Hi, My Fibromyalgia aches & pains seem to be getting worse and with little help from the doctors I've seen, I'm not sure it's worth even asking them for advice! My legs, in particular, are getting worse. It's even worse at night and affects my sleep. Does anyone understand if I say the achey, sharp, throbbing, pain seems to be moving, almost pulsating up and down my legs in different places but often starting above the knee and working downwards. So hard to explain but it's not a constant pain or ache in one spot. To be honest I'm worrying it's something else and it's being ignored, or does it sound quite typical to you all?
Leg pain: Hi, My Fibromyalgia aches... - Fibromyalgia Acti...
Fibromyalgia Action UK
Yes, "moving" pains "are typical" to fibro! Also alleviating one can let another come up. BUT it still needs to be checked by specialist, orthopedists (who won't understand you at all if they see nothing on there scans..) and neurologists (who probably will even if they don't). Also try physio, better osteopathy & similar, all different types of exercises (carefully!), heat & cold. Try finding out what makes it worse. If it's worse at night try topping or changing your mattress... (I'm working on this very diligently, got a list of 20 things that wake me up at night and tricks against them all, getting better all the time.)
Thanks for your reply and the tips. I just wanted reassurance I hadn't got something else that was being ignored along the way. I've not had any scans or seen anyone other than the one consultant who made it plain he didn't consider it necessary to treat and told me it was due to stress. I said whatever it was due to, I was suffering from it! I'd originally gone to my GP and I described the aches and pains as not muscular, but seemingly originating from the bones. That was the only way I could describe it. She sent me for a bone density scan to rule that out. It did. Since then, I've been on my own with it and what with Covid, it's hard to get another appointment, it's all done over the internet or a phone call if I'm lucky, but maybe I should try to see someone again.
Ah, interesting you saying it seems like your bones - I started saying that, but thinking about it, I realized it feels like the muscles/tissue (and tendons). So your seem to be different...
Yes, it doesn't feel like normal tired muscles. It feels deeper but it radiates out too. So hard to be sure what or where.
I have also had the problem of phone call appointments very hard to examine some one over the phone in fact I d call it impossible it's limited to have you tried. a warm bath or a ice pack and so on and when you reply yes they are unable to give you any answers or treatment
"a list of 20 things that wake me up at night and tricks against them all"
Wow. I wish I had it that together. Would you consider sharing your list of things, along with the "tricks"?
Hi No...pain - I'll try to finish my 'essay' on this round about tomorrow... ;-). I'll put it as a new post and put the link here too. It really has been and still is a question of 'having it that together', started off because of wanting to try to slowly get back to work (as from tomorrow) after 10 months...
I get terrible pain in my legs, that move around and definitely worse at night.
Yes that pain I describe like sharp nerve pains I get it in hips legs and arms I think the cold weather is definitely not helping x
I have had similar sensations with my fibro. Some of the sensations you are describing could also be caused by Restless Leg Syndrome which again is something many people with fibro will recognise:_
It's been described as:
tingling, burning, itching or throbbing
a "creepy-crawly" feeling
feeling like fizzy water is inside the blood vessels in the legs
a painful cramping sensation in the legs, particularly in the calves
Sometimes massaging your muscles can help some people find a hot rub js best but I actually find freeze gel better for me. Good luck in finding something that helps.x
Yes sounds like restless legs , I have it and it’s awful especially at night, I find either. Bio freeze or magnesium oil is good rubbed into my muscles helps a lot , take care
Hi rosewine, as you suffer from restless legs too can I ask apart from freeze gel anything else that may help? I'm going to look into magnesium to take I've got a gel but not found any relief. Also do u take amytriptaline? As I do and I looked up that it can be a causer of restless legs so I'm experimenting with reducing my dose but 3weeks in and no improvement 😢
5080F No I don't take amytriptaline as antidepressants always seem to make me ill but people have said it has helped them sleep. I do think many drugs have unwanted side effects but you might need to get it out of your body completely if that is what is causing the restless legs before you get a noticeable difference. People seem to have had more success with the magnesium oil spray as the body seems to absorb it better. I bought some but only found a marginal difference.
