Fibromyalgia Action UK
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Need some advice

Last 2 years i have been getting cramps and spasms mainly in my legs. Also I get a burning sensation. The last few days getting pain in my legs and arms. The pain in my legs is really painful. Been to the hospital and GP's but no answers. Taking gabapentin and amitriptyline. Thanks for listening

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Hi Maisie1

I sincerely hope that you are feeling as well as you possibly can be today? I am so sorry to read that you have been having problems of this nature with your legs.

It sounds akin to restless leg syndrome? I cannot say for sure as I am not a doctor, but it sounds along those lines? I am so surprised that you never had any suggestions from either your GP or the hospital. I was wondering, what did they actually say?

I have got the leaflets that accompany both these drugs, and I have just read the Gabapentin side effects and it mentions 'jerky movement' but not muscle spasms? And on the Amitriptyline the side effects state, 'involuntary movements, jerking, uncontrolled shaking.' Are these the kind of things that you mean?

I have pasted the link to the FibroAction website below, I really hope that you find this useful:

fibroaction.org

I think if I were you, I would go and see a different GP at the surgery and get another perspective? I genuinely hope that you can find some resolution and relief to this issue.

All my hopes and dreams for you

Ken x

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Morning Masie,

Oh that sounds very nasty so it is now in your arms too. Poor you must make your night times intolerable.

I am not a Doctor so I would suggest firstly make an appointment and back you go have another chat. It could well be just part of Fibro or side effects of the drugs you are on.

Try and relax that may help so relaxation techniques are widely available. Zeb has some wonderful pictures that you look into the distance and just float away I will get her to pop one up again.

Sorry no more help but I am here if you need to chat just PM me

xgins

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Hi mdaisy I have a burning pain in my legs too at the top outside thighs and back of ankles doc don't know what it is either sorry to hear you are suffering too x

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Oh masie sorry not mdaisy lol x

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Oh what a pickle. he ! he! Expect there are quite a lot of fibromites who suffer this,

It is I suspect a part of Fibro and to which end I can only

Whish that there was an easy answer for all of us!.

So I think if you can legs up when you sit down on a foot stool or something. I am a firm believer in elevation, it does tend to help.

xgins

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Morning Maisie sorry to hear about the pain and spasms speaking from personal experience they are exhausting to deal with I take Pregabalin for the spasms it work for pain as well. (it's the sister drug to gabapentin).

Gins is right to suggest relaxation as it mimics sleep giving your body the chance to get rid of some of the nasty toxins and chemicals that contribute to the pain we feel. I fit relaxation into my day once or twice depending on my pain levels because I don't sleep to well and I also personally find that drinking drinks hi in anti-oxidants helps too.

I thought you may be interested in these couple of links :)

Two of my relaxation posts :-

healthunlocked.com/fibroact...

healthunlocked.com/fibroact...

One of my quiz posts including the the link for the complementary medicine fact sheet link from

fibroaction.org :-

healthunlocked.com/fibroact...

Of course none of this should override the advice of your GP and if you are thinking about alternative therapies it is essential to speak to your GP first. I am also not a medical professional just sharing some info with my fibro friends :)

I do personally think it to be a good idea to go and have a chat with your GP about the way that you feel sometimes we need to be a little more persistent than normal. Ask your GP what options do you have? for instance can they refer you for hydrotherapy?

I am wishing you relief from your pain and am sending you healing fluffies filled with sunshine to you

:) xxxsianxxx :)

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Hi Maisie1,

I had bad body cramps like yours last year and I asked doctor to check my iron levels and my ferritin came back low 20.0 ug/L (range 25.00-300.00) . I now take perscription 325mg daily of Ferrous sulfate and the cramps and spasms have improved greatly. Might be worth asking doctor for bloods to be checked. Wishing you better !

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Hi Maisie ive got the same cramping in the back of my legs and couldn't move for two days, went to see my gp and the gave me neprexin and writhing half hour of taking one the pain went away. Might be worth asking your gp about it, might not work for everyone but worth a go. I do get jerking movements when asleep too but that's from my gabapentin. Good luck and hope your feeling better very soon x x x

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Hi there, May i suggest that you try taking Malic Acid, i have been taking it for a few weeks now and have had a reduction in muscle pain.

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Also Magnesium is good, but NOT magnesium Oxide (That justs loosens up the bowels) Magnesium CITRATE and Magnesium MALATE (+malic acid) are both supposed to be the best, as they absorb better, but I found the Citrate was best.

