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THR Nerve problems

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Hi @Legin! I have an unrelated question for you. More to do with your CRPS. You recently had a round of Calcitonin? (Sp) injections. I have an aunt who has RSD (the former term for the now CRPS). She has tried many treatments including the Ketamine but to no avail. Xanax, gabapentin and I don't know what all else she takes, but she is in extreme pain -always. Can you tell me more about the injections you had? I see you are in the US, so they are FDA approved I am assuming... Any info you can provide would be great. It's nice to be able to get a first hand experience/review of a treatment. Thank you so much in advance.


Cheryl

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Well I am praying for ya legin... Good luck to ya.


FaithMitchmommy
PKR December.1,2014
TKREV MARCH.2,2015
 
@Legin It used to be that your GP could prescribe chiropody services. It might be worth asking about as your feet need TLC too.
Hope you have had a better day today.
 
Hi @Legin so I have been reading your thread ( I don't' comment much but I do follow your journey). I can't help but think that you and I had our replacements ( my first one) done around the same time last September and what different roads you and I have travelled! Mine has been so uneventful and you have had such a struggle. Every time I make an entry on my recovery thread I always think of all the problems you are dealing with and I feel guilty for such an easy time I have had. I guess what I'm trying to say is you make me realize, everyday how thankful I am. I truly wish that they will be able to figure out something to help you.
 
Oh ty @NuMe2014 its just one of those things. I genuinely feel happy for all of the as you put it uneventful recoveries. There are things about what has and is happening to me that are difficult both in dealing with the actual physicality ie 24/7 pain and restrictions on movement and capabilities but what goes on in the head. Being honest its what goes on in the head that is the hardest to cope with. Having been the person who always was there for people both physically and emotionally its difficult to not be able to do the physical help and why also I think I'm sooooo independent to the point my wife's regular phrase is its no wonder I'm grey. Anyway I have prattled on for enough, really good to hear from you tho I bet weather is a tad better now.

Legin THR Sep 14
 
@Legin
It's ok to let others help you for a change. It is a very special way to show your love and friendship by accepting help. That's harder than giving it I know. It allows your loved ones to make a difference. Hang in there ~you are in my thoughts and I will pray for answers for your issues so that you can look for pain free days!


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@Cleifeste pls accept my apologies I somehow missed your post. Sheesh first the hair then the brain. OK I'm in Scotland so not sure if Calcitonin is FDA approved. I had five injections, the product is a derivative of salmon and it has shown some effect. With me the swelling was reduced and pain also but only minimally. I really feel for your aunt. Next week I'm starting specialised PT as another part of the syndrome is joint lack of movement and activity is paramount. I will post on the #CRPS title as and when I have the exercises. Again sorry for missing post.

Legin THR Sep 14
 
Again TY all for kind words. After thinking I had knocked insomnia on the head the past week has been tough, the problem I'm sure is inactivity. Walking is a major problem and that was a major source of activity for me. Soooo looking forward to physio to get ideas. I could increase my Nortipyoline, sp? but it makes me groggy the next day oooops I take this at night as it has a calming infl on pain and me. #CRPS

Legin THR Sep 14
 
Hi @Legin. Sorry to hear about your sleep problems reappearing. Those nights can be so long. I really hope your physio can suggest something to help you with the activity levels. Would swimming or water therapy help at all do you think? Just a suggestion. Hope you don't mind? But you've probably thought of it already.
Sending you a hug from Yorkshire
 
I think you're right about inactivity @Legin. Just going outside, having my hair done and getting generally tidy was exhausting. I slept for well over an hour yesterday. What I'm trying to say was the little bit of extra activity did knock me out somewhat. So I agree with your thinking. Is there someone who could drive you somewhere nice for a while. Just a change of scenery.
 
Hiya Snaperooo good to hear from you. Water could be good esp as little foot contact to ground. I haven't used swimming pool since a mother pulled her child away from me when she saw my psoriasis on my arms. Silly I know and it is all in the head but I don't want same again for me or the mother. I'm a daft old Levin as a cartoon character said tho his name was Hector.

Legin THR Sep 14
 
Insomnia is horrible ..... I can never understand why we get it. Sometimes I might be worried about something but still sleep well, other times have a series of sleepless nights. Not good! I hope it sorts itself out for you soon @Legin. Sorry to hear about your swimming pool experience. Enough to put anyone off swimming pools. Have you looked on Youtube at "Tai Chi for Arthritis"? by Paul Lam. When my hip was so bad I could not do any exercise I found this useful. It can even be done sitting down if balance hinders standing up! On the recording there is a man in a wheelchair doing it.

Oh dear we all want to make like suggestions like this as we all want you to "get better" So hope not offending you with simple suggestions! What is evident though is that you have a lovely stream of "followers" who really care about you. "Daft old legin/Hector" you are appreciated by many!
 
I felt really sad when I read that. My very good friend has a form of psoriasis really badly and it's grim. He has a heart problem too and the swimming was good for him as he was only able to take very gentle exercise but I know he had similar problems. People are just so insensitive to others. What a thoughtless woman! Could you not ask at your local pool if they have times that are quiet and you could put your toe in the water so to speak? Early mornings are sometimes fairly good. The other solution might be a swimming top - you know like the ones kids wear in the sun with arms. Quite common for adults too now.
One here https://www.amazon.co.uk/Mens-Tuga-Long-Sleeve-Shirt/dp/B00CH2L300/?tag=ate362da-21 That's what I was thinking of.

We are all rooting for you on here.
 
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