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Help anyone with nerve damage? Help anyone with nerve damage?

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  #1  
Unread 07-12-2003, 05:49 PM
Help anyone with nerve damage?

Hi

I have been diagnosed with chronic nerve damage caused from the traumar of the opperations Ive had. It is diasabling me to do normal day activities. I thought the hysterectomy would let me get on with my life after several surgeries to treat chronic endometriosis. Boy was I wrong. The nerve damage is also effecting my bowel function slowing it down so I am constipated.

Has anyone else been diagnose with this. Has anyone found any alternatives or medications to help? I am so depressed the thought of feeling like this for the next 50 years is unacceptable. Please please someone offer me a starting point on how to control this chronic pain.
Hes trying me on a trycilic medicaion but Im so sensative to drugs last time I took this I was sedated most of the time.

Also doing an exclusion diet and wheat increases my pain. Could I have celiacs disease. Anyone else have this & what were your symptoms?

Hope someone can give me some info or advice. Im desperate. Thanks to anyone who takes the time to reply

Love Tina xxxxxxxxxxx
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  #2  
Unread 07-13-2003, 09:32 AM
Help anyone with nerve damage?

((((Tina)))))) I'm so sorry you've been having all of these problems and that your hyst didn't bring the expected relief

I do not have any experience with Nerve Damage, but, unfortunately, I know that several Road Dwellers are dealing with these issues Hopefully, they'll be along soon to provide some insight. In the meantime, here are links to valuable resources where Nerve Damage and Pain Management are concerned:

https://www.hystersisters.com/vb2/sho...hreadid=104206

https://www.hystersisters.com/vb2/sho...hreadid=102446

https://www.hystersisters.com/vb2/sho...threadid=93993

https://www.hystersisters.com/vb2/sho...threadid=93990

https://www.hystersisters.com/vb2/sho...threadid=91915

https://www.hystersisters.com/vb2/sho...threadid=80224

https://www.hystersisters.com/vb2/sho...threadid=80299

https://www.hystersisters.com/vb2/sho...threadid=81251

https://www.hystersisters.com/vb2/sho...threadid=76824

https://www.hystersisters.com/vb2/sho...threadid=76164

https://www.hystersisters.com/vb2/sho...threadid=76159

Also, here are resources for Celiac Disease:

https://www.hystersisters.com/vb2/sho...threadid=76402

Also, here's a recent thread where Celiac Disease is discussed, explained and links are provided:

https://www.hystersisters.com/vb2/sho...ghlight=celiac

Wishing you the best of luck and hoping that you find relief soon. Also, please, don't hesitate to come and vent here anytime you need to
  #3  
Unread 07-13-2003, 11:30 AM
Help anyone with nerve damage?

Tina,
I've been diagnosed with nerve damage. Unfortunately I haven't found anything that has totally taken away the pain, but I have found a bit of relief with pain meds. There are some medications for nerve damage, such as neurontin, that have been of great help to many. Have you been referred to a Pain Mgmt Clinic??? They can be of great help in helping you to find something that will help to ease the pain.

I too have many stomach problems. I haven't been diagnosed with Celiacs, but have been diagnosed with many food allergies. I too cannot eat wheat or alot of fiber has I become very constipated and the pain intensifies tenfold. Have you been to a gastroenterologist? It may be helpful to have some tests to rule out things that may be causing your stomach problems.

One of the things that has helped me some is first to stay away from all those foods that are on my food allergy list, second is to read package labels very carefully. For instance, I have an allergy to yeast and you would be surprised at how many prepackaged foods contain yeast. Actually I eat very little prepackaged foods and eat lots of fresh vegetables and turkey.

Besides looking into Celiacs, another condition you might want to check into is Candida. Candida is excessive yeast in your system and it can wreck havoc on your digestive tract also. That is what I was diagnosed with last year. I was put on a special diet, one that elimated all sugars and flour and fruit also. Fruit turns into sugar which yeast feeds on.

I hope you can find some answers Tina. I know firsthand how painful digestion and tummy problems can be.
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  #4  
Unread 07-14-2003, 06:30 PM
Help anyone with nerve damage?

My doctor mentioned nerve damage to me as well. I am 7 months post-op, and having a great deal of pain and swelling. Right above and below my incision is numb. Above that area is where I experience pain when touched. I had 2 c-sections before my TAH/BSO, and the doctor said I had alot of adhesions she had to "clean up".

How did you get your diagnosis? Did your doctor mention injections of steriods and anesthetics?

Any information you guys can give would help me. I am miserable and lost with this unexpected complication.
  #5  
Unread 07-15-2003, 05:34 AM
Thank you for support

dear Girls
Thankyou for the links and support offered. I went to see my lupus specialist yesterday who is reffering me for some counselling and hydrotherapy in hope to get some of this agonising pain under control. I have started Imipramine trycillic and as other meds 10 mg knocked me out for 24 hours. cut dose in half last 2 days but feel awful on it. I can't take my pain meds as I couldnt drive or function. I just feel void of emotion like a cloud on my head drifting away with the fairies. It has made me sleep and thats about it.

