Non-stop muscle twitching and "running ants" feeling

have you ever found relief or a reason? i have suffered for six months now and im scared to death

I happen to have same condition, constant muscle twitching all over. I have heard about Gabapentin as a good drug used to manage the twitching, what kind of dosage do you take for the twitching and how often do you take it? Also to what extent has it helped ease the twitches you have?

I take 600mgs of gabapentin TDS and 50mgs of Ametriptiyline at night and it has helped.  Still no diagnosis

Hi Mary.

In October 2014 I felt an altered sensation on the back of my shoulder. By January 2015 this had spread over the top of both shoulders to a full on sunburn sensation. Went to see the neurologist who examined me did strength reflex tests etc and an MRI of my brain,neck and spine. This came back completely clear. I had blood tests done all Completly clear. I went to see a second neurologist who read the MRI report examined me and said 100% I did not have MS or these other neurological disorders I found online and that I was suffering from anxiety and stress and revered me to a pain clinic. By now I was getting burning tingling and the creepy crawling sensation all over me. I also had a weak wrist and ankle on the right side of me. I then went to see a third Neurologist who again examined me read the MRI report and took down a detailed history of my symptoms. By now I also had skin hypersensitivity. She then went to see her senior consultant so now he's the 4 th neurologist and he said I was heading for a breakdown. He referred me to a counsellor which I am on a waiting list.

I find every day so difficult suffering the burning tingling searing pain. Also the creepy Crawley feeling. Please please advise me if you think the doctors are right or could this be something sinister. Can't believe anxiety and stress can cause this. I read ur post and wondered what you did to relieve these symptoms. Thanks. Please please can someone reply and give me some advice. Thank you for reading this.

So sorry that you are suffering.  After seeing all those doctors they would have found something.  The tests they do rule out most neuro diseases.  It sounds to me that you have health anxiety and unfortunately it is very hard to reassure you.  Theses doctors have done years of training and they no there stuff.  I am in the same position.  I have lots of muscle twitching and a burning sensation mainly in my legs.  I think that your brain is picking up,on your anxiety and making the symptoms worse.  I have had this on and off for 3 years.  I keep getting reassured by a neurologist but it doesn't work. After all we know a lot more than they do.  I also consult Dr Google which is lethal.  I go to my GP and tell her what I have got, the last one was a brain tumour. What illness are you worried about.  MS would have shown up on your MRI and motor neurone shows a weakness which the neuro can rule out.  Sometimes there is no answer.  Have you tried an anti depressant that might take the edge off it

Also there is something called benign fasciliation syndrome.  That can mimic quite a few diseases.  Do you mind telling me your age.  If I think of anything else I will get in touch also if you prefer to talk to me I will give you my email address.  I was quite poorly due to low vitamin D levels.  I would go back to your GP.  Before you go write down exactly how you are feeling and ask them to read it, that way you won't forget anything.  Take care 

Dear Mary.

Thankyou for ur speedy reply. I would love to be able to email you directly. I am 48 and desperately worried. I have no support and am sinking fast. Please can we keep in touch. Thanks.

anytime

Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

Hi Mary you're email address was removed. It says you have to put in the private messages. Not sure how to do this xx

Sent info private message

Hi Mary sorry I haven't posted for a while. Thought I would update you on things. Please tell me what you think. My symptoms have now got worse. Clothing hurts on my skin. It constant feels like I'm burning from the inside out. My last neurologists appointment was in September. He again said this is not neurological. The pain clinic that I went to thinks due to anxiety and stress my nervous system has become sensitized. For a brief while in September things were really good my symptoms seemed less and I felt more normal than I had in a long long time. Stupidly I started decreasing my Ampitripline from 40 mg to 20 mg as I was concerned about weight gain. I did this slowly but then BANG the pain came back big time. So I've started upping them again. I saw a neuropschologist who said I had somatic symptoms of underlying stress and anxiety and to stay on 40mg of Ampitripilne at night and 10 mg during the day. I haven't done that yet do you think it will help. Could you also tell me the side effects of Gabapentine as this has been suggested to me as well. Please please give me some advise as I am desperate now and really really low. Thanks for reading this.

