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  • Dystonia

    Dystonia

    Dystonia is a term that refers to a range of movement disorders that can affect the body, forcing it into awkward postures or positions. Read more →

  • Muscular Dystrophy

    Muscular dystrophy is muscle wasting condition that affects around 70,000 people in the UK. Read more →

    I also get lower back pain usually at night that sometimes spasms quickly since my balls swelled up





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    Like some of the people above my ankles keep on clicking and getting spasms. it feels as if someones trying to bend my feet in half but it only lasts a few minutes. Someitmes its too painful to walk and i have to sit down. I do a lot of skiing and ice skating and i was wondering ifthis was the cause or does everyone get this and im just overreacting?





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    Im 17 and used to be really big I have lost alot of weight and now I have excess skin and its horrible what can I do ? I also get stomach pain and my stomach swells and the muscle bulges and the muscle sticks out when I have spasms what is this im fed up of putting up with it i have no apetite and everytime i eat im either sick or my stomach bloats with terrible pains?





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    Since the birth of my son 31 years ago I have had proctalgia fugax spasms every two or three months especially when walking more than twenty minutes and at night when I am losing weight. I had a sphincterotomy two three years after my son was born for an analysis fissure. The pain of p f episodes is severe and does not subside for ten minutes or so though is helped by vent link inhaler. Is there any other treatment or advice to help with this problem please





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    I have this ive been refered for anal stretching. Also botox is a new treatment on the nhs but may cause incontinence.its spasms so bad i feel like hot knives in my anus. Its horrific! I cant wait for my op! Ask your doctor now its becoming more common. They still dont know what causes the anus to shrink and spasm :(

    i am 28 and for the last 9 months ive been havin sharp pain in my left breast and my armpit sometimes hurts.i dont have as much energy as i use 2...i would love to be able to run about playing football with my son but i cant i get so out of breath... ive lost over a stone and im now suffering from panic attacks ive had a 24 heart monitor on cos i am convinced that its my heart....doc has done loads of tests and put it down to muscel spasms but im not convinced.. o and i have Gastro-Oesophageal Reflux Disease... and Acid erosion in my stomach can any1 help i feel as if im going mad x





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    I have been dealing with ibs for about a year. I usually get flare ups every few weeks or so, or as soon as I have spicy or greasy food especially Chinese! However for the past month I have been dealing with constant pain, not one that comes and goes on different days. It is either very crampy on the mornings and nights where I have to rush to the toilet and during the day there is a constant dull ache that never goes??? Is this normal! Also, Usually my bloating comes and goes but the past month it has never seem to gone down!!!! It looks like I'm pregnant or something it's so worrying, does anyone else deal with bloating that just won't go? I have been getting major back spasms that are quite worrying and chest pains? Any one else?





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    I have experienced exactly what you have put on here has occurred to you, please get in contact with me would love to hear what you have/haven't done. Am really worried and could do with some advice or at least someone to talk to about this

    I am 35 years old and had both children by c section, 1st by emergency and 2nd by elected. I have lost 4 stone in total since having the boys. My overhang is painful over my scar. I have been told i have split muscles and to stop doing pilates as it makes it worse. I lost nearly 2 stone last year but since Jan 2014 my overhang has been painful, with spasms all round the base of my stomach and back. My GP had put a request in for abdominalplasty and have been refused. It has now left me low in mood, i have started wearing baggy clothes, i dont like to go out and i am embarrased for my children to be seen with me. I really need help as i have no help or support at home. I am getting to a point where i just want to cut it all off myself as I cant afford to have it done privately, we cant even afford a holiday





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    ive had ibs for many years now.ive been taking buscopan for the spasms, but my spasms have got really bad lately and the flatulance has got really bad and very very smelly and very embarrassing. i eat fairly heathly due to being on a diet but the pains from the spasms are very painfull and im finding it very hard to concentrate especially when im doubled up in pain.i have tried other medication for the spasms but to no avail. is there anything else i could try for the spasms i would be greateful for any help thank you.





