Is anyone else coping with these? Had horrendous pain on left side of neck for the last week from ear down front muscle. I couldn't even sit up. Terrible headaches, no energy and fatigue. At the same time my neck started snapping and clicking. Also Dysphagia has got worse.
X-rays last year showed Osteoarthritis in hands and hip but no further action needed. Prescribed Naproxen and Movelat Gel for pain. Eye drops for Dry Eye as they have been very sore and blurred vision.
Could Osteoarthritis now have progressed to my neck? I've not seen my GP as not been out of the house for a week.
Taking Clonanazepan for Dystonia and told nothing more can be done as Botox injections had to be stopped because of side effects. Also thickened powder for fluids as drinking and eating is just a nightmare. Also got Oxygen at home as breathing is compromised at times.
Always been a strong fighter for so long and rather help others, but sadly I now have to admit this is really getting me down and not sure where to turn for help or if there is any? ...............
Thank you for listening and for any advice.
Written by
Peacelovelight
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Dystonia does affect my eating,swallowing at times.Breathing is difficult also during a Dystonic Storm.
Listen...this illness does suck more times than not..I get that n so does my posts prove that,But..u said ur a strong fighter n u can do it.We cant let this illness destroy us...
There is a Dytonia Bulletin Board online that u can speak with others and post..also the Dystonia Society has a website where u can read of all the latest news in research,find docs,and get info sent to u about Dystonia(for family or friends who don't understand Dystonia.Also..recently..they had a promotion for there t-shirts $4 plus shipping..they pick.
Im gonna wear my tshirt and spread awareness.
Plus u have everyone here in the same/similar spot as u.Its about holding anothers hand as we walk thru this illness together We can all share what helps us/and what doesn't.Educating urself makes it easier to deal with this illness.
We can all do this!!!! and we can help each other on those not so great days!!!!
before I knew what was wrong with my neck, the right side of it got really bad. I had trouble swallowing and my voice would sometimes go out. the pain was horrific. I saw you're taking clonazepam, but it's not the only medication. perhaps you could try another? I took clonazepam and it helped some, then was put on baclofen. that worked for a couple of years, but I just started taking a medication that, coupled with stretches, takes away all of the neck pain and my spasms have lessened. just a thought. stay strong.
I thought i would say hello & see how you are doing - I’ve not been on here long but have met a few lovely people who have Dystonia! Just sending some luv & light 💡 your way because you have been there for others x if you would like to chat anytime then I’m here ok -it’s v v difficult I know x keep safe
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We can all share what helps us/and what doesn't.Educating urself makes it easier to deal with this illness.
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