Hi Mary just thought I would give you an up to date report on my symptoms. Perhaps you could give me ur thoughts. My symptoms have got a lot lot worse. I now have a feeling like soaking wet skin all over me along with all the other symptoms I previously mentioned. Went back to my doctors no help she said go back to the pain clinic. They will not refer me to any one else. Really really desperate now. Please if any one has any suggestions please please let me know. Thanks.

I know it may sound strange but it sounds similar to symptoms of anxiety.  I get a lot of hot sweats and some cold.   What tests have they done.  My vit D levels where low which made me feel ill

Hi Mary Thankyou so much for your speedy reply. I have had blood tests in January and then more extensive blood tests in June. They both included vitamin B12 and both times all tests were completely normal. I have had blood tests done yesterday and I will find out the results next week. But you know I am convinced they will be normal.

My doctor said when I saw her last Wednesday that I just have to accept the diagnosis I have been given. But very difficult to do when ur in constant discomfort and pain.

I wake in the morning feeling scared I go to work feeling scared I am constantly scared. I am currently half way through CBT Therepy but it's not helping much. I no longer fear MS but as one of the hospital has said they think my nervous system has become sensitized due to anxiety and stress that's why I'm getting these symptoms. I am so frightened where it will end its the uncertainty that's slowly killing me. I have a family to look after they need me so much but I'm irritable and snappy. Sometimes I wish I wasn't here anymore and am so desperately lonely. Thankyou do much for replying.

It sounds like you could do with an anti depressant.  Fluoxetine works very well.  I have health anxiety and I have had CBT and it was of no use.  If you think about it your body is completely tensed up,along with your brain, so your nerves, muscles and other parts of your body are getting no time to relax.  What do you think you have got.

Hi Mary I forgot to add they are also testing Bone Profile,FBC & Differential, LH & FSH Vitamin D (250H Vit D) routine for defiency, C Reactive Protein, Ferritin, Thyroid - Function - TSH & FT4 and lastly Vitamin B12.

I was also tested for copper deficiency and Lyme Disese in June. All completely clear. I am in a lot of pain tonight but have been extra stressed so so desperately worried. It seems no one wants to help. Thanks for reading this xx please someone help me xx

Have they considered fibromyalgia for your pain?.  I hope you don't think I am being rude but is it the though of what the illness could be or the actual symptoms that are the main problem

Hi Mary I think the pain management team that I have seen are perhaps the closet they say they think my nervous system has become sensitized due to anxiety and stress. But I have read that people that have this can get trapped inside their bodies. Mary so so scared.

It was suggested by one of the neurologists that I should go on floroxitinre but I have to stop my ampitripiline as that in higher doses is also an anti deppresent. I just can't do that I tried to cut down but after a few days the pain was horrendous. I can't go on like this I just can't I don't know what to do. Thanks for replying so quickly xx

Hi Mary in answer to your question it is both that scares me. Also the what ifs. You know the really strange thing is on waking first thing on the morning there are no symptoms. Although I only wear briefs in bed so there are no clothes on me to irritate me. I got to a really good place in September. I told myself what the hell I just don't care any more and you know I did get better symptoms were less but then I started cutting the dose down since then it's all got really really bad. I'm back on the higher dose but I haven't got better. Just don't know what to do. I might add I also get twitches all over my body and in my upper back. Some things have got better though. My wrist is no longer weak and all my eye twitches have gone. But the skin sensitivity has got worse much worse.

Amitriptyline is  good for a sleeping aid and to some extent pain management but not so much as an anti depressant.  Prozac works a lot better.  Ask your pain clinic for an alternative.  Do you think once you relax the pain will improve

Can you tell me if there are any illnesses that you think it may be?  We may as well be honest with each other.  For a long time I feared motor neuron disease and seemed to get a lot of the symptoms

Maybe it would get better but I'm to scared of the pain that might come. At the pain clinic they suggested Gaberpentine to take along side Ampitripilne but when I saw the pschoneurologist he said don't try Gaberpentine it has nasty side effects So I hadn't. Conflicting advise. Don't know what to do.