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    I have started getting spasms in my eyelids, that cant be controlled. I have seen my GP, but they think it could just be linked to stress. The thing is I do work daily with computers, and not sure if this contributes to the spasms. Its so annoying, as I lose focus, and it feels like everyone can see it. My next thing to try is have another eye test, although had one last year. They diagnosed Dryitis-excessive dryness of the eyes and lots of blinking.This was when I didnt get the spasms though. I hope does get worse than it is.





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    I'm 14 and i've never done anything to myself or done anything atall, but i seem to get these spasms when anyone even goes near my upper legs or anywhere near that area, sometimes even when im just sitting down. They can last for ages and other times its just spasms. Is this what i have ? and how can i sort it ?





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    hi, i'm a 28 year old female with CP on my right side and no heel as well, I have really bad muscle spasms/twitching in legs at night when i'm trying to go to sleep. I get the spasms when i've done to much during the day physically or not done enough. Anyone have suggestions on what i can do to improve so i can sleep better? thanks





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    I have CP as well. I will take a tizadine and an ambient tot sleep. Also Kolonopin 2 hours before bed helps my muscles relax and takes some pain away. Hope this helps.

    as it turns out i suffer from hemifacial spasms which seems to be a form of dystonia. My condition is getting alot worst now with my face spasming out 12 times daily. docotors tel you not to stress and rest but this seems alittle difficult as a single parent. Lately i am now getting twitching in my left eye which is scarry as this is how my spasms started in the right side of my face. Two suffer both sides is said to be very uncommon so hopefully it doesnt progress. i am now waiting for my first lot of botox injections hoping this will help. kelly

    Hello I am 24 years old, I have a suprapubic catheter which I have had for nearly 1 year and have fowlers syndrome . I have reacurrent UTI and bladder spasms etc, and I take oramorph for pain almost daily. I feel secluded and lonely and like the only person in the world with this syndrome. My gp does not know how to treat the condition I have because it is so rare, I hardly see my consultant and the only professional I do see is my incontinence nurse who changes my catheter every 8 weeks . I am currently off sick from work at the moment due to the agonising pain from the bladder spasms . Scared of losing my job all because of this deliberating syndrome! ..





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    Hi, since the birth of my son 6 yrs ago, I have had same issues. Retention, over active bladder and painful bladder syndrome caused by nerve damage during delivery.. I have to self catheterise, and spend most of my life in the toilet it seems. Even going on public transport stresses me... has your doc suggested sacral nerve stimulation? I am currently on a trial, if successful permenant device will be implanted. I hope something can be done to help you soon.. 6 years ive had this and it consumes your life. Ask to see urology specialist and ask about sns xx

    Hi Tracy, I have been out for the SNS but it will take a long time as waiting list is long. Are we classes as disabled or have a disability as we are incontient?

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    I am so happy to see that i'm not the only one for whom the symptoms happen when I lay down. My neurologist said he'd never seen a case like mine where the spasms and twisting actually occurs when any part of my head or neck touches anything. My symptoms started in feb 2014 and they progressed very quickly and I was diagnosed with cervical dystonia in feb 2015. I have been prescribed a non addictive sleep aid called zoplicone 7.5mg, so no more laying there for hours in agony with neck spasms, until the exhaustion sets in to finally fall asleep. This drug leaves a bad taste in your mouth the next day until you get use to it. No day after groggyness. I just had my second round of botox which stopped the twisting but the muscles still contract and stiffen when I lay down. I also find sitting in a soft chair triggers the spasms. He assures me that the symptoms will decrease with every treatment. I must say that not being able to lay down and watch a movie or even lean my head on my husband's shoulder is frustratin. But after reading all the ways that cervical dystonia affects people's daily lives makes me feel like it could be worst.





