I have only slept between around 2.30am - 5.30am then the pain woke me again !
For over a year now this has been going on - I am getting excruciating pain below & around my knee which radiates mainly down from my thigh into my shin & into my foot , I walk the floors at night with it and end up in the lounge all night with heat packs / ice packs you name it ! Then I’m exhausted
Strangely enough it’s always worse from late afternoon and all through the night !
I’m on oramorph when needed at night for this but getting to the point that it doesn’t dull the pain much at all , I’ve had an MRI on my back again to see if there were any changes which could be causing this but there was not .
I’m at the stage now that I really can not carry on with this anymore- I’m more exhausted than ever with it all now and wondering if anyone else out there has experienced this ?
My GP says there’s nothing more she can do and pain management consultant is at a loss ! It feels so different to my fibromyalgia pain !😩
Thank you xx
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NB2014
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Morning, I have cfs. /Fibro so can relate to aches and pains and finding ways to help without being on pain killers etc all the time. I tend to have as warm bath as I can later in the evening to relax muscles, I’ve tried massaging as best I can for my feet even better if you’ve a partner that can do this for you, before bedtime I use bio freeze gel to rub in. I have codiene from doc but I am not supposed to use this every day, when I do it usually last 2/3,hours. I have seen these foot massaging machines so I am wondering about getting one of them , and wondering if any other members have tried one of them. Another trick is to get some Epsom salts and put your feet in a bowl for a soak. Xx
Normally amazon also boots but check online, I always keep spare of this and does eases somewhat when I’m struggling, I also buy epsom salts when it’s on offer so handy for bath and giving feet a soak. When it’s colder my hot bottles for feet etc, I do find warmth helps me rather than anything cold but we all react differently , yes anything that helps I know where your coming from .
Thank you I will send for some as when it’s so unbearable i will try anything only had few hours sleep all night so I’m now lying on the bed trying to get some more rest .
Hi yes thanks for that , I’m well up on analgesia use / dependency as I was a qualified nurse for 25 years then had to take my ill health retirement 6 years ago !
I only resort to my oramorph when desperate.
I really wouldn’t be taking all this medication if I didn’t need it.
Was really trying to find out if other people suffer this unbearable leg pain.
You’re not the only If that helps at all. It’s been a year and a bit since I’ve started to get severe knee shin pains going down into my feet ( which also swells up my ankles) It always happens around 6pm-7pm Most evenings gradually getting worse and worse- I find nights terrible to cope with- my skin feels hot and very dry and trying to find comfortable from ice packs and freeze gels I also use magnesium oil spray and I see it’s also been mentioned here and also Epsom salt baths. Painkillers don’t seem to work in tablet or gel formula- someone mentioned arnica gel may help but I haven’t tried it yet. I find standing all day on my feet makes things worse for me during the evening and nights so maybe try a foot soak in the afternoon and massage the legs and have this as a regular little routine and see how it goes? Love ❤️😘🌈🌸🌺🙏🏽
You sound exactly like me ! I’m really struggling at the moment so had quite a few replies will definitely get some magnesium spray / oil and the bio freeze . Yes I’m up a lot making cups of tea and trying not to disturb everyone 😩
Hello lovely to hear from you , yes it is always worse if I’ve had a busy day on my feet a lot , I always had a rest/ sleep on an afternoon but not so much recently so going to get back In the habit of doing this & hopefully it may not be as bad on a night time . I dread going to bed now 😩take good care xx
Honestly, I could have written your post. I have almost exactly what you have thigh pain, radiates to side of knee(no knee issues) down the outside of my shin into my foot. My neurologist just ordered MRI of the lower spine and also some xrays and a CT of the abdomen to cover all bases.. He is sending me to the Spine clinic to see what they can do. He believes that a nerve is pinched somewhere in there. I also have terribile arthristis that flares up here and there in that hip on the same side as the leg pain. Like you, I am up at night, just not knowing what to do. Have you tried Lidocaine patches? I put on the top of the thigh, side of the knee and the shin when i really gets bad. And lately, it has been too much. I also have put a wedge under my knees as to take the pressure off of my lower back when I sleep and sometimes that seems to relieve the pain. However, that requires sleeping on your back, and that is not my natural position. Anyway, you might give those several things a try. I am on a boat load of prescription NSAIDS, nortriptyline, baclofen and occassional pain killer when it just gets to be way to much to handle. This is not fibromyalgia, I have that too, this is a much different pain. Perhaps inquire on an MRI. Best of luck. I will be thinking of you in the wee hours of the morning when I am up as well because of it.
Hi Anna thanks so much for replying , I had an MRI last year which hadn’t changed much still have bulging discs lower down but they thought nothing that could be causing pain so severe ! Not had X-ray’s recently or CT ! I was having IV Lidocaine infusions every 6 weeks or so for the past two years at pain management unitHOWEVER my consultant retired in February and the trust decided NOT to continue with them as new consultant doesn’t agree with them 😩 I really feel it is not my fibromyalgia as it’s so different but I’m now feeling I’ve been abandoned as my GPS say it’s beyond their remit !! and pain management has only just started up
Telephone consultation’s with my new consultant!