Hi Mary my biggest fear is that this is gonna get worse. Yes I did fear MS but strangely this fear has gone now I'm just scarred where I will be this time year.

I went on gabapentin and had no side effects.  Every medication affects people differently.  It may be worth trying.  There is also pregabelin

I think if you could try and use another pain killer and have a go with prozac ( fluoxetine) it might help.  You seem very depressed.  

Yes Mary I think I'm gonna give it s go did it make ur symptoms better. I've heard with Gaberpentine it can give you a slurred speech and also weight gain. Did this happen to you ?

The other option is diazepam which can be good for muscle pain but can be addictive

Hi Mary yes I am very depressed but

Only because of this. Don't want to become a addict to anti depressants but I've got to do something fast.

I had no weight gain or slurred speech.  If it was me I would give it a try and then get on some Prozac to give your mood a boost

Unfortunately anti depressants can take a few weeks to get to a therapeutic level.  Let's hope the gabapentin helps

There are studies that show pregabelin can also help anxiety

So which combination do you think will be best that are compatable with each other that will tackle the pain and anxiety?

Obviously I am not a doctor but I would give perhaps the gabapentin and Prozac a go.  The are very reluctant to give benzos.  Can I ask where you live

Hi Mary I live in London in a town called Wallington. Where do you live?

I live near Nottingham.  Are you going to try and see your GP and ask what he thinks.  I struggle with amitriptyline I find it very sedating

Yes I've just been talking with my husband and I will make an appointment with my GP and also the pain medicine department although for both there is a wait. I will ring them on Monday. I found Amitripiline sedating at first but been on them for a year now so although I get a good nights sleep u don't feel sleepy in the day anymore. Thankyou for taking the time to reply I don't feel so alone.

I am here whenever you need to talk.  Let me know what your GP says and the pain clinic.  At least you have the top hospitals in London.  Look after yourself

Hi Mary if you want leave you're phone no in the private message ( not sure how to do this) and I can call you if you don't mind.

If you would put ur email address in the private messages or/ and ur phone number we can contact each other off line. I would give you mine but not sure how to do this either.

Hi could you also tell me where you live. Thanks.

Have you been tested for small fiber neuropathy?Some of your symptoms sounds a lot like mine after having a adverse reaction to the antibiotic cipro.The antibiotic levaquin is known for this too.A lot of these symptoms start weeks or months after the antibiotic was finished.Hope this helps.

Hi there no I haven't been tested for small fibre neurology. I have seen 3 neurologists a neuro psnhologist sooo many doctors and a pain management team who have come to the diagnosis of a sentitized nervous system. This to be honest fits with me as your nervous system can be tripped into becoming over sensitive due to anxiety and stress. I am a very anxious person and have had a lot of stresses over the past few years. However the actual neurologists I've seen have all said and I quote this is not neurological what I'm suffering from. I had a really good patch in September where after the last neurological appointment I accepted what I had been told and after a few days my symptoms did settle down. Stupidly I reduced my pain killers ( 40mg Amitripiline ) to 20 mg and after a week got such severe burning pain I had to increase back up. Unfortuneatly it brought back the terrible anxiety and real real fear of what the hell is happening to me. So to date I have terrible burning across my back down my arms and legs. On my hands and feet on my face everywhere pretty much I also have a lot of tingling and highly sensitive skin. Clothes feel like wire. Despite all this I am trying to stay positive as I have a lovely family and a life that if it wasn't for this I would love. Feel scared everyday when I wake as it is hard to accept what the day may bring. The painkillers take the edge off the pain but it's there all over all the time. I pray a lot also and meditate and try and decrease my stress levels but very very hard when you are constantly fearful and worried. Thanks for your suggestion I hope the new year is a healthy one for all of us. God Bless.

Do these things help?

