Kamlesh

Neurostimulator

22 posts in this topic

I have mixed feelings about the failure. It was causing severe vibrations and was not masking pain. On Tuesday, 12/13/2011, Neurostimulator is taken out.

 

What is causing my pain? My doctors checked all medications, any medications like statin are removed; there is not muscular degeneration.

It is back to two remaining options:

  1. Keeping on trying medications (opened a new thread). I will try one in couple of days
  2. Try to live with the pain. I am not sure I am ready to retire yet, but might be forced to do it.

 

Thank you everyone!


Kind regards,

 

Kamlesh

 

 

Share this post


Link to post
Share on other sites

Kamlesh,

Just wondering, how long have you been off the statin? I was having terrible leg pain and took myself off it and it took 2-3 weeks for me to really feel the difference.

 

miocean


ISN Artist

Share this post


Link to post
Share on other sites

Hi Miocean,

I am off statins as well as Cochicine which my doctor prescribed to help with Scleroderma, for over 4 months now.

 

All,

Thank you for your love and kind words.

Despite being on maximum dosage of one of the medications for Neuropathy, my pain level continues to rise.

I have started an anti-seizure medication last week.

 

Sheryl,

I love to be in nature and as soon as I feel good, I rush out for a hike.

My doctors also suggested that building leg muscles will have good benefits for Neuropathy pain.

 

Thank you all and lots of love and hugs.


Kind regards,

 

Kamlesh

 

 

Share this post


Link to post
Share on other sites

Hi Kamlesh,

 

I am also on anti-seizure medication for pain. I had to very gradually increase the dosage, to make sure I tolerated it okay, and also to find the level(s) where it worked. Anyway, so far, it has worked very good for me, in combination with many other things like physical therapy and epidurals, plus pacing myself very carefully, etc.

 

I am impressed with your love of nature. I share that interest, although you are far more enthusiastic about it!

 

Like many of us, I believe strongly in things that we often take for granted before illness, such as the absolute importance of things like nature, serenity, beautiful music, using our creativity, and becoming very immersed in anything we love. It sure doesn't solve or cure anything, but it makes our time and lives more meaningful and happier and thus we are better able to hold up emotionally to the demands of illness that require extraordinary grace and determination for each of us to navigate each day.

 

Sometimes, its like the old (sick) golf joke about hit the ball and drag Harry, except for us, it is, hit the ball and drag scleroderma!

 

So, two thumbs up for your love of nature and I hope the new med helps you enjoy the outdoors a little bit more.

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Hi Shelley and all other friends,

I started one of the anti-seizure medications early December and I am already on maximum recommended dose by my Pain Management doctor. I have increased the dose every week. I have few days when my pain level stays in the range of 4-5, but still majority of days I'm in extreme pain.

I am not sure, if I have any other choice other than trying 7-8 anti-seizure medications one at a time for 6-8 weeks.

 

It is long and difficult road ahead.

 

I am not feeling good with the option for implanting drug delivery pain to deliver drugs directly to spinal cord after failure of Neurostimulator trial.


Kind regards,

 

Kamlesh

 

 

Share this post


Link to post
Share on other sites

Hi Kamlesh,

 

I'm sorry to hear that your medications have only given you a small amount of pain relief.

 

I do hope things will improve for you very soon.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now