Help feel hopeless with fibromyalgia pain

[Loladipdip2]

Hi I’m a newbie on here I need help I’m in tears in pain with my hips .fb is kicking my butt and I’m only just holding out on using a walking aid 😔. Pain relief is just not cutting it and it’s impossible to get a doctors appointment . Don’t know what to do........ help any advice please is welcome .

Thanks

[greenblood]

Hi your post is so familiar it could have been written by my daughter. She was diagnosed last year and has got steadily worse. Same as you putting off using a stick but it seems inevitable. We have tried everything we can think of, have you had any treatment?

[Loladipdip2 in reply to greenblood]

No still waiting to see the fibromyalgia team but referral is in still waiting 6+months on . I’m sorry to hear about your daughter let her know she is not alone x

[seren1970]

The only advice I can give is try not to push your self and over do things as this can make us feel worse I hope you soon get to see a doctor xx

[greenblood in reply to seren1970]

Totally agree my daughter said same thing x

[Loladipdip2 in reply to seren1970]

Hi Thankyou so much but as a single mum of 2 young children it seems impossible I could cry .yeh seem to be in there all the time trying to find the right medication . Thankyou for your advice and kind words xx

[Shoppingwales]

Hi hope you are feeling a bit better!!! I am in the same position but with back pain doesn’t matter what treatment I take painkillers just not touching it! Has this pain dorn3 weeks not every day tried positive thinking, Epsom salts , hot baths water bottle and no success. Drs a joke but got an appointment for next Tuesday, never thought I would see the day when a drs appointment got me excited !

Hoping that get some miracle table that will make life seem normal and a day where I’m not miserable . Hope you find something that eases pain for you take care x

[Loladipdip2 in reply to Shoppingwales]

I know that’s all we can do is hope we all find the right doctor with the right treatment 😔. Just bought a stick this evening as I’m just lost .

I hope you get the help you need on your appointment I’ll send good thoughts your way xx

[Shoppingwales in reply to Loladipdip2]

Awh bless you, stay strong thinking of you!! Xx

[Bluenordic]

Hi Loladipdip2, it sure sucks doesn't it ? Your words could have been mine just this time last year. Newly diagnosed, happy with that as it gave me answers but ho hum now what to do? Pregabalin from Dr awful side effects, now on Gabapentin but not for me as side effects are so bad with no change in pain. What I have found helps enormously are a couple of things. Hot tub for at least an hour a day at 37 degrees. Not a big expensive one but one from Aldi. CBD oil, started low and worked up to a % that suits me. Swanson celadrin joint cream, not just on joints but all over as well as 5kind hemp active gel. I also am on vit D as levels low and magnesium. I fought using a stick for about six months but now use it regularly, it's better than falling over.

I initially asked for a referral to Guys specialist fibro clinic in London and found them to be very informed, empathetic and helpful. They wrote to my GP suggesting a course of action. So I also see a Rheumatology physician every 3 weeks for gentle exercise. Has my pain gone ? NO but I feel more in control of it. One of the other things I have found is that my all over pain which I call my pain buzz, the one that is always there, seems to have something to do with my skin. So if get in the hot tub its not necessarily the heat that's helping but rather that my skin is being touched all over so my brain doesn't know where to target the pain so it doesn't. I have the same effect and relief from putting a fan blowing gently over my body, that's why I say it's not necessarily the heat.

Hope something here helps you all the best.🤞

[Loladipdip2 in reply to Bluenordic]

Thankyou that helps so much just about to get into the bath to ease the pain . I’ve been referred to fibromyalgia specialist but it’s taking so long and I’m losing the will . The doc gave me new pain relief today don’t know what it’s called but due to my pain I was unable to go and get it from the pharmacy ☹️.

Yeh Thankyou so much I worry what people will think of me with a stick plus I have a 2 year old so ide imagine juggling him and a stick impossible 😬.

I’m glad to hear there is a light at the end of the tunnel and Thankyou for taking the time to respond.

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Rest .heat pads .pain relief ...less is more ..slowly mindfully ..then repeat xxx good luck