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Fibromyalgia Action UK

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Fibromyalgia misery

lesleyanne1962 profile image
13 Replies

Hi, This is my very first post and I am nervous but I hope someone can help me.

I have suffered from fibro for about 9 years and I am finding life very difficult. I also suffer from kidney disease so medication is limited. My pain is bad every single day and my painkillers don't work.

I don't know what to do or who to turn to because my doctor says there is not a lot more that he can do for me.

Thank you,

Lesley

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lesleyanne1962
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13 Replies
rosewine profile image
rosewine

Welcome. Don't be nervous as we are all in the same boat and understand now difficult fibro is to understand and deal with. It must be especially difficult for you with your kidney disease, my best friend also suffers with it and as you say it radically cuts down your choices as far as medication is concerned.

Have you had chance to look around mother site Fibromyalgia Action UK as there is some very good information on. Alternative methods to try and make the pain of fibro less. I am fortunate that I can take several medications that do take the edge off but can't take antidepressants which many people find help with not only sleep but pain.

I have found that certain exercises given me by a physio have helped with my core strength so my back painnjs easier than it was. Epsom salts baths can help. Magnesium sprays help some people with the muscle pain. Hydrotherapy can be marvellous as it is much easier to exercise in deep, warm water. I use my PIO money to have treatment from an acupuncturist versed in. Chinese medicine who looks at the whole person rather than just dealing with the pain . I found him more knowledgeable about fibro than any of the doctors It have seen and he has given me good advice on pacing and diet.

Hope some of the above helps you.x

honeybug profile image
honeybug in reply to rosewine

Great reply rosewine 🦋🌿

🌸🦋🌿☔️💦🌈🦋🌸🌿

😊🌸 🤗💕😘

lesleyanne1962 profile image
lesleyanne1962 in reply to honeybug

Hi thanks so much for your suggestions they are worth a try. Xxxx

honeybug profile image
honeybug

Welcome lesleyanne1962

🌸🌿🦋🌸🌿🦋🌸🌿🦋

I cannot take pain meds for my fibro and other conditions due to GI and allergy problems but I am being treated for the rarest form of Erythromelalgia with an antidepressant which prevents depression for me too.

🌎🌿🌎🌿🌎🌿🌎🌿🌎

I read rosewines reply and there are great suggestions there. Please don’t be nervous dear...no one cares about typos or correct grammar here. We are all here to support share care and encourage each other 😊💗.

☔️💦🌈☔️💦🌈☔️💦🌈

I hope you find some relief soon sweetie. 💕💕

Gentle gentle hugs 🤗 love 💕 and kisses 😘

😊🌸🌿🦋

CBD oil works for some. Have a read about it.

Take care xxx

Milynda profile image
Milynda in reply to

CBD has reAlly helped me along with water exercise and magnesium tablets.

Dizzytwo profile image
DizzytwoModerator

Hello and welcome lesleyanne1962 it's nice to meet you:) Please don't feel nervous we all understand what your dealing with and your amongst friends.

You may like to lock your post post for privacy reasons. Also it may generate more replies. This link will show you how to lock this and future posts if you want it locked.

healthunlocked.com/fibromya...

If you need further help with this I'm sure any of the admin team will be happy to help.

I have had Fibro for over 30 years and I can not take medication so understand how difficult life with pain everyday can be.

People always ask me how do I cope. To be honest I don't know. I have never known any other kind of life. When it becomes too extreme like now. I take myself off to bed after a nice warm bath along with my hot bottle for my lower back.

Sometimes I use gel packs from the freezer depending on the type of pain. I find my tens machine which I've been using for over 20 years a great help.

Distraction works wonders for me I use the adult colouring books I read I knit or crochet. Anything I find interesting or enjoyable. The one thing I have learnt the more I think about the pain the worse it feels.

You may like yo check out the main Website it has loads of helpful information I'm sure you will find useful.

fmauk.org

I hope you find relief soon xx

Momo

Hi there everyone

There are some great replies. I'm struggling too. I also have non alcoholic steatohepititis, under active thyroid, gastritis, IBS, diverticulitis to name but a few!! Hope you improve very soon. Love and hugs Lynne xxxx

Hello Lesley welcome to the forum you say you have fibromyalgia 9 years have you got a diegnosed in writing

LadyJoro profile image
LadyJoro

Pain killers tend not to work more than taking the edge off.

Have you discussed natural remedies with your GP?

Magnesium and vitamin D supplements can help, light therapy, massage from a soft tissue specialist and resistance training are effective long term coping methods, all with some scientific evidence.

My favourite, although currently not studied enough is CBD oil.

lizashfield profile image
lizashfield

Ask your doctor to refer you to a pain clinic. I attended a series of sessions at mine. Not all of it helped but some of it did. In addition it gave me the chance to meet and talk to other sufferers.

Sarahvit profile image
Sarahvit

Hi Lesley, I’m sorry you are going through all of this pain and frustration. I would recommend you get a second and some cases a 3rd opinion. I have been living with this awful condition for over 25yrs. This is a hard think to live with and you need a doctor who will try to help you and not just give up. You need an oldlet to relieve your frustrations. This is a good site for support. I recommend you get a second opinion. Hugs 🤗💕🦋 I’m sorry I’m not of better help. I’m in a lot of pain and sleepy right now. Need of a Sunday afternoon nap.

Hi

I was diagnosed last year. I can't imagine how hard it must be for you all suffering so much longer than me. Nothing seems to touch it. I have other non alcoholic steatohepititis, fibromyalgia, gastritis, under active thyroid, IBS, diverticulitis and nausea to name but a few!!! I'm on pregabalin, nortriptyline, zomorph, oramorph, fexofenadine, prochlorperazine, thyroxin, I think that's it!! Love and hugs to you all. Lynne xxxx

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