Dystonia, PD and peripheral neuropathy, tips on pain relief please


#1

Struggling now to cope with the pain. Some days cannot walk more than a few steps.  loss of muscle means leg splint keeps being suggested but dystonia means foot twists to side and would be painful to restrict that movement.

I have had pd since 2008.

Prescribed Gabapentine helping, with electric type pains but back  pain persistent alongside dystonia/cramping pains mostly in feet but also in hands. Tried Naproxen but no effect on back, leg, hand pain.

Physio started today, as last sessions no improvement, any tips welcome. Live on my own so very worried.

Thankyou


#2

Hi Teehee, 

Sorry to hear you're struggling at the mo. I can only relate to the stiffness in my hands and feet. I try stretching and exercise but feel I need some more meds at next appointment. Keep pushing it back but might have to give in. 

Sorry not much help. Hopefully wiser ones will answer. Take care. 

DivineR (formerly) 


#3

Thanks Divine one, thought you escaped.  On good days do stretching, yoga type exercises they do help but maybe like you need to take a leap of faith into meds. on 4mg ropinerole now and started sinemet smallest dose twice a day,  see dr in next few weeks so maybe not fight against the increase in meds.

Hope you managing ok, lovely to hear from you, take care x 


#4

All good here. Tech issues so reregistered. 

I'm thinking siminet too. Well see, I go back and forth. 

Good days and bad, like everyone. 


#5

Dear TeeHee,
I really don’t know what to say, except you are very brave and I find it remarkable how you retain your humour.
I’m having a great deal of problems with very painful Dystonia, but this peripheral neuropathy sounds horrendous on top of PD.
Struggling with using keyboard so hence short message.
Thinking of you.
Jules77


#6

Jules 77,

I am so sorry you are still battling dystonia and hope you get some respite soon.

Your message gave me a boost. I hope that whilst you are  struggling to type that creative brain of yours is still whirling away.  

I am really looking forward to your next poem, on creative corner.

TH  x 

 


#7

Hello TeeHee,

so sorry to hear you are suffering so badly, I agree with Jules 77 you are so brave I don't know how you keep your chin up,

My sister has had dystonia for many years  mostly in her neck she now hows Botox injections every 3 months at her local hospital it helps to keep her pain free for that time and stops her head from resting on her shoulder.

The only other things I can think of that might help the pain is Reflexology and Acupuncture I know some CCG's do it on NHS but not all.

Take care  C xx


#8

Thanks Clemmo will look at what you suggested, back in 2 wks to see physio again, she did mention some new scheme where I could get support at a local gym.  I was going to pay a personal trainer to help and advise but up to yet not found one with necessary knowledge of pd. Fingers crossed a referral will mean a bit of support to get me motivated again and hopefully build that muscle back, will look at acupuncture first though as movements bit painfull at moment, think i just hit a bad spell as we all do.  

Hope you ok, Clemmo you have a lot to deal with and you cope very well x

 


#9

Hi TH

Sorry, no advice, but thinking of you.

Cyber hugs

S


#10

Thanks Supa,

hope you doing ok. 

Cyber hug for you too x


#11

Hi, TeeHee,

I had peripheral neuropathy before developing any PD symptoms. No specific cause was established. The symptoms were motor, with muscle weakness, and severe pins and needles and pain in the feet. Gabapentin helped, but the thing that really gave relief was a TENS machine. They aren't expensive, around £30. Get a dual channel, and follow the instructions for placing the electrodes. It's far and away the best thing I've ever bought, and nerve pain is the ideal job for TENS. They're easy to find in Boots or Superdrug and on Amazon. Most are wearable, so you can carry on as normal while you are using it.


#12

Thanks for advice, never heard of tens machine and at that price for a reduction in pain bargain.  Good that it is portable as well. 

Do you think if I stuck the electrodes on my head it would be like a DIY  not so deep brain stimulation? (only joking)

I do appreciate the help.

Hope you ok too.


#13

So sorry to hear you're struggling dear TeeHee. Pain, weakness and fatigue had kept me away for such a long time and I was so sad to see this as the first I read today.  A TENS machine is is a good suggestion. I used one several years back for lower back pain. 

I pray that your symptoms ease my dear xx


#14

Great to see you back joan of ark, your good mate JP only mentioned you the other day.

Sometimes we hit a bad spell and we are lucky to be able to bounce back.

Take Care J of A xx


#15

Hi TeeHee,

Just wondered how you are. Has the Dystonia eased with change in drugs? Have you tried the TENS machine?

I'm also struggling with the wretched Dystonia. Waiting to go on Opicapone.

Am staying off Creative Corner for a while. Hope Lin is back soon.

Best wishes,

Jules77


#16

Jules 

Hope you coping ok.  I am doing well on Gabapentin for the pain and it seems to have the added bonus of reducing my tremor ? That's the right leg sorted now, back pain still on the go but managing with that need more origami sorry yoga lessons. GP suggested steroid injection for right leg as different cause for pain FABULOUS worked a treat. Having physio 1hr every two weeks as walking gone a bit haywire!  

Jules really miss your posts, I am rather fond of you,  so please let me know how you are x


#17

It would appear I have 2 right legs, no wonder I cannot walk properly !  left leg with electrical type pains.   Read an article on Gabapentin commenting on reduction of tremor being a possible outcome of using this medication.


#18

Hi TeeHee,

So good to have you back. Am in Norfolk this weekend for big family reunion.

so just to say the Opicapone seems to be reducing my switch-off times, significantly. 

The Gabapentin for sounds encouraging for pain, hope it works for tremor. You are a fighter.

will catch up when I get home.

Jules77 x


#19

Great News, enjoy Norfolk. x

Look forward to catching up....