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Nerve pain after almost 10 years Nerve pain after almost 10 years

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  #1  
Unread 04-14-2004, 07:29 AM
Nerve pain after almost 10 years

Hi all.

I was going through a hysterectomy in 1995 after they discovered
that I had a cancer tumor growing towards the back of my spine.
They removed most things...uterus, tubes, cervix, a part of my
vagina, lots of tissue and glands, and just to prevent confusion
in the future they also decided to take away my appendix.

What I still have left is my ovaries since those where healthy, so
I have no problem with the hormons or anything today.

What I do have a problem with is nerve pain.
Since the surgery I'm numb on the inside of my thighs (most of
the time) and except from that I have periods of nerve pain that
is changing character with time.
The first couple of months after the hysterectomy were horrible
because of this pain, and then it faded away.

Today it shows up about once every second month if I'm lucky
and I still haven't found any kind of relief.
It's a burning pain in the skin the first day that slowly goes
deeper and ends up all the way down to the bones. Usually it's
located around my waist, the back of my legs, sometimes in the
end of my back and it also includes a terrible pelvic pain both
inside and out. During this time my legs also tend to "fall asleep"
easily and get all numb.

Lately it's been wandering around and the pain changes from day
to day. Earlier it didn't last more than 3-4 days, but lately it's been
around for upto 2-3 weeks.
I'm in the middle of one of these periods right now and I've had
it for a couple of days as I'm writing this. Yesterday I noticed that
stress will make it worse...I got upset and it flared up like I poured
gas on a fire.

I've been told that this is a post-operative pain disorder and I
have a friend that have RSD since many years back. He have
suggested that I should see a neurologist since the pain goes
so deep and since I sometimes have colour changes in my skin
together with the numbness.

I'm writing though coz I would like to know if any of you have had
any experience using Alpha Lipoic Acid? I've been told that it's a
very effective antioxident, but here in the UK it's been difficult to
find other than in dietry suppliments.
If there's anyone out there who are located in the UK and could
give me some kind of advice where to find ALA I would be very
greetful. As it is now I don't have much to lose.
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  #2  
Unread 04-14-2004, 11:44 PM
Nerve pain after almost 10 years

Hi ((croxie)) & welcome
I'm sorry tho it is for your ongoing issues I suffered some Nerve Damage in my Vaginal Cuff area during my Hyst 4 yrs ago that still cause me quite abit of pain <sigh> I also was dx'd with RSD over a yr ago...it sounds very much like what you may be experiencing as well :-( There have been a few others here who have developed this painful condition in the area of their Hyst, you can use the search feature above to seek out posts concerning this to help learn more of what others went thru themselves with this condition.
I have no experience or knowledge on the Alpha Lipoic Acid...perhaps a search on that might help also You might also try checking our Resources directory as it contains hundreds of links to health topics pertaining to this surgery, conditions leading up to it & symptoms experienced afterwards:

https://www.hystersisters.com/vb2/vie...&pg=guidelines

Hopefully, someone will come along with some more personal info/insight to share!! Good Luck in finding some answers & relief I do hope you will continue to post & let us know how things are going for you......(((((((((((hugs))))))))))
  #3  
Unread 04-15-2004, 04:32 AM
Nerve pain after almost 10 years

Thank you for your reply

I will take a look at the resources above as you suggested. My biggest fear is that this have turned into RSD. My friend, who is a former Marine have had severe RSD for almost 15 years now and he is one of those cases they messed up even more because they knew so little about it when he got it.

Today it's a bit different, but there's still a lot of docs out there that has no clue what it is and who doesn't have the proper education to deal with it, which can make it all worse.

And I will stick around. Who knows, I might be able to contribute in some way

Thanks again

C.
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  #4  
Unread 04-15-2004, 07:41 AM
Nerve pain after almost 10 years

That's terrible to hear how your friends has worsened so! I started reading about RSD a few yrs ago as a Dr had mentioned the possibility...then a Dear friend developed a severe form of it. When it was first discovered during the Civil War, the treatment was amputation . That in itself tells just how bad it can be
I underwent to Sympathetic blocks as I was told it could help stop any progression & lessen the pain. They were soo painful and I later discovered it is contradicted as a treatment in RSD because it was found to worsen this condition <sigh> as can any invasive treatment done in that area. The risk for developing it in other parts of our body is increased also.
Do you take anything for the pain? I was started on Keppra for the Nerve pain, it has helped a great deal...the pain this causes can be unreal....

Here is a link to a wonderful site on RSD that really helped me in understanding it better:

www.rsd-crps.co.uk/

www.rsdhope.org

I also looked around & found the following concerning alpha-lipoic acid:
alpha-lipoic acid
alpha lipoic acid info sheet

Perhaps they contain some info in which you were searching for??
I'm glad you will be sticking around The support here is awesome

(((((hugs))))))
  #5  
Unread 04-15-2004, 04:55 PM
Nerve pain after almost 10 years

My friend is rare in many ways...he survived almost 4 years longer
than what the docs said he would...he's married and have 3
great kids. His wife have RSD as well and have had one child since
she was diagnosed.

And no...I'm not taking anything for the pain. I never really had to
since the cancer pain I had still have been too fresh in my memory
and raised the tolerance level a lot. Since I was stupid and
thought that this pain was normal it became a part of my days
when it happend and it's during this last year it become really
difficult to handle.

Tankies for the links...and yes, it's the right kind of Alpha Lipoic Acid I believe.

I already have the link for RSDHope in my fav since reading about
it helped me understand my friend and his problems. I've heard
that the support i better here in the UK though and that there are
a lot of good neurologists, even those who are specialized within
the RSD area.

And I will stick around...not that easy to get rid of me

Thanks again

C.
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