Hi there does anybody else suffer with very painful, constant dull aching, sore legs In the thighs, behind knees, calfs and feet?
I've had fibro for a few years now and leg pain has suddenly came with it too this year but daily..
Just wondering if anyone else gets this too. Thank you 😊 🤗
Yes - I get it in my ankles and feet particularly and in my hip joints. It’s worse at night. I just put it down to restless leg syndrome, so I take iron supplements and they do seem to help. I also used to use a magnesium cream when it was really bad.
It’s weird, I didn’t really think about it being a fibro thing, but it makes so much sense! I only had the diagnosis in the last couple of months. I also don’t think about the specific areas of pain - it feels like I’m just one big ache 😅 but when I read these posts, I start to separate the different pains.
I do love having this forum to share with others and feel less alone in all this 💙
That's how I feel too 🤣 one big ache it's just every part of the body isn't it ! So deliberating though. Me too, i didn't think it was a fibro thing until the doctors just said it'll be the fibromyalgia aww I hope you feel some relief soon me you both x
Yeah. One big blob of ache 😀Great that we have a community where we can share fobro jokes. No one else would get these jokes
😆
Yes I also have pain in my legs .I have spent so much money on footwear as my feet give me the most pain and feel at times I am walking on hot coals especially at night.
I decided to just shop at Hotter these days - very comfortable and some good styles
Yes, that’s exactly what mine feel like. I sometimes look at them expecting them to be the size of tree trunks, but there is no visual change. The longer I spend on my feet in the day, the worse they are. My feet also feel like they have been plunged into scalding water. Even when cold to the touch, inside they are burning. Big gentle hugs x
Thats a good way of explaining it! 'Tree trunks' 🤣 do you have the pain all the time aswell I have found that nothing helps but I have tried the glucosamine/devil's claw cream which subsides the pain to a certain extent but then its instantly back again oh and a nice hot bath soothes it too but as soon as I'm back out its there all over again! X sending you hugs and lots of hope you will feel better soon x
I'm still not diagnosed. When explaining my symptoms to the GP they think it's all in my head and they just tell me to relax. I have pain in my neck, shoulders, back hips, knees, ankles, wrists & fingers. Most muscles and most joints are affected. When it's really bad my fingers swell up. I have hot electric shocks in my feet, toes and fingers also. Sleeping is becoming more of an issue even though I'm on Mirtazapine and I'm extremely tired all the time. I've spoken to umpteen doctors, had repeated blood tests. Don't know what to do next apart from changing surgeries.
Oh that's awful! I do feel your pain! At first getting a diagnosis was hard for me too I was going to the doctors for weeks on end/months infant with all the pains - pointing where they are and so on it was tiring in its self and I didn't feel listened to half of the time until one day I seen another doctor in the same surgery to which he did all the blood tests possible which were always clear then he asked me of I'd heard of fibromyalgia before to which I said no he said i think you may have that (he explained what is was etc) so he reffered me to a rheumatologist to first rule out heart and all other things, I had a ct scan which showed good and a xray of my chest which was also good. To which because all my results were OK the rheumatologist then gave me the diagnosis after asking me where all my pains are how I feel like tiredness etc... I think because your GPs ain't helping you you could now ring them up asking for a referral to see a rheumatologist who then can hopefully help with diagnosing you x sending you much luck and hope you will be on the right track soon x
I'm sorry, that is awful. It took years for me to be diagnosed I only found out last year. I've been in pain for so long and have other issues that it mask everything and slowly they sort them out one by one. Have you asked you doctor if you can see a arthritic doctor as it seems to me that they have the best understanding of all of this. And GP's just like giving you painkillers and antidepressants. But now you know that your not alone and people on here are with you .
How insulting! Why do some doctors tell us 'it's all in our heads'That was the same as ME, now they know better. If you can change doctors, it's worth a try.
I was given mirtazapine for depression years ago... I hated them... made me feel sluggish with a thick head, and I found I was always hungry. Looked them up and found they were originally used as an appetite stimulant...so . stopped taking them.. If you find you're putting on weight that'll be why. xx
Hiya
So sorry you’re not being taken seriously. I know that blood tests are just to rule other things out, so they shouldn’t be so dismissive of everything is coming back fine!