I have some of these same symptoms. Maybe try and go to a rheumatologist. You could have fibromyalgia. With fibromyalgia your skin can become so sensitive that clothing hurts. All touch can hurt the skin. Also I was vitamin d dufficient. It was 13. I had to take 5000 d3 everyday. I believe it caused my skin pain, nerve pain in legs. It affects the mind and nerves. Just something to look into if the neurologist isn't helping. So sorry your going through this.

I believe you are suffering from Rsd reflex sympathetic dystrophy it's also

Called crps

Your suffering is the exact description of the disease

Hi thanks for replying. I am still suffering with no diagnoses. I have read about CRPS but I don't think I fit as I have had this now for two years. I had no injury and the original area which started to create pain was my back on the left side.

I now have burning all over my body and have been told I am suffering from a sensitized nervous system due to a history of extreme anxiety. Then I have been discharged with painkillers that don't do a lot.

I am going to see my GP in two weeks time as he is the only doctor who seems to want to delve a bit deeper and I will certainly mention it to him.

I had a really good spell back in February where my symptoms died down a lot. But then I had a very worrying situation arise which kicked it all off again. The thought of living like this for the rest of my life is an awful awful feeling but what else can I do? I frequently cry and am scared of what is coming each day. I don't want to die but don't want to live like this either. No one really understands because nothing can be seen.

I am in the loneliest saddest place you can possibly imagine and am at my wits end. I know I am just about hanging on with my fingertips but how for how long I don't know. No one seems to want to help.

Thankyou for your interest and suggestion.

Hi sorry I haven't posted in a while. I recently have seen anothor neurologist. I had an EMG which was fine. He is now booked me for a skin biopsy which he is doing to test for small fiber neuralgia. Of course really scared. He said he is expecting it to be clear but I'm still worried as my symptoms are quite bad. Clothes hurt skin burns and tingles. Twitches everywhere. This started in my back and has spread downwards. It is very calm at night or if I lay down. May I ask how yours started and how is it now. I have got to wait 2 weeks til the biopsy and then anothor 4 weeks for results. Don't know how I will get through.

Hi, this is my first post here. I read all your posts and felt like I should register so I can respond.

In my opinion, you've already been advised on what's wrong with you, and that is Fibromyalgia. You've described the classic symptoms perfectly, over and over.

You're not crazy, but there's something wrong with your nerves, and the way your brain experiences pain. Fibromyalgia is very real, but still misunderstood by a lot of people, including some health professionals. It's a condition you may have long term or all your life, but once you understand it you can manage your symtoms better, and reduce your level of anxiety, which is part of the vicious cycle. The other parts, for most patients, are pain, depression, insomnia, and fatigue. Each of these contributes to the others, and ends up in an unescapable and escalating cycle. Your brain learns patterns of pain and it becomes very hard to get out of them. Even light touch can feel scary or painful. Muscle twitches are common, as are strange sensations like temperature, wetness, etc. Fibromyalgia sufferers often have unexplained pain in all parts of the body, which can disappear and reappear without warning. It often goes along with other conditions like IBS (bowel problems), a past history of abuse or trauma, restless legs, chronic fatigue, depression, and hypothyroidism.

Your desperation is obvious from your posts. This unfortunately is common with FM patients who aren't properly diagnosed and treated. But please, look more into it. Even the wikipedia page on FM is pretty decent. There's no good blood test to diagnose it, nor would it show up on a brain scan or most neurological tests either. It's usually diagnosed just by listening to the patient's story and observing the patient. I'm shocked nobody has mentioned this to you professionally, but I see "mary" above has mentioned it, only to have you brush it off. You should listen to her, it really does sound like Fibromyalgia. It accounts for ALL of your symptoms, it won't kill you, AND you can drastically improve your quality of life if you understand it and treat it properly. I suggest you at least look into the possibility. I understand you're very anxious and depressed, and have trouble accepting diagnosis, which is common with FM. But I've read all your comments on this post, and every single symptom and fea you mention is completely explained by what I know of Fibromyalgia.

