DYSTONIA & CRPS

Many people with CRPS have movement disorders.
In this video I will discuss what is dystonia, how does someone get dystonia, what are the different types of dystonia, the possible relationship between dystonia & CRPS, and treatments used for dystonia.
Do you have CRPS & dystonia? Let me know in the comments below, and if you do....please feel free to let everyone know any other useful information concerning this topic.
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[@susanmccormick4627]

I have had CRPS since I was 39. I’m 60 now and have had most all of these. Both feet and legs. Both hands, face and neck. I have went blind. Back. For many years I wake up every night with both tendons pulling so hard I cannot breathe. They are barley hanging on with multiple large ruptures in both. Since the opioid scare they have reduced my pain meds to 5 mg every other day. My life has been severely impacted to staying alone for many years now.

[@TheCRPSNetwork]

Susan, I am so sorry to hear this. You are a true warrior...over 20 years with CRPS. I am sure you have tried many different treatments for your dystonia. Have you found any that have worked better than others? Anything else that helps? I am sorry your life has been severely impacted. The CRPS community and myself, are always here for you. Possibly you may have a CRPS support group in your area that can help you out at times so you don't feel so alone?

[@susanmccormick4627]

The CRPS Network no CRPS group here. You are correct, I have tried many, many different treatments. The only thing that helps, proper nutrition. Super nutritious foods. Non GMO, no MSG, organic as I can get. From my research I found after WW1 this was called causalgia ( Greek for shining red hot). What happened to the men in WW1?. Why are children getting it now? A few suspects. This also resembles EMF poisoning. This could also be vaccine related.

[@stephanienorizsan6679]

Thank your for all the information that you do on your videos, they are very informative. I have had CRP S for about 2 and a 1/2 years which has actually gone un diagnosed and now I believe that I have distonia in both of my wrists and now it's happening in my left foot. Not many doctors in my area that know about this disease or even how to treat it, so I'm certainly at a disadvantage here. Keep up the good work you're doing great!!!

[@TheCRPSNetwork]

Thank you! I'm sorry to hear that you believe you have CRPS that is undiagnosed and now dystonia. Do you mind me asking where you live (what state)? Maybe I can find a referral for you that has some knowledge of CRPS.

[@stephanienorizsan6679]

@@TheCRPSNetwork Upstate NY Saratoga County. Thank you so much

[@GARTHBOOTS]

Thank-you this helped me a lot.I have full-body from brain,eye's.nose,mouth,throat.neck,entire torso with bone pain ,severe swelling,movement disorder where my limb's twist and get stuck and is very hard to get them to stop.I have it everywhere and its hell.I feel like dry ice was put in my entire body. Going to try ketimine it's the only thing I haven't tried .so hoping for relief soon. It will be 19 years soon. What a birthday gift right. Lol .Thank-you you answered a lot of thing's for me.I love all your video's. You do a great job!!

[@TheCRPSNetwork]

Thank you!! I am so sorry to hear you are suffering so much and so body-wide. I am very excited for you getting to try ketamine. I will pray that it was as helpful for you as it was for me. I remember the first time I stepped out of the hospital bed and applied pressure to my foot without the agonizing pain I had been having...it was amazing. Another tool I have recently discovered that has been helping so much, even more so than the infusions. It's called BEMER. it stands for bio-electric magnetic energy. It opens microvessels and regulates blood flow. It's completely natural. I plan to do a video soon about it. Typically there are distributors that will rent you a machine or individual sessions (about $25 - $45 per session...which lasts 8-20 minutes). I would google BEMER distributor and your hometown and if you can locate someone close by, I highly recommend giving it a shot. Maybe try a couple of sessions.

[@GARTHBOOTS]

Thank-you!

[@GARTHBOOTS]

@@TheCRPSNetwork Ok Thank-you for the information. I never heard of it but I will check it out. I'm sorry your in pain with this as well.I hope you get well soon.I really feel for other's who go through this life time of hell. Something's gotta give soon. I hope to get through everyday the best I can. Be well.