Do you see a pain management team? When my GP ran out of options, they referred me to the pain management clinic, which is a bit of an annoyance (as with any nhs thing), as they bombard you with appointments, but one of their consultants diagnoses me with fibro. I understand that it’s typically pain management or rheumatology consultants who diagnose the condition - they do a touch test on (I think) 11 areas of the body and if you experience pain in a certain number of them, they can diagnose it. I obviously don’t know the official procedure, but that’s how I understand it 😅
So I would suggest getting your GP to refer you to pain clinic and rheumatology. If they don’t, then definitely change surgery and if you just want to change, go for it! You’re the patient and you deserve to be listened to and taken seriously. They don’t know everything, no matter how much they like to pretend they do.
Good luck 💙
I’d turn up at A/E telling them you can’t take the pain anymore. You will then get to see a rheumatologist or a skeletal orthopaedic. They can’t discharge you to suffer in pain without doing routine tests to determine the cause. Even if the tests are offered as an outpatient service you’ll be under the care of the hospital. My GP had to refer me to see a rheumatologist for my diagnosis, but if I needed to be diagnosed now, my GP is still doing telephone/Skype consultations and due to the massive backlog that covid caused, has put referrals on hold unless for emergency and life threatening symptoms such as cancer.Has your GP got you on any pain relief medication and/or other meds usually given for fibromyalgia symptoms?
Best of luck hun, hope you get the result you want hun,
Yup, mainly in the right thigh, but it pops up elsewhere too. It feels as if it's deep, located in the centre of the muscle. It's worse when I wake in the morning but haven't found anything else that seems to trigger it
Yes i agree it's a deep pain and deffinately feels as though it's muscles. I am the same I haven't found anything that triggers it but my leg pains are there more often than any pain I'd say all the time (no day without pain ever) I suffer very badly with central chest and when my flare ups happen it's all over my body but my chest is the worst its that bad it sends me to A n E no matter how much I try telling myself it's not heart related. The leg pain though.. because its new it's quite worrying. Does your pain go away after the morning or do you have it all throughout the day? Thank you for replying to me x
It doesn't go away but most of the time it eases up. It can come back without warning though, part of the frustration is that it is so unpredictable
Yes it's that exsactly ! It can ease but never actually goes x wish you well x
I have had this since forever to different degrees. Mainly quads, hamstrings and calfs. In general bigger the muscle, more pain for me. I used to be runner, so have embraced the leg pain without much bother, apart from times when it gets extreme and I start googling self-amputation.
Sorry to end on depressive note.
😑
Nono thays what I end up doing and then I send myself into panic I've had to tell myself not to google anymore 😅 but it doesn't help when nothing helps with the pain and the doctors tell you they don't know enough or there isn't much that works for fibromyalgia aswell x
But for me stretching exercises help more than anything. Daily minimum stretching exercises of 10 min. No matter what. Well I say that, but I skip a few.
I've found an app that helps me get through this boring routine.
Is it during your exercise your pain eqses and then are you back to normal again and in pain after or does it help you for the rest of the day x what app do you use if you don't mind me asking please x
Sorry if I didn't phrase it right It is not so much during that I see benefit. Right after I do notice muscles are more relaxed. But it is more longterm effect as a result of regular stretching that I noticed the pain is mangable to the point that i am able to focus elsewhere. Like taking a long term medicine that works well taken daily. The key is in maintaining the routine even if you start with a few min.
If I restart exercises after a long break then my muscles feel more tired for a few days but I usually push through the pain for the benefit on the other side of it. A
The app is called 'Stretching Exercises - Flexibility' in Android app store. I tried putting image in a post but they violated advertising guidelines. But it is 4.8/5 rated and red/black colour theme.
Just when you think life is going to get better something else comes along and smacks you in the teeth!!! Read a post the other day which said, when they had covid, the fibro pain stopped....until they got better. Odd that?
