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Seeking advice for long-term neurological pain


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Old 08-11-2017, 11:42 AM   #1
Eubie823
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Seeking advice for long-term neurological pain

Hello,

I am writing in the matter of my girlfriend. She started having pain in the pelvic area approx. two years ago. At first, it was only during sex, a couple of months later she had the pain even without sex. As time went on, the pain was getting stronger, her gynecologist said it was endometriosis.

A laparoscopic surgery removed three endometria, however, the pain remained exactly the same and my girlfriend could tell that the post-surgery pains we located elsewhere than the original pain. Thus, the pain originally had nothing to do with endometriosis.

Since then, she has been to an MRI, neurologists, internists, orthopedists ... nobody could find anything wrong with her, yet her pain was growing stronger by the month. As a last resort, she was prescribed some psychological and psychiatric help to help cope with the ever present pain.

A half a year ago she started suffering from a pelvic floor muscle paralysis. She exercises each day, however there seems to be very little progress.

Now, she is in pain basically all the time. The painkillers do not work at all and there are two layers to the pain – there is a constant pain and then surges of very strong pain that come and go. The pain gets worse when she walks or sits, however do not go away when she lays down. During night, she gets woken up by the pain multiple times.


In the past, we have considered maybe herpes virus could be causing her this pain. However, if the pain was herpes-induced, she would more likely be in pains during flare-ups and without pain when the virus is dormant. Also, my girlfried has very low muscle tone. Even when she exercises, it remains low, she has been like this her entire life.
I would like to ask for any kind of advice. It seems more logical to me that the condition is nerve-based as there are some common symptoms with her condition and “pudendal neuralgia” (e.g. feeling of numbness in the vaginal area, stabbing pain, … ) which is a condition stemming from a nerve pressure.

We have been to a neurologist before and he found nothing. An MRI of the pelvis with a special focus on the nerves found nothing. But we know for sure that the problem is not gynecological and its not psychiatric (she would not get worse due to walking etc).

I am hoping that somebody reading this post recognizes her condition and will give us useful advice.

Many thanks in advance,
Daniel

 
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Old 08-11-2017, 06:39 PM   #2
JuJu Burd
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Re: Seeking advice for long-term neurological pain

I don't have answers for you Daniel. But I will say just hang in there! Hug your girlfriend! You both know her pain is real & that's important. Just because docs aren't seeing the cause in imaging or testing doesn't make it less so. Has she tried acupuncture? After months of clear tests & imaging I had to diagnose myself! My neurologist was/is useless. I have a Traumatic Brain Injury & Reflex Sympathetic Dystrophy in my left hand & wrist. I turned to alternative therapies when the medical system abadoned me. Acupuncture helped my speech immensley. Look into it, I know my gal has had success with endometriosis patients.
Take care
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Old 08-12-2017, 02:30 AM   #3
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Re: Seeking advice for long-term neurological pain

Hey Jules,

thanks for the good words, we have been to acupunture so far to no avail.

For TBI, have you checked the what WarriorSoul has to say? Just google "warriorsoulagoge traumatic brain injury" - I recall seeing some doctor Gordon leading some intutite for TBI with supposedly pretty good results.

Daniel

 
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Old 08-12-2017, 02:51 AM   #4
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Re: Seeking advice for long-term neurological pain

This doesn't sound neurological to me. I an not a medical professional, but living with Neurological pain, as I do, I have multiple sclerosis, this ins't the same description of pain which I know well.
Has your GF considered going to see a GI doctor? A doctor who specializes in diseases of the digestive tracK? This could be related to something she is eating or a problem in the intestines...
I would see a good GI doctor...if no neurologist has found anything on all the tests you mention, there is very little chance that they missed something, BUT they may not be looking in the right place..

Just a suggestion. Chron's disease and other GI diseases can present very similarly to what you are describing . They care caused by diet.
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Old 08-12-2017, 01:16 PM   #5
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Re: Seeking advice for long-term neurological pain

Daniel-

Thanks for the tip. What about pain relief stuff from a "natural" store? I go to 1 here in Columbus, OH & it has many things for pain relief even specialized for endometriosis. I know the optimum would be to get a medical diagnosis but that may not happen for a while. My motto became "I'm the expert on me". Docs can tell you/your girlfriend is fine & there is no medical reason for her pain but the fact remains: she has pain! Releive the pain & then continue the search for the cause. It must be terrible for her. You are a good soul! What about Reiki? It's a body energy thing, not sure of the specifics just know I had a lot of it done in 2010 for my left wrist pain. I'm not in daily chronic pain as most people with Reflex Sympathetic Dystrophy (RSD) are. Maybe that can help with her pain. Also, she should see a functional doctor. Functional medicine looks at the whole body as a system, kinda like "I have a sore on my foot. Why does my heart hurt?". There are so many things that could be contributing to her pain. Functional docs typically aren't covered by insurance as our medical system views them as "witch craft". In our system specialists only know about & look into that specific area. An OB/GYN only wants to know about your plumbing not the headaches you are experiencing. A neurologist only knows about nerves & brain, not other stuff. You & your GF are probably smarter than most docs are at this point. I know I am cuz I'm always researching & reading about what ails me. Hang in there!
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Old 08-13-2017, 05:45 AM   #6
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Re: Seeking advice for long-term neurological pain

Hey MSNik,

thanks for a reply. The docs investigated her digestive tract, including colonoscopy, and found nothing.

The reason I think its neurological is that e.g. yesterday I was giving her a massage and running my hands around her ankle area she told me that her pains were getting stronger and I touched upon a tight spot around the ankle.

Thanks for the message anyway!
Daniel

 
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Old 08-13-2017, 05:50 AM   #7
Eubie823
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Re: Seeking advice for long-term neurological pain

Jules,

we are from Europe and here you dont find the kind of a doctor you talk about.

The same goes for "natural stores" - there is no such thing around here. If you find some "natural store" pain remedy online (e.g. for endometriosis) I will be glad to check out the ingrediets even though I am quite skeptical since the strongest opiate and non-opiate pain killers have not worked much on her.

Daniel

 
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Old 08-14-2017, 04:31 PM   #8
JuJu Burd
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Smile Re: Seeking advice for long-term neurological pain

Daniel,

Ugh!!! Your poor girlfriend! Her story makes me so mad! I don't tend to trust the internet as people will do anything to make a buck!

All I have are good thoughts for you both. I hope things look up for both of you.

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Old 08-15-2017, 03:27 PM   #9
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Re: Seeking advice for long-term neurological pain

I'm wondering about the possibility of a lower lumbar spine issue.

 
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