This is a new thing for me… I’ve had fibromyalgia for years but started with a pain the outside of my right thigh - originally smaller than my palm (it’s now much larger) I’ve had a cortisone injection which did nothing. I’ve tried naproxen.
Today the pain is starting in the other leg. It’s affecting how much I can actually walk . I’m going to end up in a wheelchair at this rate. I feel totally helpless.
I know about restless legs I get that too.
This feels frozen and tingly.
I take gabapentin, amitriptyline, carbamazepine
Mirtazapine cocodamol
When I go to the doctors they always say there’s nothing else they can give me as it will affect my other medication.
I can’t go on living like this. It’s taking control of my life!
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Hya Cookie do you take gabapentin, amitriptyline, carbamazepine, cocodamol all for pain? I haven't read your profile so apologise if the info is in a previous post.
gosh thats quite a lot for your body to contend with. I don't tolerate anything apart from small amount of diazepam which was give to me years ago for severe back spasms and its still the only plainest meds I can take but only use it as and when otherwise I have to grit my teeth which hasn't helped my jaw.! I was diagnosed decades ago it seems with CFS, Chronic Fatigue, etc. I seemed to remit and relapse but now no remitting. Started with left side weakness now its all over but my latest symptom similar to your I think. Sensation (not pins and needles) right hip area, numbness. Can't lie on it in bed and the sensation goes down my leg and sometimes my toes go hot. Have to move onto my back. Left hip thigh area too painful to sleep on. Drives me crackers. Oh dear! At least the sun came out briefly this morning. Wishing you well.
Hi Cookie. I too have had Fibro for years and for the past couple of days had pain and numb feeling in my outer thigh. Seems to be in a major flare since the weather changed.I also have pain in hips and bladder and been told it's a tight pelvic floor trapping a nerve.
Had this before a couple of years ago and was told Meralgia paresthetica so now I'm confused and it's affecting my mobility a lot so I know how you feel.
Sorry I can't be more helpful but it seems there's not much help given to Fibromyalgia sufferers in the UK apart from medication.
Could I suggest that you go to your GP and ask them to do certain blood tests that could well solve the issue for you if you haven't had these done recently.The tests which could help include kidney function ( sodium /potassium), full blood count , Ferritin , Folates , Vitamin B 12 , Magnesium and Vitamin D.
Basically , what you could be describing is Parathesia, which sounds bad but is actually a type of numbness in the nerves within the muscle which is often made worse when you are walking or on your feet.
The above tests help you to rule out common causes for this type of thigh or upper arm numbness , which are various types of vitamin or mineral deficiencies. It's particularly common with Vitamin B 12 or Folate deficiency which can also cause low Vitamin D and Anaemia ( two other issues which also cause upper leg and arm numbness in activity).
Even if you aren't deficient in Vitamin B 12 or Folates but your results are very low or borderline you can get the symptoms of these deficiencies which also cause added Pain and Fatigue , increased Brain Fog , dizziness, palpitations, chest pain , poor temperature control and digestion, poor absorption of other nutrients and medications and loss of feeling in the muscles of the arms and legs especially during activity to name just a few.
These nutrient deficiencies can be solved quite easily and your symptoms can be turned around with vitamin supplements, usually starting with oral supplements, but after retesting injections can be given.
I have both Vitamin B 12 and Folate Deficiency and I spent years with that symptom of and on and then months in far more pain and with thigh numbness everyday until it was discovered and treated. After treatment began though I could finally feel my legs again when I walked.
Salt imbalances like Sodium , Potassium and Magnesium are also common causes for nerve numbness , tingling , throbbing and fatigue. And again supplements and changes in diet can also bring a reversal of their effect on your symptoms or nerve and muscle issues they cause if your blood results find these are two high or low.
Vitamin D deficiency is also another common factor especially if you feel you are also suffering increased stiffness and pain in the joints and again a supplement can reverse these issues too.
Finally , keep an eye on your water intake , as this can cause salt imbalance and lack of good nerve function especially in hot weather . Your body can be dehydrated even if you are not thirsty.
Take it from someone whose had these muscle and pain issues from low nutrient off and on for decades , making my Fibro and other health issues worse it is definitely worth requesting to have these blood tests for causes which are often overlooked by the GP as it's better to rule these out , or if they are responsible the solution is quite easy , take care , Bee
All recent bloods come back normal/borderline and were nothing to worry about… she did mention adding vit d and magnesium which to be honest I’d totally forgot about. I’ll start them today and monitor over next month. Thank you
Did you have B vitamins tested in those tests ? If you aren't on Vitamin B 12 and Folates it's a good idea to start them now too.
