painful leg spasms: Please does anyone... - Fibromyalgia Acti...

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painful leg spasms

stelamah profile image
21 Replies

Please does anyone have any answers or cures for extremely painful night time leg spasms. Have tried everything from years of quinine (now withdrawn), Vit D and Calcium supplements, Magnesium supplements, muscle stretching excercises, taking real salt rather than salt replacements and raising the bed. Am getting really desperate for a nights sleep and these spasms are seriously affecting my quality of life. The next day my legs feel as though they have undergone a sustained attack from a cricket bat. Doctors no help whatsoever and these spasms starting to happen in the evening and daytime. is lower leg amputation the only answer? Sue LD

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stelamah profile image
stelamah
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21 Replies
jacksie profile image
jacksie

hey calm down,amputation , drastic don't you think.i used to get that really bad,i felt like someone had run and took a great kick at my calf muscle,to the point of hardly being able to walk.The doctor first put me on amtrip then gabapenton,i don't have cramp anymore touch wood.I think what they do is calm your body down.My body now feels elasticated,mad i know ,but that's the way i can describe it.not much help am i ,love jacksiex.

stelamah profile image
stelamah in reply to jacksie

sorry amputation bit was an attempt at humouring a desperate situation. Have tried amytryptilline but totally unsuitable as is gabapentin. Due to a gastric bleed a few years ago i cannot take any anti-inflammatory medication like Ibuprofen, voltarol etc. As with other FM sufferers IBS is par for the course and medication like gabapentin or its equivalents have low tolerance levels.

I think amputation sounds good to me it's not nice is it

I think you should have Tourette's like I do and every time your

Legs twitchi shout out a bad word, it does not

Take the pain away but it makes me and my husband

Laugh

Other than I don't know it's the pits

stelamah profile image
stelamah in reply to

oh believe me Vivien the air is very blue with every leap out of bed. Surprised myself and hubby by my gutter speak!!!

Ozzygirl64 profile image
Ozzygirl64

Yes I get them all the time. I was on Quinine and as you say that has been withdrawn due to dangerous side effects. So my GP upped my Amitriptyline and that is not working either. The only relief I had was fromthe Quinine. But I get them in the toes, as I try to rub the toes I get it in the calf muscles and as I try to rub the calf muscles I get it in the big muscle at the back of the thigh. It is like me doing a one legged hopping race in our house. Extremely painful as we all know. But I also get it in my ribs too, and I think that is worse than in the legs, for me that is. So what I do now is have a warm bath before bed with Radox muscle soak and I have a small glass of tonic water(every three days) which of course contains quinine. The use of it in tonic water as yet has not been banned. The only medical use for it now is for Malaria and it is dangerous to use for leg cramps, hence being banned. Some people react in different ways to it. For me it was taken off me as it can cause visual problems and I am already losing my sight. But people hear that tonic water contains quinine, exactly the same as the drug and drink that instead. Some people have drunk too much and caused problems they may well have if they took the tablet form. I am not saying anyone should go off and drink tonic water, and I do not condone it. But for me the cramps were so severe that I could not function at all, hubby would just sit and watch my muscles doing their own thing while I was writhing in pain, not much else he could do. I drink about 50ml once every three days and I am not advocating it at all so I do not want anyone running off to try it and blaming me lol. I know people have it in a gin and tonic or a vodka and tonic. I do not get total relief for all of the time xxxxx

Angeldancea812 profile image
Angeldancea812 in reply to Ozzygirl64

It's also in bitter lemon, which I personally prefer. I get cramps in my fore arms which hurts and rubbing the muscles there is a bit difficult due to all the bones.

My knees used to do a dance when I got into bed which my husband and I quite enjoyed watching/feeling.

Ozzygirl64 profile image
Ozzygirl64 in reply to Angeldancea812

I am not overkeen on bitter lemon. And I do know what you mean about leg dancing lol xxxxx

Angeldancea812 profile image
Angeldancea812 in reply to Ozzygirl64

I prefer bitter lemon. I used to drink it when I lived with my gran when I was little. My knee bone used to jiggle about on its own with me lying completely still. It was a really weird sensation but definitely happening.

Ozzygirl64 profile image
Ozzygirl64 in reply to Angeldancea812

At least you know it is happening and can see and feel it. If you could not see it it would drive you nuts lol xxxxxx

Angeldancea812 profile image
Angeldancea812 in reply to Ozzygirl64

That's true but it was really weird and unexplainable.