Yup most of my fibro pain is in my legs, particularly thigh and calves as you say.
I really feel for us all suffering as we are it's so unfair especially when there is nothing much that helps woth the pain painkiller wise. Saying that though the doctor gave me a weeks worth of zopiclone for sleep when I had a flare up which led to not able to sleep for 4 days and I'd noticed all my pains had disappeared.. also waking up I felt more refreshed due to no pain.. but by late morning it was all back again so they helped me and I have even argued that with my doctor but unfortunately it's not something they can prescribe for long term! Otherwise nothing else works though. I wish you get some relief from it soon because the leg pain is so bad. I've found it hurts more when I am laid up or standing still and sitting .. I feel the pain a bit less when moving them x
Iam the same ,the calfs on my legs are sore 24/7 even to touch
Had it for years on and off. My hips, especially the front of my thighs, all the way down to my ankles. It literally feels like I have have just run a marathon, that terrible ache like too much lactic acid. Just an intense constant ache. Even putting my feet up doesn’t help. I have been doing exercises for spinal stenosis recently. Pelvic tilt, bridges with leg lifts, squatting onto a chair with back straight, bicycle legs but parallel to the floor, not up in the air and lying on the floor and turning both knees to the side and then the other. All whilst tilting the pelvis. This has surprisingly helped this pain too. I also used magnesium spray last time I had like pain and this seemed to help it too.
I feel you totally! Thank you for replying 😊 I will give the magnesium spray a try. I find it most deliberating while sitting still, standing still, laying down. Otherwise walking about I don't feel the pain as much, it doesn't go but it eases it alot x I hope you feel better soon x
My fibro was always in my top left body but the last six months it has discovered my left knee and right thigh - yay
I now spray magnesium oil onto my legs before bed for the pain/restlessness. I'm taking piriton at night for the tree allergies which also helps me sleep. A glass of tonic water during the day also for the nightly restlessness. Plus, I'm using an exercise cycle for about 20 minutes each day after I walk my dog which has also helped - I started at 5 minutes by the way. Fibro sure is cr#p! ps. My right eyelid has been twitching for about a week now - great. Just waiting for the day when I wake up and my body has completely fallen apart; like a dolly who's been played with too roughly!!!! Take care
Oh yes I have had fibromyalgia since I was 11 years old .I have pain all down my leg back front knee and it hurts really bad the min I go to bed ,it’s excruciatingly.I also have restless leg syndrome which can and does turn into whole body restless legs .Like Penelope says I’m one big ache,I have tennis and golfers elbow carpal tunnel need I go on 🤣 I keep falling my face at this very moment is black and blue .💕
That's blumming awful have you got someone to help with your falls ?! I have the same I have other problems aswell as the fibromyalgia I so wish we could all just go back to the time we were all OK before this. The main thing that gets me down about it is the fact it's life long aswell and we're living through everyday as much as we can. We are strong people 💪 x
Yes we are strong ,I’m going through a really bad time at the moment .Get a hobby it’s been my saving Grace honestly,it’s something to focus on .It’s hard this path we walk on but honestly you can do it I have done it for many many years .So try not to make it all you focus on daily ,get a hobby something you enjoy .If you need help I’m here .Take care sweetie .💕💕
God yes do I ever 24/7😂😂
It's horrific isn't it, I'm the same it NEVER goes!.. all day everyday. I feel it less when I am being active walking around otherwise standing still, sitting down, laying down it is deliberating! What I do try to do at night time is cover my legs in a cream called glucosamine it's got devil's claw etc in it. It does seem to ease the pains for around an hour but I think that's because of how cool/minty it feels on the skin so it overpowers the aches/soreness because of how strong the feeling of the cream is but it does help me to actually fall asleep. Worth a try ! 🤗 I hope you can find some relief... though there is not much out there😔 😬.. take care x
I do. My under feet, knees, wrists, back, shoulders. Fibromyalgia is horrible 😢. Sending love x
Hi...don't know if yours is anything like mine, but it sounds like it..Mine started after I hurt my neck.....apart from the constant neck, shoulders and arms pain. I've had the leg muscles pain since the very beginning.. glutes,groin, knees, especially behind the knees.
