Ive not posted in this community before. It’s been suggested to me by a doc that I have fibromyalgia based purely on it not being anything else I think really? I was just handed a print out on my way out explaining what it was! I’m still open to alternative diagnoses.
I do seem to have pain in quite a few of the pressure points (self tested), I have fatigue, brain fog, muscle aches & weakness, but my main trouble is my feet, ankles and legs. Feet either feels like they are on fire/tingling, (usually later evening/night) which is now also in my ankles and sometimes further up both legs. Ankles are also swollen much of the time. But if my feet are not burning they are often freezing cold and go white. Reading some of the other posts here it does look like some have similar symptoms but just wondered if anyone else gets these extremes? And also any tips on easing things down. Walking is becoming so uncomfortable and difficult.
Hoping you are all as well as you can be, and thanks for reading. It’s so comforting coming here as I don’t really have anyone else to talk to who understands.
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Obviously no one can diagnose online and as a general rule fibromyalgia should not be diagnosed until all other conditions have been ruled out. You did not say how long these symptoms had been going on because my first thought was Guillain-Barré syndrome or Raynauds disease. As you GP done a neurological examination especially for diminished deep tendon reflexes? What bloods have been done? Sadly many disorders can present with the symptoms you described and I personally would not except fibromyalgia at this point.
Thank you for taking the time to reply. I’ve had symptoms for several years on and off. I’ve also had lots of blood tests, all of which I’ve been told are normal. Raynaud blood test was negative. Just trying to make sense of it all really, as trying to get anything conclusive from my GP is difficult, that’s if I can get to see him! Thanks again and best wishes
hey, I just wondered if the go had tested for plantar fasciitis? I have this and the pain you are describing fits with what I used to have. I have fibro too, so it’s not always one diagnosis, there could be more than ailment going on
Aahh ok that’s interesting, as yeah I do have plantar fasciitis in one foot, but the pain and hot and cold etc are in both? - I’m working on the plantar- any tips? Thanks so much for taking the time to respond, much appreciated and best wishes.
hmm that’s true I don’t have the hot and cold in my feet but I can never regulate my whole body temp anyway 🤦♀️
My gp was injecting my heels but this was so painful. My chiro recommended Foot Leveller insoles where my feet are scanned and the insoles made to fit my requirements. Since I’ve had these, I don’t get the horrendous pain. They are expensive, the last pair £200, but they last for years and I transfer into all my shoes. Not sure if this is an option for you?
my feet are usually freezing cold to the extent that they often look blue, before fibro my feet were always hot and sweaty, the rest of my body fluctuates and in the summer often overheats very easily. Told it’s all to do with fibro!
Hello and thank you for your reply. Yes weirdly my feet used to be mostly hot and sweaty when younger. Now it’s seems my temperature control is broken? It’s interesting to hear that other seems to have similar issues. Thanks again for sharing your story.
Hello and welcome, has your doctor referred you too a Rheumatologist at all? Some doctors will refer if they cannot make a proper decision themselves.Would be more helpful too get a diagnosis either way x
Hello and Thank you for your reply and welcome. No I’ve not been referred. It’s just been suggested it might be fibromyalgia as all other tests have been normal so no other diagnosis. Thanks again, I may try and get a referral but guess that will probably be a challenge sadly.
mine are the same. Most of my fibro pain is in my feet, ankles & lower legs. Sometimes making it near impossible to walk, which is super frustrating because up until 3 years ago when they started flaring up… I was hiking a lot, doing hot pod yoga 3x a week and swimming. Now the only thing I can do is walk for about 30 minutes, max… whether I do or don’t walk everyday my feet are in agony, especially at night. Feels like an electrical current zapping through them constantly and doesn’t go away. It makes wearing socks or shoes difficult. And they are always freezing cold.
I wish I could make a recommendation but after 3 years of trying just about everything… I’ve found nothing that helps ease the pain and uncomfortableness.
