Can you get Fibromyalgia is your hands, feet and face?!

Hello, newbie here. I`ve had Fibromyalgia for nearly 10 years. I know where all the fibro points are. In the last few months I`ve got a totally different burning skin pain to the burning fibromyalgia pain. It started in my feet, hands, face and lower legs, then has progressed to all my legs and arms. To describe it would be hard but it feels like I`m being burned alive every day. I also get these electric type shocks on my skin (which I`ve never had before). My doctor says it`s "the fibromyalgia progressing". I`m pretty sure you don`t get fibro in you face, feet and hands! Does anyone else experience these things?

18 Replies

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  • HI Leisel-12

    I have pain in my face - burning, tingling, knorring mentioned it to doctor who said its fibro. Mentioned it to Dentist who is referring me to hospital as could be Salivary Glands but I do have a misplaced Jaw which often clicks so could be that too. I would describe some of the pains I get as electric type tiny shocks over my skin - especially in tips of my fingers, bottom of feet and big toes and hips and now in palm of my hand - although palm also feels extremely itchy.

    Hope yours settles down soon

    All the best

    Carol

  • My husband laughs at me as I am always trying to find cold places to put my hands when we are out - have ice pack in freezer at home. When we're out shopping, I go round holding frozen peas or broccoli - whatever veg we're having for tea that night haha 😀. But seriously, it is so annoying and I sympathise with anyone who has this. I will be mentioning it again to my gp. I did ask to be referred to neurologist, but he wasn't in favour.

  • Liesel_12 , I find you can get pain just about anywhere with FM I have a lot of hand and foot pain.Take care. Peck 🐤

  • Hello Fibromygia is pain all over the body Most suffers get it worst in there feet legs and hands

  • Hello Carol, I have had fibromyalgia since 1989 and you most definitely can get pain in you face ,feet and hands, I remember my pain started in my face, head and neck the it spread. Internally and externally.

  • Hi Liesel_12

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

    fmauk.org/

    I am so genuinely sorry to read this, and what you have described could be Fibro but it could also be so many other medical conditions. I have pasted you an excerpt below from the *HealthAdviser cache on this issue:

    *It can occur due to traumatic or non-traumatic inflammation, infection, nerve tumors, and metabolic, toxic or hereditary factors. It can be caused due to pinching of nerves or diabetic neuropathy. When sensory nerves are affected it can cause tingling, prickling and numbness along with burning sensation.

    I have also pasted you a link to the NHS Choices cache on Peripheral neuropathy - Symptoms:

    nhs.uk/Conditions/Fibromyal...

    I (speaking personally) quite often think that once you have a medical label such as Fibro then you get stuck with this and no matter what you present with the medical personnel will always say that everything is Fibro? I would personally be tempted to visit a different GP at your surgery and ascertain their opinion?

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Ken your last paragraph is just absolutely right. Had the same problem

    Myself. I am just not having it. Not everything is fibromyalgia related. Muscles, bones and burning hands and feet. Muscles pain, please correct me belongs to

    Fibromyalgia. Bones, to other illnesses. Burning pain in hands and feet different

    Illness again. Sorry please reply. Enhance my understanding.

  • Hi Dorothee yes, again you are quite right my friend. Burning in hands and feet does indicate Peripheral Neuropathy. Bone pain (especially in joints) is an indicator of illnesses such as arthritis. When I get a very bad muscle pain I do think Fibro first and a pulled muscle later. I think the truly annoying aspect of this is that the medical community are more than aware that Fibro sufferers do tend to have secondary or even third illnesses such as those I have mentioned above!

  • Thank you for your reply. Now onwards the last thing I need to find out is when my body is overheated by bath or weather my body responds with oval swellings with no pain in wrists arms and body. My body cannot stand heat. I have not been able to find a cause or anything that is related. Please can you help me. I was told thirty years ago that. I should watch out for connected tissue disease but cannot find anything that corresponds. I am dreading summer coming.

  • Hi Dorothee

    According to *NetDoctor

    Our peripheral circulation opens up in order to assist heat loss from the body and control temperature, preventing overheating. The loss of salt from the circulation can reduce the ability of the veins to draw blood back in from the tissues, leaving the fluid in the limbs causing them to swell. The process is not helped by the veins being dilated because of the heat.

    I genuinely hope that this helps you my friend/

    All my hopes and dreams for you

    Ken

  • Thank you for your reply. I will look at Net doctor to enable me to know what to do about it all. I am so angry that we have to find out every thing for ourselves. I seem to get only sheet of paper from doctor with illness with no hope of knowledge of how to improve these illnesses. I think I might look at vascular pages. Any hope there????

  • Good luck my friend

  • I also have pain in my face, feet and hands. The burning sensation in my feet and lower legs often keeps me awake at night. I now have a gel filled 'chillow' which I put under my legs at night and this does help. I hope you find some relief soon x

  • Hi there I do get like a skin sensation like burning in my face and pain certainly is everywhere, but like the administrator said you can get everything put down to fibro, and I would definitely see a different GP in your practice as they could be right and it's a flare, but after I spent 6 days a couple of years ago on a cardiac ward to be discharged and told it must be down to fibro, well after using a little thing called Kardia it became clear not fibro but Atrial fibrillation, so not only gp's. To sum up if your not happy keep going back. Hope you feel better soon and if it is a flare it will die back , just be kind to yourself and rest till it passes.

    Take care sue

  • Hi there . Do look up Erythromalagia. Sorry I think spelling is not correct.I think I missed a L

    Somewhere.

  • Thanks all for all your very quick and kind responses. I forgot to mention that this new burning pain is nothing like the fibromyalgia pain and it doesn`t ease with exercise as the fibro pain does. Also about 4 months ago my previous doctor retired and in his wisdom my new doctor took me off all my medication at once with no tapering off. This included 10mg Diazepam, 7.5mg Zopiclone and Clonazepam (can`t remember the dose of this). Within a few weeks this totally new burning pain started. My doctor doesn`t want to know. He just made an appointment at the pain clinic which is over 2 months away. The way I feel I won`t last 2 weeks! I tried to talk to a different doctor at the practice and he said to take paracetamol, which obviously didn`t touch the pain. I wondered if this could be a really bad reaction to suddenly withdrawing from this medication? I have been on it all for about 10 years.

  • Also forgot to mention that i`ve been on NO medication for 4 months since the new doctor took over. To be honest I don`t think he believes Fibromyalgia actually exists. I thought those days were gone.

  • Hi again Liesel_12

    I really am so genuinely sorry to read that you have been left without any medication. I would be tempted to go along to your local ''walk-in centre'' and ascertain what they can do to help you my friend? Good luck.

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