Carbamezipine does deplete B 12 levels as it can effect vitamin absorption then the lower levels effect how much of your dose you absorb like a horrible vicious circle.
If you are taking Vitamin D , Better You has an good oral spray with an adequate dose which is much easier to absorb . Take it after the fattiest meal you have each day for maximum absorption, usually your evening meal this is a good time to take your multivitamin and an Omega 3 supplement as well.
Take Magnesium at night with a small snack or milky drink as part of the beginning of your bedtime routine, It means the highest dose is in your system and working when you are most likely to have night time symptoms like peripheral neuropathy, restless legs , burning or tingling joints and problems with temperature,
If you take B 12 it is better to take it separately after a meal with no or little Vitamin C in it. It is quite handy to take this at lunch or with a mid morning snack to take advantage of the boost to your energy .
Take Folates / other B vitamins and Iron after a breakfast or a meal with Vitamin C as this helps boost how much Folate and iron you absorb . If you are not on medications that are effected by these supplements , Garlic and Pure Turmeric can also be helpful to improve circulation , joint pain , and digestive issues like IBS and it's good to take these either at breakfast or with your evening meal.
You may already know all of this but I thought I'd include it in the replies in case there of other people reading the post that don't have this information and might find it helpful as well , hope things improve, Bee
My thighs and groin are agony and I can barely walk. I cannot sleep through the pain so am constantly exhausted. Rheumatologist has referred me to Pain Management Clinic for possible injections and put me on Pregabalin (Lyrica). Who knows if this might work but not holding out much hope.
Thigh pain and groin pain is what I have and I know I have a pelvis that is unstable and a herniated disc. I feel woman get diagnosed with fibromyalgia when we have MSK problems! Ask for an MRI….
I have had a MRI and have Ankylosing Spondylitis and sacroiliac joint disease. Compressed nerves, narrowed spinal canal and bulging discs. Guess I'm done for really!!
Ah, well yes I am not suprised you have pain. I am the same as you. I have started to use the app called ‘SpoonieDay’ and it makes you look at your activity. It is so visual and easy to use and you can plan your day according to how many spoons you have left. Take a look as no amount of medication takes away all pain unfortunately, we have to manage it through activity aswell. I hear you ans your pain though. I send healing light your way.x
Hi it may be possible that the pain is bursitis I get it alot and I can't walk without aid. I have the same numbing and tingling and burning sensations in my thighs too. Just a suggestion. I have fibro and spondylitis x
Hi Cookie, don’t know if this helps but I suffer with something similar, it’s called Meralgia Paresthetica, I got this in my right thigh after a hip replacement surgery on my left, it’s caused by a pinched or trapped nerve in the pelvis. I hope you manage to get this sorted I know it’s incredibly painful and limiting.
maybe it’s not your fibromyalgia causing your hip pain I had an X-ray and found out I have calcification in my hip causing tendonitis and it’s in my shoulders too ,maybe ask your doc for an x ray ?
Hi cookie, I know this pain type (or numbness & tingling) well and for me there are 2 things that cause/drive it. One is sciatic caused by my lumbar & sacrum and the other is generalised fibromyalgia muscle & flesh tightness which is worse when I’m over exhausted & running on energy credit as I call it, using energy I simply don’t have.
I hope you find something in this of interest/use to you.
hi Cookie I had this for a few years my legs got really weak you can self refer to physio therapy tell them your issue and you will get exercises I also joined a gym but it was too much too soon slowly with physio the pain in my thigh and numbness has gone. Can I also suggest you see you doctor just in case it is something else as certain conditions can give similar symptoms. I wish you well. Take care of yourself.
Hi, I have fibro too and the same symptoms started for me a few years ago, getting progressively worse. The dr sent me to physio a few weeks back; the physio says I have Greater trochanteric pain syndrome . It started as a numb spot on the right, then an aching pain in the buttocks where it feels like there are tight strings going down the back of my upper legs , and pain which goes down the leg to the foot kind of like sciatica. I began to have horrendous painful spasms. The physio has given me some exercises, he's aware of the fibro and that I cannot exercise as well as other people. There seems to be some improvement but I have many more sessions to come. I am only on 20 mg amitriptyline as I have lots of other meds and I have liver issues so have tried to suffer through.
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