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TOPIC: Cervical Dystonia arm tremour/spams

Cervical Dystonia arm tremour/spams 11 months 21 hours ago #4115

  • LM75
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Hi
I have had this for six years and is getting worse. I struggle to eat,drink,type,write...all the things you do with your arms! I had to stop work about a 18 months ago and worry about any social events. I have botox injections in my neck and take medication. Does anyone else have the same and is there anything that can help with your arms? I feel worthless because i struggle to do the simplest things in life. My neurologists isnt the most helpful.

Thankyou

Lisa
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Cervical Dystonia arm tremour/spams 10 months 3 weeks ago #4117

  • jude62
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Hi, yes I have the same ,have had it over 10 years and has gradually got worse.I had botox but it did nothing except making my arms even weaker,I have been put on many different medication and am now taking simnet which is helping .I am struggling to cope at work,but am to frightened of the consequences of leaving.It is awful trying to cope with the pain ,embarresment and exhaustion I am also not happy with the neurologist,it is a struggle constantly
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Cervical Dystonia arm tremour/spams 10 months 3 weeks ago #4118

  • LM75
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Really sorry to hear you are struggling, I had to give up work 18 months ago as it had got so bad i couldn't write, I was a picture framer for 15 years and I couldn't go on working with glass etc. My GP told me to take a break as the stress made it worse. Have you thought about stopping work? I know its difficult because of financial reasons but i have felt better since i did as such a relief not having to struggle and try to hide it everyday. I had one lot of botox in my arm which made my fingers all floppy and my neurologist wont do it again! I am trying dopamine at the moment which has helped a little. Do you get any side effects from the simnet? Is it effective? Do you go to any support groups or councilling? I am due to have councilling next month and a course of acupunture on the nhs as i have found this helpful in the past.
Lisa
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Cervical Dystonia arm tremour/spams 10 months 3 weeks ago #4119

  • Jos
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Hello everyone, Lisa I hope you are feeling better and are more hopeful. I totally relate to to useless feeling---makes me cry to see you say it, too.

I came to leave a little of my experience with the hopes of returning the help people have given me about their own experiences.
Just to briefly say, I've had strange muscle spasms since menstruation began when I was 13, I'm 50 now. I was in an accident in my early twenties with a collapsed lung and broken clavical. Photos from that time show me with my head leaning slightly to one side. I then proceeded to suffer from spastic colon for approximately 9 years with finally getting steady relief from shiatsu massage(bless the massage therapist!). Diagnosed with fibromyalgia, also, and with the help of other physical therapists, I've improved breathing and relaxation by meditating on my abdomine and entire body which helps tremendously.

The cervical dystonia began being noticeable about 8 years ago when I simultaneously was diagnosed with hypothyroid. About a year ago, it was found due to LLDS(one leg longer than the other), scoliosis was beginning to occur after a lifetime of walking with one leg longer than the other.

The cervical spasm got worse an worse over these eight years with my going from specialist to specialist not helping a whole lot, with a little relief here and there from physical therapists and some massage.

I self diagnosed the cervical dystonia. I know that's a no no(!) I apologize in advance, :-)The symptoms were spot on ; and strikingly for me, the specific symptom of how gently touching my head or my chin helps to keep my head in the upright position. But since my self diagnosis, I've been finally finding relief. It's come from reflecting and observing over many years as well, but I have discovered, the source of the extreme discomfort where my head gets stuck completely to one side which causes extreme embrassment and anxiety as well as pain at times: the source is my lung---which collapsed in that car crash many years ago---not filling to full capacity. Fortunately, I can make myself fill it to full capacity(almost anyway)through breathing in four seconds through my nose and four seconds out through pursed lips. This is litterally pushing my lung to full capacity and vuola, my head comes back to almost complete alignment. Because I feel lightened and energy suddenly, I feel more positive, and the spasm is lessoned to almost half the severity, just from expanding this one lung.

If you've been in a car accident, I believe scar tissue can cause discomfort and pulling to one side. Natural creams for topical scars can help to stretch back the skin helping with that sensation and getting our equilibrium back.

So, I tell this just in case people with the spastic torticollis or cervical dystonia, have had either problems with their lungs, scoliosis, LLD, spastic colon, hypothyroid(which is almost unnoticeable with medicine), along with nutrition, exercise(I do gentle relaxation exercises always with the scope of relaxedly centering myself to find my equlibrium---osteopathy helped with this, too). And most of all, don't lose hope. Your body is always naturally looking for symmetry and equilibrium. It's just a matter of self reflection, observation of ourselves and honesty of our feelings and trying to help our best friend get back her equilibrium.
Last Edit: 10 months 2 weeks ago by Jos. Reason: grammar
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Cervical Dystonia arm tremour/spams 10 months 2 weeks ago #4120

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Hi Lisa,
I know exactly what you're going through, I struggle with all those basic things too, I'd add putting socks and shoes on and getting dressed. Talk about demoralizing.

Please glance at my other post. I think it might be a little help in dealing with discomfort and possibly another clue on how to find relief and help.

If it's posture issues and partly a matter of realigning, I reccommend gentle relaxation exercise, all with the goal of getting yourself to relax through gentle movement and most importantly, breathing properly. It seriously took me a year of doing this(slacking off for one thing!)until I finally was able to breathe properly. A physical therapist taught me how. It's almost a matter of slowing thoughts down to following and listening to your body, meditating on positivity, and in my case giving up my self conscious and judgemental view of my stomach sticking out. That enabled me to strengthen my stomach muscles with the objective of breathing properly and stimulating the central nervous system which is essential to immunity and healing. Breathing to full capacity is like a constant massage on the diaphragm and I've gotten so I appreciate my stomach sticking out!( not an easy thing to get over for vanity's sake).

So much of what I discovered was how stressed I was about everything it seemed. So part of meditating is acknowledging I'm stressed, reflecting on what the stress is and how to either avoid it, or concentrate on breathing imagining letting it go and leaving me. It's similar to forgiveness: if you need to forgive yourself or others it's a good release of stress as well.

I can't say anything about botox or the neurological medicines some use because I haven't used them. But, the first thing, is to do whatever is necessary to alleviate pain because that can be the biggest stresser as well as fastest way to get sick with a myriad of other maladies. I find applying heat helps relieve pain and stress. For immediate relief, tapping with two fingers on my chin helps to forget the pain giving a much needed pause from it. It sometimes helps to also tap the middle of my my forehead and the painful side of my neck and it's something you can do at work without being too conspicuous! For my arms sitting with pillows to prop them up like a comfy arm chair helps alleviate fatigue, but I'd try tapping the back of your neck in that case, for a minute at a time, firmly and steadily.

Anyway, I hope you've gotten help and if you want to chat about it, I'd love to. ;-)
Last Edit: 10 months 2 weeks ago by Jos. Reason: grammar and adding info.
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Cervical Dystonia arm tremour/spams 10 months 1 week ago #4122

  • LM75
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Hi Jos
Thankyou so much for telling me your experiences of your dystonia, it really does make me feel better being able to talk to other people who are going through the same problems as me. I do exactly the same as you and have to keep touching the side of my face to get it to return back to a straight position, luckily i have long hair and I tend to play with that so it's not too obvious. I go to pilates which i find helps with my posture and does relax me.
I would like to get back to work and have decided to change direction and work with animals as they're not as stressful as people! I volunteer one day a week at a donkey sanctuary which i love.
I have ordered flat arm weights from the US which I'm hoping will help with the shaking/spasms in my arms so I'm able to write and type and write a bit better.
As you say, it's a case of finding your equilibrium and I think it takes time and a process of elimination.
Hopefully I'm getting there.
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