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    i have an anal fissure at the moment.. having passed hard stools a few days ago and noticing some blood. however the fissure now is causing me so much pain.. i didnt sleep last night as i am in constant spasm (every few seconds my whole body spasms) and it has continued all day. i haven't passed stools for over 24 hours and the spasms started about 12 hours ago.. i have taken 2-3 sitz baths today and used anusol but nothing seems to be working as yet. do you have any advice for the muscle spasm.. feels like a razor is cutting my anus





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    Thank you! Thank you! Thank you!!!! Ive had mine for 3 years now, it's like I'm almost healed, I don't suffer from extreme spasms anymore, their very mild but still very uncomfortable to deal with, plus there's always that leakage that comes with those spasms, and that just gets annoying and it won't stop until I take 2 Ibprobhen to kill the pain. I've been on Nitro but now that you've posted this, I literally just scheduled an appt with my Gastro and I'm going to make them give me this new cream!! I really hope this works, I am so over this fissure. Seriously thank you for commenting, Id never heard of this Diltiazem before and I just did some research on it, it looks promising. If this stuff works, I'll feel like you saved my life! I was seriously crying the other day because I'm just getting so frustrated with having it for so long. thank you again! ...If i can remember, after I try the cream, i'll come back and let you know if it worked for me!!

    i am 43 and i have had abdominal pain for over 2 years. Un-diagnosed at ER visits, that included CT scans and ultra sounds. They sometimes would tell me I have an ovarian cyst. The past several months the pain has been so bad, I literally thought I was dying. It is swful. I went to a doctor that told me about vagina spasms and musles of the pelvic floor, some abdominal muscles.. etc.. that go into spasms and lock up and cause very bad pain. This can cause the ligaments and tendons that attatch to the uretha and bladder to pull on the uretha and bladder and cause continued bladder infections and also irritation and/or infection of the uretha. I have to use some dispositories with medicine from a compund pharmacy to hyelp stop the spasms. I am getting physical therapy. Like when we have back pain and musles have spasms in the back or neck etc. The same thing. It triggers pain and it radiates to other areas. I know when I get stressed right now it makes all my pelvic musles go into spasms. It's like people get headaches when stressed etc. Same thing. I may also have some colon stuff going on. It is very hard to tell. I am going to do a colon test I hope soon to rule that out or fix something. But when I am peaceful and my physical therapy is flowing .. I was doing much better. Right now I am sick again. bad pain. On antibiotics for bladder infection again. But when I go to doctors and tell them I don't feel good they do a urine and tell me I'm fine, but with in a few days to a week I get a call from the doctor the the culture grew out and I was right.. I have a bladder infection. It sucks. Its painful and confusing and I am sick of meds. The say that if the uretha is being pulled by the ligaments and muscles being tight it can cause the uretha to stay open there fore causing infection to happen. Anything anyone has to add to help me I would be greatful.. anyone who my story helps.. I'm glad





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    Hi, I was diagnosed with cervical dystonia 13 years ago and have been having botox injections for the past 11 years. The injections are starting to wear off more quickly now,so i get the spasms more frequently and my neck will suddenly pull to the right every now. This can be embarassing especially in front of people I don't know and when I'm at work, etc. It makes a stressful situation even more stressful when you're conscious of it, tensed up and trying to hide the spasms so people don't notice! I defintely think hypnotherapy would help us deal with dystonia in that sense, and I would use it if the injections stopped working. Telling people about your condition also helps, so people are aware if you're having a bad day. I wish everyone luck with any treatment they undertake for this condition!





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    Hi my name is Sharon, I started noticing my neck slowly turning on its own shortly after the birth of my first child 24 yrs ago, but lived with it, it gradually got worse when I started work as a relief manager for a bookmakers, the driving and often stress with difficult customers seemed to aggravate it, then I was assaulted in 2012 which resulted in me being off work with depression and then having a hip replacement. It was after having the hip replacement that the spasms and pain really kicked in, the pain was so unbearable it made me cry then that made the spasms worse, I've always enjoyed a lively social life and loved walking my cocker spaniel Mollie, but all this stopped, I couldn't drive, if I walked anywhere I couldnt walk straight as I was constantly looking to the right and was accused of being drunk, so I just stayed in. CD has literally ruined my life, I've had to practically beg for benefits and at the end of last year I had to fight to keep my house as the mortgage had gone into arrears. I have now started to have botox injections and am looking a bit more positive about things, I still get the spasms etc, but the botox has certainly eased the pain considerably, luckily they kept my job open for me even though I am not paid and I have regular clinical assessments to see how I'm progressing, but I think may be they will have to let me go. I am dealing with things a bit better, I think because everything has gone downhill so fast it took time to properly sink in that my life has changed so dramatically, I've always been very independent even more so since my divorce 18 years ago, ive gone from caring for my 2 children and elderly disabled parents to now having to ask people to do things for me. I do sometimes have a good cry on my own and somehow that seems to help. Now I can actually even joke when my neck spasms along to the radio and me and the kids laugh together about it, money is very tight, I don't think I'm ever going to meet mr right now, hopefully I will work and drive again for the meantime I'm living each day and grateful its not life threatening.

