Feeling useless

[greenblood]

Hi my daughter was diagnosed last year with fybromyalgia and we have tried many things . Hoping this site may give us some new ideas or just support.

[Dinkie]

Hi and welcome to the club none of us particularly wants to be in.

Unfortunately, as you have probably found, fibro is different for all of us and what works for one person may not necessarily work for another.

Medications work for some but I seem to suffer side effects from all of them so rely on other methods

For me, no processed foods or refined sugars, if I stray from this then the fibro is likely to flare.

Epsom salt baths help with muscle cramps/pain.

Wheatbags, hot water bottles, heated shoulder/neck cape (Lidl special) help too.

Biofreeze gel - my chiropractor uses this on me and it really help.

My skin is photosensitive so I have to use factor 50 and not just in summer.

Vit D - low vit D is common in many fibro folk. Lack of vit D causes muscle pain so worth getting levels checked. GP gave me 20,000iu every other day to boost it. Must be monitored though as high vits and minerals can cause their own problems!

Tens machine - many get relief from this, myself included.

Supplements - I take various as recommended by consultant

Gentle exercise - this can even be just stroll down the garden for me but it is important to do as much as possible without overdoing it.

The art of pacing oneself - this is still work in progress for me because on better days I want to do all the things I didn't get done on the bad days. Cue time for relapse/flare.

I could go on but don't want to bombard you with information

Ask any questions and don't be shy about it - no question too silly as believe me someone will have thought it, asked it or answered it before

I am sure others will be along to give some advice too

Take care

Dinks

[Butterfly1004 in reply to Dinkie]

Just been diagnosed after many frustrating years of not knowing what was going on with my body. It took a referral to a rheumatologist and a lot of tests to get to the bottom of my symptoms. I learnt it can be hereditary and some women develop it after breast cancer and treatment - I can tick both boxes as my dad had it and I had breast cancer in 2012. The symptoms came on after chemo and radiotherapy. So frustrating that it's taken so long to diagnose but apparently thats common.

I work full time and really struggle with the fatigue. I get so frustrated not being able to do very much before that feeling like you're walking through mud hits. The many pain relief medications my doctor given me in the past has left me feeling so spaced out that I've had to stop them.

I started to put some of my symptoms down to menopause, but realise now that's not the case, though the hot flushes are down to menopause.

I'm upset with the diagnosis, but also relieved to know what I'm dealing with at last so that now I have answer and I can do what I can to manage the symptoms better.

I found your post really helpful and will take your suggestions on board.

Thanks 😊

[Jamsiet]

Welcome to a fantastic Q&A website with friends included!! There will be always someone going through the various symptoms/pain that your daughter is going through. I'm sure that someone will be able to 'advise'.

Welcome to the site

x

[dinkic]

Best thing you can do to help is be supportive give help where its needed and back off if its not, everyone is different but it can mean good days and bad, bear with her if she need time and space

[greenblood in reply to dinkic]

Thanks it’s hard to watch her in pain. Now the doctors are reluctant to give her any more tramadol, said the pain clinic will advise and then the pain clinic cancelled her appointment which was in may anyway so ages off. Can’t get another doctors appointment for a week to see what is happening also she has severe anxiety so I have to go too and I don’t live very near it’s exhausting but I will do whatever needs to be done as long as she wants me to this fybromyalgia is awful. Thanks for your advice xx

[stay_calm in reply to greenblood]

Hello, greenblood!

So sorry to hear that you're experiencing this.

My hubby has fibro.

It sounds like you have the medications covered and since he's allergic to most of them anyway, I can't help you there.

My advice would be learn to pace yourselves, listen to her body and rest when needed. Having said that don't stop going out and doing things the less you do - the less you are able to do. Sometimes things need an extra bit of planning. For example can you get as close to a place in car as possible so she's not wearing herself out walking there and back.

We've learned a lot from fibro sufferers in person and read a lot about it:

webmd.com/fibromyalgia/guid...

Also, it's important to have a good night sleep. We have a few tips that might help you daughter be able to relax more and sleep better. Find her a thick fiber or feather, or foam mattress pad. Lay this on top of a regular mattress (or find a special one: talkaboutsleep.com/best-mat.... She might need a larger bottom sheet to cover up over the pad and your mattress.

I hope that you can find a satisfactory treatment after all this time.

[greenblood in reply to stay_calm]

Thank you that’s useful xx

[dinkic]

Think by understanding you are probably helping more than you think. The pain clinics are very good, do not know where she lives but if she could be referred to the one at the QE in Birmingham it is very good and has helpline if she is struggling daily. I have moved 21/2 hours away but I am staying with them. Its awful at its worse I have had it for 15 years and had to give up a professional job because of it but it is worth trying to get help. GP's try but it is such a specialised area they are just hit and miss with it. I have heard awful things about Tramadol and Gavapentin (not sure how you spell it) they can cause weight gain and that makes frybro worse. I am on oxycontin and alot of people seem to dislike it, yes it can be habit forming but I know I am on meds for life so what the hell and in small doses it give me some kind of life, keeping fighting for your daughter cos she probably feels like giving up, I know I did for years. Good Luck hope all goes well

[greenblood in reply to dinkic]

She is on pregabalin which she says does nothing only the tramadol gives relief doesn’t seem to cause weight gain if anything she is very thin. Haven’t been told about oxycontin?? She really needs walking aids but is too embarrassed. She has also passed out a couple of times, once burning herself badly but no one knows the cause despite tests and as you say not enough is known about it yet. Hope you’re having a good day today and thanks again x