You sound like you have a good consultant who’s referral for these scans & to spine clinic are all positive moves - where do you live ? I live country Durham and our trust is really collapsing which is so sad 😞
I really wish you well and will you keep in touch & let me know if you get to the bottom of all this terrible pain , love & hugs xx
Try Valium. It works for me at night when I get attacks
Hi thank you for replying to me , it’s so hard to get anything high level or opioids from my GPS .
I did have some diazepam a while back which helped then but they keep saying out of their remit & up to pain clinic which is just starting up again with telephone consults 😩
I have something very similar but it seems to radiate from my hips which also give me tremendous pain at night, as you say the pain is different from the normal fibromyalgia pain. Sleep is a nightmare, I try to lie on my back but naturally roll on to my side, only to be woken with a searing pain that shoots from my hip to my foot, needless to say that’s the end of sleep for a long time
I’m sorry you suffer the same pain too ! Other people have recommended bio gel and magnesium spray which I’m definitely going to try , good luck & hope you get it sorted soon x
Thank you, I haven’t found the magnesium oil to be very effective but I will certainly try the bio gel - and the exercise recommend by Kismetsoul73, we live in hope! Peace and love x
Hello search pirformis muscle on line it could be pinching your siatic nerve. There are stretches that you can do to release it. It takes a little bit but I was having the same problem and now it has gone away with no medications
There is a big difference, my foot and shin pain are almost gone, as well as my thigh pain. I hope this helps you, it really stinks having this pain (if the link doesn't work let me know I am new at trying to share website)
I get it all the time, mornings and night time are the worse, I can hardly put my weight on my feet. If I sit down for 5 minutes, it takes a while for the pain to go away. I struggle with sleep because it hurts, throbbing, stabing , pins and needles you name it... still waiting for a solution xx
Thanks for taking the time to reply to me , it’s so exhausting isn’t it trying to deal with it all !
As a lot of people have commented I’m definitely going to get some bio freeze gel and magnesium spray to try , take care hope your pain improves soon xx
You are very welcome , it's good to know other people who are going through the same and can support each other, hope you can get a solution for your pain xxx
Hi - just wondered if you were on any other medication? I know there is a view that you should reduce any meds, particularly opiates, but I have found that the key is getting the cocktail right and taking consistently. So if it isn't clear what's causing your pain it is worth trying medication for other purposes - a prescription anti-inflammatory (I take etoricoxib generally prescribed for RA, gabapentin which you may be on anyway for fibro/nerve pain) and most recently, and hopefully short term, after an emergency hospital visit, diazepam as a muscle relaxant, which has worked v well in calming spasms down my legs. That's on top of zapain and oramorph (and the hospital doubled my doseage of that too). I am zonked and having to take a week or two off work to manage - can't really think straight. But hope to cut back again after that.
Over the last 18 months - under medical care I've separately cut all the drugs (some together) to check whether they were helping and/or whether they had been causing side effects. They were all having an effect - increase in pain when any one was taken away. The only one causing side effects was my HRT which had been the for an my blood pressure going higher. Though the symptoms stopping it were also awful. So now on a lower dose which works fine for both bp and hot flushes.
My general point is it does take some experimenting to find the right mix - don't let your GP or pain consultant give up!
Hello sorry about your pain, you could have a tight piriformis muscle on inside of your thigh that can be pinching your sciatic nerve. If you look online search pirformis muscle the symptoms of a tight muscle, also stretches that will release it.
Hi thanks so much for that , yes I obviously haven’t got that right ones at the minute have I ?! Since my lidocaine infusions have stopped now six months ago I’m really having a bad time 😞I was a qualified nurse for 26 years and now my life Is really nothing as so much pain and exhaustion!!
The meds I am on : Pregablin 600mgs a day
Venlafaxine 150mg
Candesartan 150mg ( for blood pressure)
Amitryptiline 50mg at night
Oramorph-10mg at night when needed
I have never heard of your Perscription anti inflammatory but wonder if I could ask to try that .
I need to ask for HRT too as having terrible hot flushes.
What is zapain ?
Really hope you get back to work soon & you get used to your new doses so don’t feel as groggy as it’s a worry isn’t it when you feel like that , I only take my strong meds if I know I have to go out to drive !
Very sorry to hear you're feeling so overwhelmed lately! It's hard to feel rested enough as it is with fibro, and it's even more exhausting with a change in pain or a flare up! I don't know what the laws are where you're at, but I'm in the states, and I have a medical marijuana card myself for the chronic pain. I tend to use low dose thc edibles and it helps take the edge off of the pain. If you aren't able to do that, I've found cbd is helpful if you take it on a regular basis, seems to have a positive effect on my body and inflammation. Also, my rheumatologist suspects that I may have small fiber neuropathy or neuropathy of some sort. With our healthcare system here and covid going on, I'm not sure when I'll see a neurologist, but there's a little skin biopsy test that can be done to test for neuropathy. I've done a little research, and it seems like fibro patients are a bit more likely than the average person to have neuropathy! It would make sense why we sometimes get those radiating pains, or when things fluctuate often! Anywho, I hope some of this info is useful! We're a resilient bunch, we got this 😊!!!!
NB2014 I do not have any answer for you but I hope by talking in the group helps you say you can't stand it any longer but come on love we girls are resilient and we always bounce back we have to because we are made of strong grit gentle hugs x
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