[@Wanda247pain]

I am a rare bird in the CRPS community. By that I mean that my Dystonia onset was before the CRPS came along. My last neurologist appointment was years ago because treatment is no longer truly possible sadly enough. I do take some medications for the Dystonia that is constant present (Baclofen and midazolam, both in quite a high dosage) but I also have paroxymal attacks mostly triggered by sound or flickering lights that are treated with a midazolam via a nasal spray and if that doesn't work it's on with intramuscular injections of -in the following order- clonazepam, diazepam, midazolam (higher dosage than via the nasal spray) and if that still doesn't work it's of the hospital for infusions of either clonazepam (again), lorazepam, midazolam (again). And paroxymal attacks that aren't triggered can't be treated unfortunately, so in that case I just have to wait for it to go away again which can take a very long time but is mostly minutes or a couple of hours. The Generalized Dystonia has been successfully treated in the past with a intrathecal baclofen pump. But after only 4 years it all came to a grinding halt when my body didn't respond to it any longer and because the pump started to give me extra pain by pressing both to my ribs and my pelvic region we decided to remove it. So I was of baclofen for over 7 years before we started again but this time only in pill form. Lately I have noticed that the baclofen has again started to work less so my doc and I need to start to think about another option again. Deep Brain Stimulation (DBS) is no option because it would most likely end up in an infection in my brain and that's even worse than having both Dystonia and CRPS. I'm 37 now and have been living with CRPS for exactly 30 years this past october and the full 37 years with Dystonia. I take a whole lot of medications every day just to make it bearable but it barely is... BTW my CRPS is generalized as well, every single cell in my body seems to scream from pain at times. Especially after a few severe attacks of the Dystonia in a time frame of a few hours. I am fully bedridden thanks to the Dystonia and CRPS mixed with the hypermobility type of EDS combined and the EDS comes with its own slough of comorbidities as does the CRPS so it's a guessing game which caused what. So we stopped.

[@donna1390]

I have both.

[@dorenehendricks6627]

I have had this for 17 years and pain is unbearable no meds help.

[@TheCRPSNetwork]

Dorene, I'm sorry to hear you have been living with this disease for so long. Have you tried Ketamine infusions? Or BEMER? Stay hopeful! Since CRPS became distinguished a couple of years ago as a rare disease, that opens up funding for research....which exactly what has been happening. I am hopeful that researches will find something to help us very soon ;-)

[@WoundedThrivers]

Auto accident, 22 years ago. Brain injury, Dystonia, CRPS, and the list goes on. There are ways to treat this, but most don't. Mine went into a small remission where it wasn't so bad. Then a severe doctor's mistake caused everything I had overcome to come back. After 5 years, the treatments are getting less. But I have lost a lot of the prime of life!

[@WoundedThrivers]

As we age, (PLEASE RESEARCH PUBMED EVERYTHING I SAY) we produce less Glutathione or N. Oxide. This leads to aging. Many years ago, a company (whose name is also in PubMed) has done the research - just like all other companies. This is a promising nutrient. This company has far exceeded all others so far. It has peer reviews and many patents. The blood work shows those with disease USUALLY do very well. 22 years ago, I mentioned my history. It's much worse than that, which I left out. My doc was calm and felt even with the gene, and everything that happened, I would not get Alzheimer's. 60 years old and a SPECT scan proved she was right. There are pages and pages of research showing bodies that have taken these nutrients and in a few months have the "innerds" of a much younger person. I have seen amazing things, and this is one I am still shocked over. I can't help but at least mention, because everyone has the same choices I did and while no guarantees, I'm thankful.

[@joywarrior436]

Jennifer, welcome back! I am SO thrilled to see a new video. Can’t wait to watch it! I so appreciate the information you share with us and it’s just comforting to see you have CRPS and still are living life successfully. I would be very interested in a video on the Bemer. I am familiar with it and one of my main symptoms is my micro vascular system clamps down and my foot gets like a block of ice. I’ve always wondered if it really worked? Thank you!