    Hi Mike. I thought that I had been cured too as I didn't have any problems for over 10 years until last year. The 1st time I had it, it was in the right side of my sternocleidomastoid muscle. Now it's in my left trapezius. I am staying optimistic by continuing to do my stretching exercises - I think that over time the spasms of the affected muscle causes it to shorten. So I try to stretch it back again. For me, walking or standing makes spasms worse. It may sound strange, but I also practice walking, trying to keep my head straight by concentrating to relax the muscle affected. A bit like re training my brain. I've tried to change my lifestyle ie. leaving myself more time to get ready without rushing and avoiding stressful situations. And generally give myself 'me' time to relax. By the late afternoon or when I'm tired, spasms tend to be worse.I also have a memory foam pillow which helps for support. I use a heated wheat bag for pain. I don't take pain killers. They do nothing. Lying down tends to ease the pain. The cold weather doesn't help either as you tend to tense up. I got a nice snuggly snood for warmth. I also had a test today for metal toxicity. Apparently too much of this can cause dystonia. I'm thinking of having hypnotherapy, but not sure of any in Essex that deal with this condition. I hope this info helps.

    I'm 43, and I feel a big relieve knowing that is more people out there suffering from IBS. the difficult thing is as Dr christian said avoid stress, that is something very difficult to do, especially if you work in a hospital. I just had endoscopy 3 weeks ago, and the colonoscopy was total agony for me because I was in so much pain long before the procedure. the result was of extreme colonic spasms. my big problem is that,I can have flares up any time and anywhere as I work in a busy and heavy ward(rehabilitation for stroke) sometimes I cannot help my patients the way I want to or as much as I want to, because the pain is so severe. this is something that makes me feel very depressed, frustrated and upset. I would like to ask Dr Christian if is any treatment to help control the spasms. I would be very greatful for your advice.By the way, am a massive big fan of your program, I think the best way forward is to go out there and educate people about health issues, and also very useful for me as a healthcare professional.Siris.





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    Hi there! I too, am a nurse ( elderly care )and struggling to maintain my working life. Seems every day i experience pain, sometimes central abdo pain, but usually a dull ache at the base of ribs on the right hand side. I have been screened for gallstones - negative.This pain, at times, radiates through to my back or shoulder blades accompanied by nausea. I am so fed up, not knowing from one day to the next, how I am going to feel, but doctors are just not interested.

    Hello there! It's a relief to see that I'm not alone here with this condition! I was officially diagnosed this year by a neurologist. It was also interesting to read about diet. I haven't tried that yet but I will. It's a vicious circle because stress can trigger or exacerbate dystonia. But the stress is made worse by having the condition! The last few months I haven't wanted to go out socially. Even going to a supermarket is stressful. Walking makes my spasms worse. However, I found dancing almost relieves the spasms! My advice is to pace yourself - try not to do too much in one day and try to rest in between activities. I'm waiting for my second round of Botox (the 1st helped a little) and continuing my neck stretching exercises. I use sensory tricks a lot. I also try to avoid stressful situations where possible. Lying down with a wheat bag round my neck helps with my pain. I hope this helps.





