Advice please. : I believe I have... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Advice please.

Susat80 profile image
20 Replies

I believe I have Fibromyalgia as I suffer from severe hand and foot pain plus balls of my feet are very painful walking, hands I can barely use in morning. I do kick my legs about but have exma so am not sure. I am taking methadone on a maintenance script for over 20 years. My symtoms have built up over 18 months and got steadily worse.

I see my Dr next week ( being an addict real medical help is not seen as worth investigating .

Any help would be much appreciated. Thanks

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Susat80 profile image
Susat80
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20 Replies
Bobby3 profile image
Bobby3

Sorry what do you mean kick your legs about at night ?

Do you have pain in your back? Or anywhere else? Or just hands and feet?

Susat80 profile image
Susat80 in reply to Bobby3

My shoulder and knees. The kicking legs was wondering about restless leg syndrome.

Thanks

Bobby3 profile image
Bobby3 in reply to Susat80

Yes I think kicking is restless leg syndrome we got that but thankfully not every night. You may have arthritis if it is manly in your joints? Fibromyalgia is more the muscles 💪🏼 but a lot on here have osteoarthritis on top of their Fibromyalgia.

Susat80 profile image
Susat80 in reply to Bobby3

I have no swelling around joints and pain in palms of my hands also feet are painful to walk on. Have been to hospital and was told it was muscular damage and advised physiotherapy. Have pain just holding phone and typing with 1 finger. Thanks, I have to stop this, really appreciate your information.

makemepainfree profile image
makemepainfree in reply to Susat80

One thing it could be in your feet is planter facietust not sure if that's right spelling

M0AL61 profile image
M0AL61ModeratorVolunteer

Hi Susat80, and welcome to our lovely forum.

I would suggest that before you go back to see your GP again you make a list of all your symptoms so as not to forget anything, and then give it to your GP.

If you go to our mother site at fmauk.org you will find a lot of useful information about the varying symptoms etc.

Susat80 profile image
Susat80 in reply to M0AL61

Cheers

makemepainfree profile image
makemepainfree in reply to Susat80

Can you tell me what the tests are for fibro?

deejames profile image
deejames in reply to makemepainfree

Testing for fibromyalgia is a question of testing for other things which your symptoms suggest, in a process of elimination . Eventually if all the tests are negative then a fibromyalgia diagnosis is likely.

Dee

makemepainfree profile image
makemepainfree in reply to deejames

Thanks for reply

Rainbowflute profile image
Rainbowflute

My understanding of joint pain in Fibro is that it is pain without the swelling associated with Arthritis. They can do a blood test to assess your inflammatory markers. No markers means no Arthritis. Have you also looked up Neuropathy? That may explain why the pain is mainly in your hands and feet as Fibro pain is much more widespread. I hope your dr pays attention to your pain problems and is sympathetic. Can I just ask? Is there pain relief you can take being on methadone? It’s going to rule out the strongest range of pain relief, being opioids isn’t it? I hope you get some answers!

Susat80 profile image
Susat80 in reply to Rainbowflute

Thanks for your reply.

The methadone will make pain relief difficult as I have a very high tolerance ( I'm not proud of this fact) I was hoping gaberpentin/ pregabs would be a pain relief. But I have been using extra methadone to help pain. I still need to learn a lot and if diagnosed will be trying to change my eating, vitamins and what ever else may be of help. I was put on high dose vit D supplement after a blood test. Thanks for your reply and help. 🎸

Rainbowflute profile image
Rainbowflute in reply to Susat80

Hey Susat80, no judgement from me I promise! However if I was you I would definitely be looking at essential oils to see if you can choose oils that target specific types of pain and maybe help with relaxation too (pain causes tension which makes pain worse!) I would advise a specific company that I represent, not because I’m a rep for them but because I know they are guaranteed to be the purest and safest on the planet! I can help you find out what oils are worth trying at first and then build a personalised range to help you in every area if you are interested. Feel free to do your own research but I know how well oils can help and I’m really only starting out (been using this make for about a year now) I do hope you can find something that helps!

Susat80 profile image
Susat80 in reply to Rainbowflute

I will and am interested in just pain relief and stress relief I also have bad psoriasis on my lower legs parts of the hands and scalp. I hate the steroid meds I'm given as they don't even work. Hemp oil I read could help but I know very little about oils.

Thanks again for your support

Hi there. Magnesium is good for pain and can also help restless legs. B vitamins are good for nerve pain, particularly vitamin b12 and b1. B vitamins also help fatigue, as does coenzyme q10 in the right dose.

Sometimes people also get relief from cutting out the major food allergens (dairy and gluten). "Studies have shown that certain food proteins can induce inflammation via direct activation of the innate immune system".

I am slowly improving my very severe hand and feet pain by doing the above. I am also embarking on a detox programme as i was too high in some toxic metals which cause neuropathy, fatigue etc too. I am really hoping that once the toxic metals are out my system, it will reduce my hand and feet pain more. Fingers crossed.

I hope this info helps you! 😃

Sources:

doctoroz.com/blog/jacob-tei...

ncbi.nlm.nih.gov/m/pubmed/2...

ncbi.nlm.nih.gov/m/pubmed/9...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

Susat80 profile image
Susat80 in reply to

Thanks so much for your support and reply.

in reply to Susat80

No problem at all. I know its hard when your poorly. I hope that you get better.

LadyJoro profile image
LadyJoro

Have you completed the new assessment worksheet?

It’s the same questionnaire I was give before I attended the rheumatologist.

neuro.memorialhermann.org/u...

You’ll also need a full blood work up to rule out other causes like arthritis before fibromyalgia can be confirmed.

Treating Fibromyalgia requires good self discipline, self care and natural remedies are as important if not more so than medical interventions. Check with your doc before taking supplements just in case it messes with your current meds.

Do anything you can to improve your sleep, no screen time an hour before bed, cool room, heavy blankets, black out blinds, same bedtime and wake up time every day. Lavender helps too.

High strength Magnesium, high strength vitamin d, tumeric and a good multivitamin all help with pain

D-Ribose helps with fatigue

A good probiotic helps with stomach issues and adrenal fatigue

I find peppermint, rosemary, lemon and grapefruit essential oils in whatever combination you find pleasing help with focus.

And don’t forget to see the sun (or a sun lamp) studies show an hour each morning helps with pain.

And lastly gentle exercise, water based or Pilates progressing onto resistance bands. Focus on core strength first.

If you need more information or help with an exercise plan feel free to send me a message.

Susat80 profile image
Susat80

Thanks. So nice to have good people to ask about something not easy or facing unhelpful Drs.

Al10 profile image
Al10

Suggest checking your shoes. Support your arch if you have one. Down at heel shoes, sandals etc can be bad for feet. Plantar fasciitis is terribly painful and treated by excellent fitting shoes.

Go to a good shoe shop and get proper advice. expensive I know but worth it when the pain goes. No fancy heels I'm afraid. Oh maybe look at B6 levels? If B vits lacking or poor diet in general, it wont help. Carpel tunnel can be linked with Thyroid issues and B vits. Or repetitive strain. Rest can help. Also Icing can help. Read up how. Think it is 5-10 sec bursts in ice water, recover and repeat through out the day. up to 10x per day for a few days. Dont take my word for it though read up first!! Hope you get relief soon. Best to fix underlying prob rather than block pain coz pain is gonna keep telling about the prob needs fixing.

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