If it is bad I get up and have a walk around and massage my muscles with the freeze gel. I have also found that I have been better since we had our rescue dog as she makes sure I have a walk each day. On the days for whatever reason I don't go with my husband for her walk I always find that my restless legs are worse on the nighttime.x
Do you know if you have any varicose veins? Reason i ask is I saw the surgeon (last year i think it was for mine) but he was adamant I shouldn't have as much pain as I have & actually didn't think I had any until he got results from ultra sound.
Mine are quite deep just at or below groin, declined surgery for now as felt if not the cause of pain why put myself through it.
I do wonder though as pain is magnified in fibro bodies🤷
Unfortunately I suffer with the same type of leg, foot and arm type pain... It’s not too bad in the summer but as soon as the weather changes it gets 10 times worse... I’ve invested in some compression leggings and long compression socks and find that really helps. Just ordered some arms ones to see if that makes a difference too. It’s worse in the evenings for me when resting. Worth a try for you?
Would the long socks issued in hospital when I had an op work? I think I kept them! I'll give them a try. Thanks!
Hi kitty love are those the leggings that have compressed air in them? I was thinking of investing in some to see if they worked? One will try anything eh?!
They gave me some lovely American tan compression knee highs 🤮 so bought some flight socks but didn't know you could get arm ones too, can you say where you get them kittylove without getting into trouble?
I have arthritis in knees both damaged but according to rheumatologist only mild..my docs carnt help told me to my face don't know what to do except give co dydramol..bone specialist say fibromyalgia magnifying pain making it chronic and has also sent fluid..so legs go solid do in agony and cannot hardly walk..it has also triggered pain chronic in elbows and hips and face and hands and fingers. So basically I cannot do much..have amytrypline bon a night to try to help me sleep..but doesn't..want me to have cognitive behavioural therapy to try to cope with pain but husband away and I cannot travel 20miles on public transport when I am now sat in agony... basically no help all put down to covid... They don't give a crap...I'm sorry but that's what I've found here in Suffolk UK...
Oh dear! I'm sorry to hear that. CBT seems to be a general suggestion for lots of things. It moves you along to another dept to deal with you!
Another thing I find helps is reading a book or magazine, as I fall asleep trying to concentrate. But not an electronic copy, as apparently they keep you awake. It’s not a solution but may hopefully help distract you from it 🙂
Hi I agree with those who say it's restless legs, I suffer badly from it too and it feels like it is the muscles and bone to me. Drives me mad! Burning hot feet at night too. Was only at night but now getting pains in the day. If I find a solution I will tell you about it! Take care.
Hi, I'm also so troubled with my legs that's thighs, calves and feet. I struggle to walk. I do have varicose veins also. My pain is constant so puzzled extremely difficult to work out as new symptoms keep flooding in!
Loads of fantastic advice here X hope u find something that helps you.
I get this ask doctor for quinine salt tablets they massively help also I bought a leg massage machine off amazon it wraps round like a blood pressure machine and inflates and massages it helps me so much.
Hi I was thinking of getting those leg air compression machines for my restless legs so you found it helped. How often do u use it? And does the air movement start at feet and work up the leg? Sorry for questions but I was thinking if the air just goes in and out it won't feel so good does that make sense?! 🤔
For me this is entirely normal. My leg pain is enormous - thighs, groin, calves and ankles. 24/7!!!! Nothing seems to make it better. I have just bought a memory foam mattress which has helped at night - 600mg Gabapentin, a cocodamol, Amytryptiline, hot bath and fingers crossed I get about 6 hours. Good luck x
Yes I understand I have the same!!! I was diagnosed recently with fibromyalgia but am struggling as scared it maybe something else!!! The aches and pains in my legs are terrible I also have restless leg which drives me crazy!!! I was given Amitriptyline and can now finally get a good nights sleep!! If I sit for just a few mins my legs completist stiffen up and I can hardly move!!!!!
that sounds like me but I am already on Amitriptyline for migraine prevention so it isn't a magic cure for me! It isn't a magic cure for migraines either! However if I try to wean myself off of it, thinking it isn't worth taking it if it doesn't work, my sleep is affected so maybe it's doing more than I realise.