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    Hi Natasha this sounds very familiar to my condition and you are right stress does make it worse. Have a look at my comment about how diet and anticholinergic medication (Trihexyphenidyl) have helped me significantly. I think you may benefit as your dystonia sounds very similar to mine. I too have had a lot of trouble socially and just going out in general. I also find dancing helpful as long as its not strenuous and walking makes spasms worse. I still have these troubles but significantly less after the alteration of my diet. I've had physio too but i didn't find this anywhere near as effective.

    No problem glad to help. I haven't completely stopped consuming these foods (apart from egg yolks as the choline level is too high) but i have significantly reduced my intake. I use the content chart to monitor my intake - it tells me the amount of milligrams are contained in these foods. Since milk, egg yolks, red meats etc have a higher amount I have reduced the amount I consume every day so that i don't exceed a total of (roughly) 200mg of choline daily. For example if I have chicken during the day I make sure its not too much and that I don't have a lot of milk nuts and cheese (for example) for the remainder of the day. Hope that makes sense. Its pretty amazing that you had a remission for 10 years - was there anything in particular that was helping you? I think you should definitely ask to be referred to a neurologist and ask for a higher dosage of botox - 50 units is tiny! Some medication/muscle relaxant should help too. I get 6 injections of botox into neck and shoulder muscles totalling around 1000 units. Used to be less but i asked my consultant for more because I was still suffering. I'm not part of any support groups as I'm not sure what else could be done to help I've tried pretty much everything except surgery, so I take it upon myself to be in control by being healthy and avoiding the consumption of too many acetylcholine-inducing foods.

    Please-in all honesty David-how much better are you after having hypnotherapy ? Does your neck not go into spasms anymore ?

    Does anyone else have a thyroid disorder as well as cervical dystonia? Botox nor Dysport work for me anymore. I've suffered with this for about 10 years now. Up until last November the Botox worked ok. I now try to do aerobics or yoga everyday otherwise I get so stiff I can barely move. I've tried chiropractic which relieved some pain but worsened the spasms.tried 6 sessions of accupunture did not seem to help at all. I take 2 tryhexaphen 2x per day and clonasapam 1tab 2x perday. I feel stoned a lot of the time. Ive tried thousands of $ of New Earth algea tabs because a salesman claims he had blastoma [eyelid spasms) and thisalgea cured him. I've spent between 300- 400 dollars per month for the past 4 month and other than taking away my PMS symptoms they have not helped either. I am now working with a physical-therapist. I am 48 and have a 11 and 13 year old daughter. I pray for a cure but am greatful for everday that I can move around and drive my children to school. Bless you all and stay strong. Remember everything happens for a reason.





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    I had anal fissure after childbirth. After 2 years two ing and fro ing I was referred to a ccholeectal surgeon. There is a new treatment unlicensed called neozem It's a heart attack cream. Don't panic.... The cream goes in ur an us and forces the blood to the area to speed up healing im 5 days in to it and thank god. My life became unbearable. I'd also had severe spasms in my anal sphincter muscle that needs botox this us called something fugax. The botox releases the muscle from spasms it effectively paralyses it. There is help insist on the neozem cream. It's new and it's £178.00 a small tube but you pay 8.50 nhs price. I'm assuming why most of us have been fobbed off with the cheap pointless cream that causes horrendous headaches. Insist the new cream my life is back!! No more waking up in agony sat on floor pushing to stop the pain. No more fainting with it and all A ok for now. All because I insisted something had better be done fast or im suing the hospital.

    Im 34 and for the past 3 years after orgasm i go into an spasms/jolts that i can not control if i do they get worse. this can last between 30 sec n 5 min my voice stutters. do you have any advice ???





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    I have had uncontrolled spasms in my eyes from being very young. I can sometimes feel them happening, but other times I can't. I am now 28, and was diagnosed with epilepsy when I was 20. Do you think there is any connection?





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    hi susan,i really don,t know if this is connected,but if i was you i would ask to be referred to a specialist,i was very pushy because i knew this was definately not just an allergy,it,s your body so don,t be fobbed off. i have now had botox injections in my eye area and lead 100% better life than 2 weeks ago, although i,m no longer the old looking katy,i,m happy that i can see and work properly again. all the best, hope you get some answers,katy

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