Ozzygirl64 profile image
Ozzygirl64 in reply to Angeldancea812

I get this so often I think I have gotten used to, my normal thoughts are 'here we go again'. But normally when it starts in one spot it spread through my whole body and I have no control of it. I resemble a puppet on a string when it gets so bad, it is like having a fit but being fuly aware, being able to see and hear, but not speak or stop it happening xxxxx

Angeldancea812 profile image
Angeldancea812 in reply to Ozzygirl64

Tell me about it. My worst thing is my Essential Tremor - what a stupid name - essential for who, what? In my worst moments I have to stop and concentrate to make them stop.

Ozzygirl64 profile image
Ozzygirl64 in reply to Angeldancea812

I get those a lot especially when I am trying to do things. I find that sometimes I do not actually notice them when no one is a round. But even stopping to concentrate does not stop them. Well now I am going to make a nice milky drink and take myself to bed xxxxx

Cat53 profile image
Cat53

Don't know if it's the same sort of thing but my husband is an amputee ( don't worry not upset by the amputation comment) and he has had spasms in his stump. I treat him with Bowen and it can stop the spasms almost immediately.

stelamah profile image
stelamah in reply to Cat53

Thank you for your reply it is much appreciated. Yes i even told my doctor that i often felt lower leg amputation would be the only relief from this distressing condition. Sleep deprivation and trying to carry out a job and every day life can really cloud your judgement. It really has been going on for years. What is Bowen and where can i get it? is it prescription only? So sorry to hear about your husband, pretty sure he'd tolerate leg spasms if he could have his leg back. Am desperate for at least half a nights sleep as is my poor husband! Thank you again for your answer.

Cat53 profile image
Cat53

Bowen is a holistic therapy. It uses a very gentle rolling technique over specific muscles, muscle groups, tendons and nerve endings. There is no deep tissue massage, the therapist provides a nudge to the body to do it's own healing. Bowen is not available on the NHS at least not in my area. To find a therapist you can look on the BTPA ( Bowen therapists professional association) or the European College of Bowen Studies website. If you have problems come back to me and I will see if I can find you a therapist through my contacts. It's worth seeing if there is a student requiring case histories, cos then you can get treatments for donations only.

stelamah profile image
stelamah in reply to Cat53

thank you Cat53 i will speak to my doctor and see if this is available in our area. Your answer is very useful, thank you so much

grumpyoldwoman profile image
grumpyoldwoman

Hi stelamah

I also suffer with spasms and restless legs in bed. Sometimes its like being run over by a truck and I also get electric shocks in my buttocks lol,

Suffering very badly with spasm on inside of of left ankle esp when straightening my leg at the mo.

My doctor prescribed Gabapentin-its an epilepsy drug but is also used for chronic pain.

I have found after a month of taking it my legs are not as bad so may be worth you asking your doctor if they could try it with you. I still get pain in the legs but its def not as bad as it was so I assume its the Gabapentin working.

I actually have had better sleeps as well-(chronic insomnia sufferer too) and last night I managed 4 hrs continuous without waking which is very unusual.

Hoping tonight will be the same - I felt so much better for the kip.

Luv n hugs x

I have RLS (Restless Leg Syndrome) as well as Fibro and CFS/ME. My legs drive me insane every night with the spasms, shooting pains, red hot feeling. I take 2 x 750mg Methocarbamol tablets when I go to bed, by the time I've read my Kindle for an hour the tablets have kicked in and I can fall asleep. 9 times out of 10 it calms my RLS and has been an immense relief to me generally. I no longer dread night times.

I previously took Hydroxychloroquinine for my RLS and it had no effect at all.

Have a word with your GP's to see if this medication might be suitable for you bearing in mind other health conditions and also your current meds, allergies etc.

Hope this helps! (((hugs to all))) xxx

serenarian profile image
serenarian

I wear two pairs of socks to make sure my legs stay warm, cold affects my circulation, so staying warm is essential. making sure I have something like diarolyte to keep body salts etc balanced. Ralgex gives my muscles warmth, there's a theme here!! Walking about when it gets really bad, cannot walk far as I have spine damage, but keeping moving helps, those sitting down leg exercise things help. Hate restless leg syndrome and muscle spasms.

mollyandmaisie profile image
mollyandmaisie

rupinerol prescribed for my leg jerks has helped a lot. try asking your doc for them....

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