It's constant, so much so I can no longer crouch down as I used to and struggle to bend over to pick something off the floor. I always used to crouch to do my gardening, deadheading etc but now if I can get down on my knees, I've a job to get back up again...!!
It's the same as having a bath, painful to get in and out. It's changed my life completely. I try to do stretching exercises daily, it helps a bit, until I sit down then I stiffen up again!! .
I've upped magnesium and cq10, also take b vits, cod liver oil and flax seed oil... apart from that I just try to manage what I can and not over do it as I get get payback the next day.
p.s. I tried magnesium oil but found it made my skin itchy. Take care xx
We're all suffering so much with this it's unfair 😔 but like you say we have to pull through and manage as much as we can. Atleast we can tell ourselves how strong we actually are to have to live with this daily. 💪 wish you well 💜
Hi Sas... Have you tried having a banana before you go to bed? They've iron and magnesium and are supposed to help sleep and restless legs.? might be worth a try..If someone could come up with something for the brain fog, that would be great... I sometimes think I'm going senile! At least the sun is shining at the mo. Take care xx
I have this too. It was mainly in my shoulders, neck and upper arms. I have restless legs too.
Yes me too, I didn’t realise that so many of us had leg pain, added to restless legs it’s a nightmare 😳
Yes, I've had fibro for well over 20 years now, and over the past month or two have developed constant pain in the back of my right leg, mainly back of knee and thigh. It's a bummer but it's one of those things, it'll probably move to somewhere else shortly 🤷
Yes I also have it in my buttocks. This started after my first jab and appears to be getting worse.
Yes. The pain started in my ankles 2yrs ago and I did not worry too much. However, my legs are now so bad that I cannot bear to wear trousers not even pyjamas. I fear clothing on my legs so much that I am virtually HouseBound, wearing a kilt style towel everyday... I dread opening the door, I dread going out onto the front porch. As the nights are still descending quite early I can pop about the front once it gets dark- the bins, any deliveries to bring in and one of my hedgehog Feeding Stations to tend to.... this is not living. I feel for you. I feel for everyone who is trying their best despite unbearable (and invisible!) PAIN. I take ibufrofen with paracetomol but do not know if they really do very much, just need something that may possibly help me. Live alone. Afraid. Getting worse. Chin up, stoic upper lip, cultivate that cheerful despair and find ways of adapting love. Good Luck!
Yes, and it gets worse as the day goes on, it doesn’t matter if I have been resting or not. I fidget a lot because of the pain. Foot tapping is a distraction technique but it drives people around me crazy. I haven’t found a way to successfully ease the leg pain yet unfortunately. 😕 I hope you find a way tie add yours 😀
Nope I haven't I have found the same solution to you though I have to either keep my legs moving for instance walking or tapping, crouching my legs to ease the pains otherwise it is always always there, constant and so very painful! Mine feels like a deep ache makes me think it's nerves or bone 😣 I hope you find something that helps tale it all away completely! .. maybe one day x take care x
Yes, awful. On heels, capves, hips, buttocks. Worse after sitting still for even a short while.
Hi
I have this too, I was originally diagnosed with fibromyalgia in 2001, I got tired very easily, ached alot etc, sensitive to touch in various places etc but a few years ago it kicked in in my legs and feet, my legs feel like I'm trudging through concrete all the time, they're sooo heavy, they throb, ache, knee joints hurt and grind and my ankles and feet are really painful too, it isn't even just walking causes the pain merely standing still in painful and my feet burn, ankles ache and I can't even bear the weight of shoes some days. I'm just really struggling to be on my legs fullstop and it doesn't get better at night time even the weight of my duvet on them hurts.😩
Oh My Goodness! The pain I get in my thighs, calfs, feet, back, ankles and hips is excruciating. It is ALOT worse in the evening. Let's not forget the painful hands and dropping things.
Oh Goodness Me!! I'm 28 aswell. I get BAD pains in my hips, lower back and all the way down including my feet. I can be sitting there doing nothing and I am really aching!!!
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