[@TheCRPSNetwork]

Joy, awe...thank you!!! I should be back with more videos. I have one that I recorded last week that I am super excited about, concerning HEVR (heartbeat enhanced virtual reality) for the treatment of CRPS. And for sure I will do a video about the BEMER soon. I did one before but had to remove it because the company is pretty particular about what claims you can make with it. Since it hasn't been approved by the FDA for treatment of CRPS, they won't allow me to say that it helps me with CRPS. I can say that it helps me with "pain". Anyways, I don't need to explain to you guys all my symptoms, you know what they are and I will tell you that I get more relief from the BEMER than any other treatment I have tried so far. I purchased my own. Send me a message and I can locate a distributor in your area. If you are interested, you can either try out a couple sessions...which they will usually do an 8-20min session for about $25-$40. Or you can purchase one and you have 30 days to return it and get your money back. Less than .02% of people return them.

[@joywarrior436]

@@TheCRPSNetwork Jennifer, I just read your message. That’s great information about the BEMER! I live in Northern California, Sacramento area. I didn’t know they did trials. Do you find it’s more helpful in the winter or does it still help you in the summer? I was skeptical because none of my doctors have even heard of it - not even a vascular specialist who is well regarded. But knowing it helped you is huge! I look forward to your video in the future and any studies you recommend.

[@isabelakatrina7385]

Anyone from the UK ? My partner has been suffering with crps since having his hernia surgery nearly 12 years ago. He is bed bound because of this,his pain is so intense he suffers with pain related blackouts, it has been heartbreaking trying to deal with his condition and no treatment has worked over the years.

[@sweetness34km]

26 years

[@tracyolive6710]

A car crashed into my left leg and I was left with CRPS2 and dystonia in 2015.

[@TheCRPSNetwork]

Tracy, I am sorry to hear that. Is there anything that helps you with the dystonia?

[@simonemellegers8401]

I went to hospital to have CRPS diagnosed, they said it was not although I am sure that I have CRPS. Over the phone the doctor said I should have pain in the night, which I have not. Is that a obliged symptom?

[@TheCRPSNetwork]

Simone, it doesn't have to be, however a lot of people that have CRPS, including myself, have heightened pain in the evening. I believe it's because we've been active during the day and at night, especially when you're going to bed, you have less to concentrate on so you tend to focus on the pain more. I have another video where I discuss how doctors diagnose CRPS kzbin.info/www/bejne/kJjXhoqIo7KDi9U Nowhere in the criteria is mentioned about having pain in the evenings.

[@simonemellegers8401]

thank you for your answer, On May 7 I woke up with a left arm that did not work at all, while right ankle is injured 5 years ago. Left arm hurts now and then more and also near the evening. I studied Shiatsu and do everything to stimulize from the outside working on points, also Qi Gong. While ago I went to a movement specialist he gave me two exercises, one is to open the hips while standing on one leg, the other one bended behind you on a chair, visualising that the leg on the chair is in the air. The other one is arms at the side of a doorpost, hanging forward, arms relatively down, thinking the arms are up in the sky like diving in a swimmingpool. It opens up the chest and hartarea. The idea is to influence the brain. Ever heard of that? It does something to me, hope it will help. You have a blueprint in your body how it ever was and try to go back to this. What do you think?

[@sweetness34km]

I have them all over I've used 3 of the meds two work the best i favor unfathomable pain also RSD is been classified as a rare disease for a lot longer than a couple years it's number one in the most painful disease number 7 and the rarest and it's number 7 and the most terrific the rarest in the most horrific and we're listed as 7 and 8 and I don't remember which ones were which but does it really matter in the top 10 in trees category is number one in the most painful people don't care about us they would rather let us die

[@TheCRPSNetwork]

Which meds ended up working best for you?

[@butterflybeatles]

I wish so many people wouldn't apologize for pronouncing things wrong. It is a waste of time and doesn't add anything. Just pronounce it right and don't say sorry. The words are not that hard. They look phonetic, to me. If the English language had not disposed of the hyphen the words would be easier to figure out.