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Fibromyalgia

(14 Posts)
Houseseller Tue 01-Oct-19 18:58:37

Please can anyone offer advice for my friend who suffers extreme pain with Fibromyalgia. Many days she is unable to function because of the pain which is causing deep depression. The doctors response is just get used to the pain. My heart goes out to her but I have no solution. Any practical advice welcome.

paddyann Tue 01-Oct-19 20:07:14

My daughter has Fibro ,if your friend is like her then pain relif that works only works for a short time.She did have afew months relief from Acti Patch ,you can buy that online or at Boots and its worn 24/7 .The patch works ofr a month and costs about £20 though she did hear it was available on prescription in England.It would certainly be worth trying.The thing shes trying now is CBD oil in gummies form ,looks like wee teddy bear sweeteis and they have given some relief .Sadly my daughter isn't getting better and has morphine at home along with a cocktail of pills that she takes daily .I hope your friend gets some serious help from her GP.she should ask for a referral to apain clinic and see if they can offer advice .Good luck .

mcem Tue 01-Oct-19 20:56:37

My daughter is in a similar position to paddy's. She has more bad days than good. One thing that helps, apart from all the obvious painkillers is a 6-weekly infusion of lidocaine hooked up to a drip and in hospital for the day.
Exhausted the following day but then picks up, has a couple of ressonable weeks before the downward spiral kicks in again.
She should ask to be referred to the Pain Management team if the local hospital has one. (Run by a team of anaesthetics specialists).

Oopsminty Tue 01-Oct-19 21:08:12

I've been diagnosed with Fibromyalgia. It's debilitating and so hard to come to terms with.

Has your friend been referred to the Pain Clinic? There are some drugs that can be prescribed but they've not provided me with much relief.

Much talk of 'managing' pain which can be very frustrating.

CBT is also suggested but there's no magic pill I'm afraid.

SalsaQueen Tue 01-Oct-19 22:02:06

My 38-year-old son has Fibromyalgia, and he feels the pain mostly in his feet, hands and legs. He works full-time, luckily in a clerical position, so no manual labour. He takes Co-Codamol, the maximum strength, but some days the pain is so bad for him. He was referred for Physiotherapy and found it helped a bit.

Houseseller Wed 02-Oct-19 11:49:01

Thank you all, I will pass on your comments to my friend

Oopsminty Wed 02-Oct-19 11:55:40

Hi Houseseller, you're a great friend.

I re-read my comment and felt it was a bit doom and gloom so just thought I'd mention that Fibro has a strange 'staging' almost. Once diagnosed you go through different stages, denial, anger, grief etc etc. I should google to find what I mean.

How long since your friend was diagnosed?

I have finally accepted the diagnosis but it took a long time!

We are all different and people are affected differently. Some people are able to live pretty 'normal' lives and others end up bed bound. The majority somewhere in between.

www.everydayhealth.com/pain-management/fibromyalgia/stages-fibromyalgia/

I forgot to mention I go to acupuncture, which isn't a cure, but I do find it helps as I'm lying there with all my needles! I can even fall asleep during this which is amazing seeing as pain can prevent sleep

Good luck smile

BradfordLass72 Thu 03-Oct-19 08:51:24

My ex-Pastor's wife suffered very badly from this and was told it begins with disturbed sleep patterens: waking often, not being able to get back to sleep for hours and so on.

This disturbs the brain waves which then results in messages which 'shorten the muscles' (don't ask I'm only repeating what I was told).

The remedy was to reprogramme her sleep habits and, supposdely her brain to stop sending muscle-tighteing messages.

Her sceptical GP laughed when she suggested it but she went onto experimental therapy which entailed 6 months on Valerian, magnesium chelate and melatonin with magnesium cream to massage into aching areas.

They also had a spa pool so she was able to relax in that each night. I guess a hot bath might do the same?

She felt the relief quite quickly and the last time I saw her was very optimistic and chirpy (from being depressed and in a lot of pain) and had stopped taking the pharmaceutical pain killers which she'd already found less than helpful.

They moved away so I can't give you an update but if your fibro started with a long period of disturbed sleep (or even if it didn't), this might help.

I offer it for what it's worth and hope it can help.

madmarchram Sun 06-Oct-19 14:23:47

Hi there,

Houseseller, I have no further advice to suggest or give but could I just say what a lovely friend you are smile I would love to have a friend like you, sadly as I no longer go out and about due having fibro and other health issues myself, I actually have no one ( other than husband, ld son, dog) in real life to talk to never mind befriend.
I do hope your friend gets help for the depression ( another horrible condition) and finds something that helps with the pain soon. I tend to just go with doing a bit and resting a while, in equal amounts and self guided visualisation on the basis that the more relaxed my body is, the less pain I should hopefully feel - doesn't always work but I live in hope.

Ashman Thu 28-Nov-19 14:44:20

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Ashman Thu 28-Nov-19 14:45:29

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Tricia55 Sun 01-Dec-19 09:15:25

Houseseller, sorry to hear of your plight.
I too have Fibro., as for the pain I think if I had found the answer, I would shout it from the rooftops, as yet I haven't I was given Oxycodone a couple of years ago, but after reading many many horror stories from America, I've been weaning myself off them, what happens next I've no idea.
Pain is draining, yet we wait patiently, for some medical company to come up with a miracle.
It's so good we have Gransnet to come too, it's calmed me down many a time.
Triciaxflowers

Missfoodlove Sun 01-Dec-19 09:24:03

There is an amazing supplement called NAC that has helped many sufferers.
It is something of a miracle compound that has many uses and benefits.
I take it every day without side effects.
Do your own research but there have been positive results for fibromyalgia.

Tricia55 Sun 01-Dec-19 19:25:56

Hello Missfoodlove,
I looked up the supplement you suggest, but it would appear there are too many possible side effects for me to trust it, although I'm sure it all goes back to what works for one might not for another.
The cold weather is worse.
I used to love the hubbub of Christmas, the shopping, wrapping, sending cards, I haven't sent cards for the last two years which means loss of contact.
My fault I know.
Triciaflowers