If you can't get your doctor to listen to you, look into a "functional medicine" doctor and/or a naturopath. But even mainstream medicine nowadays is beginning to understand and properly diagnose FM. Good luck!

You have Fibromyalgia. I have had it for 25 years. Can't be touched.

Hi . Before i write anything .. did you sort the problems out?

Hi I have since last post have been tested for Small Fibre neuropathy and biopsys have been clear. My neurologists does not think I have fibro as I don't have the 13 pressure points that is required for diagnoses. I am still in very much the same place as I was before but I'm now on pregabalin and this does help a little. Still so low and so depressed.

Well have been tested for Small Fibre neuropathy by having two biopsys. Had EMG nerve conjunction study all clear. My neuro has diagnosed it as Functional neurological disorder. But still in so much pain and very very down. On pregabalin now and has helped a bit.

Strange thing is it goes away almost completely. It's not there in the morning till I get up.

Sorry that was supposed to be it goes away almost completely when I go to bed. It's not there in the morning.

It starts as soon as I get up.

Strange thing is it's subsides when I go to bed. It's not there in the morning. It starts as soon as I get up.

How are you feeling now? I have this too and cannot sleep. I don't know what to do. 

Hi how are you feeling now. Have things improved. I am still suffering. 

No. I am on Friday seeing a rhumetogist to see if I have fibromyalgia. Still suffering and so scared. 

Hi. Ive read your posts and it certainly seems VERY much like CRPS (Chronic regional pain syndrome). I have had this for 10plus years. I have had many of your symptoms. Unfortunately, many with this have a very difficult time getting diagnosed. Fight for yourself. I wish you the best of luck.

Hi! I know this is an old post however, I'm suffering from constant muscle twitching (which is spreading) as well. However, after reading all the posts to this point, I have a suggestion that hasn't seem to be brought up ... HAVE THEM CHECK YOU FOR RSD. It's basically overactive nerves (I think) but, you don't have to suffer. 

My mother had this and is much better today, with few to no flare ups. 

My condition remains undiagnosed however, I was pretty much blown off by a neurologist. In the meantime, my blood pressure is stroke level high.. I have horrific fatigue and it's getting worse. I need back surgery but know this is not related. I'm feeling very alone and honestly am starting to feel defeated. 

Hi Jenny 

I still don't have a diagnosed I have still got muscle twitching and muscle atrophy I've been referred to a proffessor in London I've had pet/ct scan and MRI and they still haven't figured me out  life gets a bit hard going.doesnt it.  I hope they figure you out  I feel defeated too at the moment and my wife don't seem to understand why I'm so down ! I've been on diazepam since December and trying to get myself of them but I'm feeling so so depressed ! I have imagined killing myself some how but what stops me is the fact I'd make my kids and family cry if I did that but I feel so alone. When you've got a constant pain like this it's terrible . Sorry for the Emotional message .. hope you get figured out x 

Awe. Do you get diagnoses?

I am on a twitching muscles forum.  Do u live in wallington?  I would like to contact u offline but dont know how to go about it.  I live in Sutton.

Hi. I’ve just seen your post from 3 years ago and just wondered if you ever found out for sure what the problem was and whether it has resolved? I have very similar problems - severe now- and have also been told its anxiety. I hope you are better? 

Dont know if you r still experiencing the twitches, pain etc all over.  Hope its better.  Sounds exactly like what i have esp since last Dec 2017.  Really got bad in mid May this yr.  I have had several blood tests none of which has diag the twitching.  I was found to be Rhem Arthritis positive with Osteoporosis and have Dermatitis also.  My ANA blood test was negative, so thats a head scratcher.  I have PTSD and suffered with GAD for 50+ years.  Its worst now that im 70yo and in major panic mode about dying, or being close to the end of life.  Only thing i havent done is Neuro tests.  Dr Google seems to think i dont have MS, Parkinson's or worst ALS, but im going to pursue that next.  Again, if you are better, glad to hear it. 

 

Did taking Vitamin D supplements subsidize your pain ?