A doctor asked me if my pain moved around, and I thought it was a trick question for a hypochondriac, but when I answered Yes, he said "Yes, that's fibromyalgia".
I seem to remember it was the GP (now moved away) who diagnosed me.
I was referred to a pain management clinic. To be honest I gave up asking for help. That was 3yrs ago so maybe, now it's worse, it might be worth asking again in case they have a different view of it. But of course Covid has restricted appointments, so maybe I should continue to self help!
This sounds very familiar, except for me it’s the tops of my thighs starting at the hip area. Pulsing is exactly the word I use too. It’s horrible. I assume it’s nerve signals or something shooting all over the place
Oh mine is there too. But the worst is above the knees down. I can't actually think of a part of me that is ache or pain free!
I feel like I have done intense work out. My hands hurt I much too. Does anyone get the tight fingers.
In any position for a few mins and it's hard to move my fingers. They seem to lock in position and it's a conscious effort to release them.
I have read all posts that have replied to you and have to say they can all be right.
I have recently been diagnosed with sacroiliitis and i get the same shooting radiating pains up and down my legs. This is to do with in the sacrum and bottom of spine. It is very hard to diagnose this apparently but i had lot of MRIs before it was diagnosed.
Can i ask do you had tender spots in your buttocks, bottom of spine and hips and it wakes me up every night always early hours.
Just check into this condition to see if you get these symtoms as it may help if you see a doctor and suggest it.
Hope this may help or not but worth a try.
Good luck and stay well.
Hi, I think I know what sort of shooting pains you mean as I have had a back problem for years and suffered excruciating pain shooting down from buttocks to feet and, after trying all sorts of treatment including physio, osteopaths & chiropractors, as well as pain relief, which didn't work. The painful spasms were only cured, after 7yrs of suffering and asking for help, when I finally had an MRi scan and then had a laminectomy on L3 back in 2010. They had to scrape away some of the inner bone of my spine, to give my spinal column more room to stop the spasms. I still get daily pain from the base of my spine but not the awful spasms. My current pain that I was asking about, is nothing like that: it's a constant achy sort of pain, rather than stabbing, that starts in different spots and radiates from that point, moving up or down, almost pulsing. Yes, I have those tender spots you mention as well as the typical Fibromyalgia tender spots. I do hope you are now receiving the treatment you need to reduce your pain.
Thanks for reply.
Don't like the sound of procedure you had on your back sounds painful.
At least my issue is different as now have to use a walking stick permanently and cannot walk for more than a minute without having pain in spine, groin, buttocks and leg it is agony so very glad for you it is different.
Unfortunately i still have not heard back.
I am very lucky to have a wonderful husband that is always there to help me, he has to lift me out of bath now as right leg is a mess so cannot lift it up very far.
Sorry i could not help you but every bit of advice is worth checking out if it helps us in some way.
First of all, PurpleRoni, please know I empathize with your condition and wish I had answers. Your concern for "something else" hiding under this umbrella of fibro is legitimate...I know we get written off at times because docs can easily lump everything we highlight within our symptoms.
I completely get your assessment of legs, sleep, and fibro pain aggravation. (You'd think we'd at least feel better sitting down, but nada). I could have composed your questions myself. Wow. It is difficult to find a rhematologist here (midwest USA), much less one that is making an educated effort to double-down on fibromyalgia symptoms and relief. On the bright side, I am beginning physical therapy Wednesday. I've been through everything else. Fingers crossed for all of us. I will certainly shout out if I have results. Best to you...
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