I’m so sorry you also suffer with your feet. I too am struggling to stay on my feet and also exercise. I was also very active before I started getting issues- it’s so difficult because it affects everything you do doesn’t it. I find most shoes uncomfortable as I also have very wide feet which adds to trying to find suitable footwear. Thanks you for sharing, it’s somehow comforting to know I’m not alone but think I should try and get a conclusive diagnosis.
It took me almost 2 years to get my diagnosis from a rheumatologist because he had to test for every other possible cause. Just keep persevering.
It is mentally draining and if you are interested you can self refer yourself for CBT (cognitive behavioural therapy). I did 12 weeks online and my therapist specialised in long term conditions and was amazing at helping me uncover mental & physical stress points in my life and help me find ways to reduce them.
But know that you most definitely aren’t alone. Some days I have a good cry as I miss my life before this… other days I’m mentally good and just try to keep a positive outlook… many other days I’m just too tired and in too much pain to even think about anything.
Thank you so much for your reply. Your description of your days is familiar- I get so frustrated that I can’t do things like I used to, it’s so sad. I think I probably could do with someone to talk to as I’m bottling it all up which I think is making my symptoms even worse? I try not to burden my family and just try to get on with things, but it’s so very hard at times. I may look at the self referal. Thank you for being here, it really does help xx
I started having a problem with lower legs, ankles feet/neuropathy and feeling cold at night, and have tried various things, what has ended up easing the issue is a combination of taking nattokinaise, magnesium taurate, d3, zinc, omega 3, an hour before bed and using a grounding sheet on the bed( skin has to touch it) and a hot water bottle next to my feet, it has not completely cured it but it is a lot more comfortable, and I am sleeping for much longer.
Thank you for your reply and tips, I’m so sorry you too suffer with your feet and legs. I will look into what you suggest as at the moment I have found nothing to ease things, and it just seems to be getting worse sadly. Thanks again, much appreciated
Welcome to this lovely community. There are many members on here who will understand your symptoms. I can only suggest what has worked for me.
I have fibromyalgia and Osteoarthritis in my leg/knee and have trouble walking. I am currently waiting for knee surgery for both legs and to support my Inflammatory condition right now has been .
Stretching exercises while sitting moving your feet will help swollen ankle release water . Do chair exercises there are some very good ones on YouTube.
Drink plenty of water to help you get rid of fluid. It's important you keep walking or moving even if your sitting down doing it.
Take magnesium which helps with muscle function/nervous system reduction of tiredness and fatigue. Take vitamins C and D which should help you.
Research you condition and symptoms. there is so much written about fibromyalgia and many things you can do to support your lifestyle and make changes to help you. Lose weight if you need to this will help with walking.
Look into buying a tens machine for pain they are very good . Rub you feet with warm oils to relax your muscles.
Soak your feet in warm water this will help you move them easily without to much stress. When my feet go cold I rub them till the colour comes back and the muscles relaxed.
Look at wearing good shoes 👞 which support your back and your structure. Look at your energy levels and your lifestyle and your diet. These things can affect your condition.
Listen to podcasts on fibromyalgia they help you understanding the bigger picture of your symptoms.
Ask your GP to be put forward to the pain clinic in your local community. These courses are great and you meet others who understand you and help giving tips about healing your pains.
Look on the website for talking therapist who will help you understand your emotional feelings and frustrations and anxiety you can complete there form on line and they will arrange a call back. It's good to talk and share your feelings.
Hope some of these suggestions might help you to push forward. Good luck .Big hug. Xxx
Thank you so much for your very informative reply. It’s so very kind of you to take the trouble to outline all that works for you, and where else I might find help, I will look into these. I’m really struggling with the emotional side just now, mainly due to my symptoms having such an impact on my life, so it’s so lovely to get these replies as it makes you feel less alone, I really do appreciate it, so thanks again. Big hugs back to you too xx
Your never alone we help each other. I done a few courses now which has changed my lifestyle and mindset. Sharing is healing . You need to push your GP to support you as they do not volunteer this information . you need support to help you understand yourself and your illness. Unfortunately many illness affects every part of your body/ mindset which is key in making you understand your moods and feelings on how to live this way and handled lifestyle changes.
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