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Hi Glenys, thankyou for that, i will give them a try x

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Hi Maisie1, So sorry you are suffering with this. I have constant pains in my lower leg, ankles and feet which sometimes spasms enough to make me jump, lovely sight :) I also have pains in my arms. The pain relief is paracetamol and the Duloxetine, at present the GP won't give me anything else, I have been told it is part of the Fibro. I have also been told by my family that I put a very brave face on and that maybe I should be telling the doctor how bad the pain really can be. Is it possible you do the same? I think most of us who do suffer constant pains do the same thing, someone asks you how you are and you reply "Yea I'm fine, thanks" its automatic :p

I hope you can get sorted, but I can offer sympathy but no advice as I am useless at that...Susan :)

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all signs of fibro, maisie1, without medication

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Morning Maisie, I have been experiencing the same as you for a long time now and is getting worse I can't stand it, so I went back to docs and have n appt to see the neurologist on May 14th, my thighs feel like I have insects crawling thru them they feel like they are burning and ore and sometimes feels like I have torn the muscle, I also have these feelings in my left shoulder and inside my right ear... Hope you get sorted,n but do go back to your GP see a different one if you don't get any satisfaction, don't leave it like I have... Gentle hugs .....Dee xx

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Hi cookie iv exactly the same feeling inmy righr thigh it goes numb first then burning feeling thenlike im bein slashed with knife or summit boohoo xx

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I take Quinine for night leg cramps

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I went to my GP three times with these symptoms and when I finally had the results of my blood test that is when they finally decided to test me. I was gradually put on Levothyroxin 50mcg gradually building up to 125mcg. Even before I got to this dosage I felt so so much better and I was like a new woman. You don't say if you have had any bloods done but mine was off the scale, so I started my Levo straight away. Pain killers do not seem to touch these pains, and in some cases aggravate the symptoms. You do not say if you are already on thyroid treatment, but it sounds as if you should be. Everything you describe, cramps,spasms, pain in legs and arms sound so familiar. I was not getting any sleep with mine and that's when I really stuck things out at the doctors as I knew there was something wrong. Two years is a long time to stick that kind of pain. Go to the doctors again and even if you have been tested for thyroid ask if they can do it again. GOOD LUCK

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Take a note of the thyroid blood tests results (probably uou will only have TSH done, and T4 at a push) because even if GP says it looks OK, there can still be a thyrois issue - have a look on the THyroid UK website for more info.

thyroiduk.org.uk

The symptoms are similar, and some thyroid disorders (such as non T4-T3 conversion and Hashimotos - which is actually quite common) require tests such as T3 and Thyroid antibodies to really see what is going on. It is very controversial at the moment, and some labs won't do these extra tests until you dig your heels in - or go through certain consultants, but a lot of doctors believe Fibromyalgia is really undiagnosed Hashimototos thyroiditis.

Hope this helps Hugs XGlenys

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I have had blood tests but not sure what for

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Also Magnesium is good, but NOT magnesium Oxide (That justs loosens up the bowels) Magnesium CITRATE and Magnesium MALATE (+malic acid) are both supposed to be the best, as they absorb better, but I found the Citrate was best. 2 or 3 tablets if Mg Cit from Holland and Barrett work with me - may be worth you having a go, as it has been found that a lot of people with Fibro have a deficiency of Magnesioum. Also soaking in the bath with Epsom salts is supposed to help as the magnesium is absorbed into the muscles - and its nice!

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Hello Maisie 1,

I hope you're feeling a little better today.

I was very interested in your post as I suffered almost exactly the same thing as you although it didn't affect my arms. For over two years I went to the GP a number of times complaining about the spasms, cramps and burning sensations in my legs, a few times, my legs would cramp/spasm when I was coming down the stairs or crossing the road, the spasm would hold for a few seconds, then release - leaving me with no muscle tone. It was extremely frightening.

I was fobbed off with a variety of suggestions including taking more exercise (I walked everywhere as I didn't have a car at the time) and as a Social Worker, was very active so I thought it was ridiculous. I was even told to eat at least one packet of crisps every day as there was a chance I wasn't getting enough salt in my diet (I don't each much salt). None of this helped

After a while, I started to develop other symptoms including 'running out of energy' - almost like a car running out of petrol. I basically would get to a point where all I wanted to do was just lie down and sleep - like I needed to 'recharge my batteries'. A series of tests were then carried out which threw up a variety of things including some thyroid issues but what was interesting was that it took a locum doctor to come in and insist that I undertake a glucose fasting test! It turned out that I'd been Diabetic 2 for quite some time.

Even though I have also been diagnosed with Fibromyalgia and continue to periodically experience the spasms/cramps as well as the lack of muscle tone in my legs, none of the consultants have seen have been able to explain it away and have now put it down to neuropathy as a result of the Diabetes 2.

Sorry to write so much but I'm so intrigued by your symptoms and have never received a diagnosis I'm happy with that I'm particularly interested in what your outcome might be so please, please do come back and let us know what your outcome is once your have seen the relevant health professionals for your case.

I'd like to end by saying that I have tried both malic acid and magnesium treatments, I even soak once a week in Epsom Salts - all with limited benefits and I continue to have these symptoms intermittently.

Stay Positive, Stay Well.

Fight the Fibro

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I have seen neuros gp's and a rheumatologist but to no avail. There has got to be something wrong. I have bought loads of vitamins but still no change. I don't know what else to do. Thanks for the reply

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