 10:25 pm

Hi my name is Tracey. Please can someone help. I am really struggling with my FMS/ME. The pain seems to be controlling me instead of the other way round. I am now taking sixty two tablets a day a combination of pain killers, muscle relaxants, anti depressants and others. I have tried many things to help, gentle exercise, muscle rubs, heat pads, acupuncture, physiotherapy, altering my diet but nothing seems to help bring the pain down to a comfortable and cope able level! Is there anything else people have tried that could possibly help me.I would really appreciate some ideas. My partner is a fantastic support I would be lost without him, he does everything for me around the house. I still manage to go to work but it wipes me out but I think I would just get more depressed if I stayed at home everyday. I apologise to ever who is reading this post because it just seems like I'm moaning but I really need some help!

Thankyou for listening xx

Keep fighting, smile through the pain!
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Re: HELP!!

Postby GaryFx » Sat Jun 06, 2015 2:16 am

Hi Tracey , I to suffer with FMS/ME And have done for about fifth teen years now, I am only taking a few pills now as I found most of them to be totally useless and with the side effects of some of them I felt a little better by not taking them. But if your taking all those pills every day you should try cutting some out and you may feel your symptoms start to feel a little better, Over the years I have realized that what ever I am prescribed never really makes much different so I can't see the point of putting all that rubbish inside my body. I am now on pregablin and tramodol which help a little but you just have to learn to live with the pain I guess , one thing I did try once for a little while was cannabis and found it to be really good for relaxing the muscles and reduced the pain unfortunately being an illegal substance makes it difficult to get hold of but I have read that it can be prescribed for certain things and it comes in pill form so it might be worth enquiring to see if it's available with your GP . As for work I managed to stay at work until last year but in the end I was just so wiped out and in so much pain every day I decided enough was enough and it was no longer worth the suffering and gave work up and I must say that has made the biggest improvement so far , yes it does get a little depressing because you feel as if you have been thrown onto the scrap pile so to speak but there are things that you can do on better days and it just takes a while to adjust but you do after a while and your outlook on life changes. I'm sorry I can't be much more helpful but I suggest you take the time with your partner to reevaluate your lives and go from there let your partner know your fears and be honest with them about just how you feel and I'm sure you can make adjustments in your life where you may start to feel a little better and you will be able to get rid of some of them pills because at the moment you will not find a cure from a pill it's a life style change that will make the difference. I hope you start to feel better soon all the best.
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Re: HELP!!

Postby TheHud » Sat Jun 06, 2015 9:03 am

Spot on GaryFX.

I have only recently been diagnosed with FM but I have been in agony and had exhaustion for as long as I can remember. I also take pregab and use codeine at night with a combi of ibruprofen and paracetamol to get enough to knock me out and take the edge off for a few essential hours sleep.

When the pain hits the roof, which it often did before the pregab as in all engulfing and can't even go to the toilet without hitting the floor, i use a TENs machine. What I have found is that putting it directly onto a nerve point helps for a little while but can fire off the nerve spasms if you are not careful. The best use of it is to put the pain somewhere else, basically make a non hurt area, set on tingle, get the pain as a distraction method. My dad suggested banging your head against a brick wall would do the same or as he did, make a hot water bottle so hot it burned him. Yes well.

Chronic pain is all absorbing and as someone on here has said, accepting it as part of your life is part of the battle. I spent 30 years thinking why me and every few years putting myself forward for tests to diagnose and hopefully find out what is wrong and then they can take the pain away. Does not work like that, people with FM often have many other problems that all get diagnosed, as have mine until the list is endless. All the diagnosis's in the world will not make it go but you have to try and shove the pain from your mind and give yourself a break.

My husband in a pain management specialist nurse practitioner, phew, he mainly deals with acute pain which he can bombard with drugs to help people, he is the one that eventual came to the doctors with me and explained what I needed, pregab, not gavapentin which is the cheaper option. But given his massive knowledge about pain, he still has no answer to FM and patients in hospital for other things can only ever get moderate pain management because the nerve pain compared to a standard patient.

We do have hope, new research and new findings about why we have this, may help. Many people get this after trauma or big ops (hubby) and now treatment is managed post op, trauma with pregab to try and prevent the pain becoing chronic. It is known, some of us just get stuck.

Take care and think happy thoughts, look at the sky and marvel at stars, moon, clouds, colours. You can still see the beauty if you let it through.
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Re: HELP!!

Postby Tessa2373 » Sat Jun 06, 2015 10:36 am

Hi I have fm as well and like you am struggling badly. I take loads of pills and even morphine sometimes. I've started taking magnesium and it seems to have helped at but and I'm sleeping a bit better. I work but it wipes me out too. I recently had to reduce my hours because it's just too much. My husband tried to be supportive but he doesn't know how and it's really pushing a big wedge between us. I feel like a painful blob slot of the time but know I just have to keep going for my kids. I have no magic answer as no one does but it's helpful to talk to other people who suffer from this mind drilling pain which we can't escape from. Love to you all and keep going xx
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