Just got back from the endrocronologist. I havent had any hrt for over 14 months now and was hoping he would agree for me to take a low dose but wont prescribe it. I so sick of the symptoms flushes, disturbed sleep and muscle & joint pains. Having no estrogen isnt sitting well with my lupus it wont settle. Before the hysto/bso I had flare ups but this is continous has been now for months. I was hoping he would give me some tetesterone but no estrogen no testesterone. I just want to feel like a normal person and woman. My sex drive is nil and before all this I was fine. I have a wonderful hubby who is understanding but I want our relationship to be back to normal is that too much to ask. I ended up bursting into tears in his office. Its so easy for these people to say stick with this & that but the reality is a daily battle has been for last 4 years and Im so tried and worn out with it all I just want a break.

Thanks for listening Tina xxxxxxxx
  #6  
Unread 07-15-2003, 10:26 AM
Help anyone with nerve damage?

Kristine,
I did have steroid injections into my ilingual nerves several times. I did receive a little relief at the time. After going to several GI docs and having alot of the GI tests to make sure that something else wasn't going on, doc thought that it was probably nerve damage.

He did go in and remove the damaged parts of the nerves but I continue to have problems. His theory is that you can never remove all of a nerve and that the nerve can continue to shoot off sparks and signals. I imagine those little buggers looking like a downed power line, just flapping away in there.

There are meds that can help with nerve damage and problems. Unfortunately for me I haven't been very successful with any of them. Either I had too many side effects, mostly due to a very sensitive stomach, or they just didn't do much for me. But that is just me, I have a very sensitive system and usually what works for someone else will not work for me. I also still don't believe that nerve damage is the cause of ALL my problems, I think it's just a small piece of the puzzle.

I did ask my Neurologist about possible testing to determine if nerve damage truly was the cause. At first he mentioned that he had an associate he could talk with about the problem. But on my next visit he did a 360 and acted like he didn't know what I was talking about.

I think it may also depend on which nerves they think are damaged. In my case I was told that the ilingual nerves are very very small so it may be hard to do any testing. I do remember reading something in the resources forum about some testing that can be done on the Perindual nerves.

Perhaps Pain Mgmt would be your next step. They may be able to help and figure out if nerve damage is your problem. There's some good information in the Resources Forum here. https://www.hystersisters.com/vb2/for...s=&forumid=159 Perhaps you could read thru some of the links, print out the info and bring the printouts with you to your doctor so you can discuss what your options are.

Tina,
I hope you are able to find something to help. I can't imagine having to go thru this and than suffer the symptoms of menopause also. That is one area where I'm doing well. My hrt therapy works very well for me.
  #7  
Unread 08-04-2003, 09:05 AM
nerve

Tina,
I am 5 months postop and have been diagnosed with a damaged ilioinguinal nerve. I could not tolerate neurotin, and I am presently taking over the counter meds. that relieve very little pain. The only relief that I have been able to receive came from a pain management doctor. He used an old drug that has no systemic side effects. It is injected near the hip and can relieve pain for 3 weeks. The drug is called Sarapin and it comes from a plant. You will experience some abdominal contractions the first three days and then the pain will be cut in half. Since it has not systemic problems, it is safer than a steriod. You can receive up to 15 shots a year. My doctor said that most doctors do not use or do not know how to use the drug. It has been used for years, but was replace with steriods. Ask your doctor about using the medication. You can read about Sarapin on the internet....give it a try!
  #8  
Unread 08-09-2003, 04:14 PM
hi, just saw your post

hi there, i just read your post hon. i too have been diagnosed with nerve damage. i have pudendal nerve damage.it is agonizing to say the least. i cant tkae any thing though for it as far as meds. since my hyster i have become chemical sensitive to all meds even hrts.i can relate to what is going on with you to a "T".I hope you find some type of relief. i was told my dr wants to put a pace maker in my back for this or do nerve blocks. i am skeptical about both....chris
  #9  
Unread 08-09-2003, 04:54 PM
Help anyone with nerve damage?

Tina:

why is your endocrinologist saying absolutely NO HRT? And, since the lupus is flaring up so much, what does your rheumatologist say?

I've seen others who could take no estrogen at least be able to take a bit of compounded testosterone and/or progesterone. Perhaps the endo isn't familiar with compounding? Just a thought...

I found that the nerve damage in my shoulder and nerve pain have been helped somewhat by taking Welbutrin (which was an unexpected side effect). It doesn't seem to be too sedating, and I'm taking a very low dose. Any chance of trying that avenue for relief? The ones with the best sexual side effect profile seem to be Celexa, Lexapro, and Welbutrin...just an ...



Audrey
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