Simply going crazy - New to site

[Tia123]

Hi,

I am currently on almost a year with struggling with this nerve/pelvic pain. I am reaching the point of considering sucide as an option. I have been struggling with a complexion of health issues for the last 8 yrs ( connective tissue disorder, blood infections, c-diff, sarcoidosis and all arthritis) and I never thought it could get worse, but it has.

I've been down the road of trying a bunch of medications and nothing is helping. I can't take NSAIDS due to it causing bleeding. Painkillers work but they aren't an answer as my body will just become used to them and I'll end up needing more and that causes a whole new set of problems.

So, I am at my breaking point. The pain in my spine and the nerve zaps and constant sensation in my feet, legs, groin and spine are driving me insane. I don't recognize the person in the mirror anymore. I can't stand feeling this anymore.

I've done everything I can think of to ask for help. The ER doesn't want me because I'm not an "emergency", and I don't know what else I can say or do to make the doctor(s) understand how desperate and miserable I am. The more upset I get the more they think it's a mental problem. I can deal with the chronic pain but I can't deal with the nerves so sensitive I can't function. Trying to sleep at night is by far the worst for me.

My role as a wife, mother, daughter, sister and aunt is gone. I no longer go outside except for doctor appointments.

I need help. I don't know what to do.

[Patty]

Have you been to a pain clinic? Have you had an MRI? Any PT orthopedic and pelvic floor? We have all been where your at believe me. Soaking in a tub ice to areas and swimming helps me. But again I do understand the suicide thoughts. You need to also consider seeing a therapist.

[Tia123]

Have you been to a pain clinic? Have you had an MRI? Any PT orthopedic and pelvic floor? We have all been where your at believe me. Soaking in a tub ice to areas and swimming helps me. But again I do understand the suicide thoughts. You need to also consider seeing a therapist.

Hi Patty,

I have been to a pain specialist but unfortunately the only thing they offered was a long term pain killer which I reluctantly went on. That turned out to be a big mistake as my body became tolerant very quickly and unless I wanted to keep increasing the dose, which I did for awhile, it's not a long term option. I took 2 yrs to wean off a very large oxycodone dose because the side effects were horrible ( not to mention the stigma of taking pain meds ).

I've had an MRI, I'm on a waiting list for pelvic organ prolapse repair surgery. The biggest problems my MRI showed was narrowing and compression of the area in my thoracic and lumber area ( spinal canal ). I also have numerous Tarlov cyst along my spine. My GP didn't seem to think my MRI was a concern.

I tried to see a therapist and it backfired. I mentioned it's becoming too much to handle and that led to a phone call to my GP which resulted in my meds being lowered. So now, not only am I struggling with this nerve problem but my body is coming off of certain meds abruptly.

At this point I'm completely frustrated and losing hope that this problem with have any resolution. I don't know what else to say or do to make the doctors understand how unbearable this is.

Thanks for your reply.

[Violet M]

Tia, please hang on. You do have options and there are doctors out there who will help you. There was a time I did not want to live but I have a great life now and I'm so glad I kept searching until I found the right doctors and treatments. Not sure where you live but maybe someone here will know of a good doctor in your area.

You might want to do a search on Cora's most recent posts. She hasn't been on the forum for awhile but she posted about her experience with taking suboxone (buprenorphine and naloxone) which provides excellent pain relief for her. The naloxone helps to keep you from becoming tolerant to the drug. She has been taking it for several years and is still doing very well with it.

You may also want to do a search on Hermajesty's posts on tarlov cysts and on Lottanerve's posts on her success with a pain pump.

Before you have surgery for pelvic organ prolapse please consider the pros and cons. I have severe pelvic floor organ prolapses but I am choosing not to have surgery for them because I know other people who developed severe pain afterward and I'm not willing to risk going back to severe pain. Instead, I wear thigh shapers which helps make life tolerable. Sorry if that's TMI but really, it's a genetic thing so I have nothing to be embarrassed about and maybe telling you this might be helpful.

I have had c-diff also so I know how sick it can make you. Are you taking a probiotic regularly? I take the Trader Joe's brand which is cheap but I'm doing really well on it. If you've tried everything and nothing is working you may want to ask your doctors about fecal transplant.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365524/

I can't say if your MRI is of concern or not but an MRI is not always an accurate indicator of how much pain a person will have. I have spoken with an orthopedic surgeon who said he sees MRI's that look really bad and the person has no pain and he sees other MRI's that don't look bad at all but the person has major pain.

Unfortunately, sometimes it takes searching and maybe even going out of state to find the right doctors and treatments. That's what many of us have had to do.

Hopefully some of our other members will have some good ideas for you.

Violet

[Ray P.]

Hang in there

[Tia123]

Tia, please hang on. You do have options and there are doctors out there who will help you. There was a time I did not want to live but I have a great life now and I'm so glad I kept searching until I found the right doctors and treatments. Not sure where you live but maybe someone here will know of a good doctor in your area.

You might want to do a search on Cora's most recent posts. She hasn't been on the forum for awhile but she posted about her experience with taking suboxone (buprenorphine and naloxone) which provides excellent pain relief for her. The naloxone helps to keep you from becoming tolerant to the drug. She has been taking it for several years and is still doing very well with it.

You may also want to do a search on Hermajesty's posts on tarlov cysts and on Lottanerve's posts on her success with a pain pump.

Before you have surgery for pelvic organ prolapse please consider the pros and cons. I have severe pelvic floor organ prolapses but I am choosing not to have surgery for them because I know other people who developed severe pain afterward and I'm not willing to risk going back to severe pain. Instead, I wear thigh shapers which helps make life tolerable. Sorry if that's TMI but really, it's a genetic thing so I have nothing to be embarrassed about and maybe telling you this might be helpful.

I have had c-diff also so I know how sick it can make you. Are you taking a probiotic regularly? I take the Trader Joe's brand which is cheap but I'm doing really well on it. If you've tried everything and nothing is working you may want to ask your doctors about fecal transplant.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365524/

I can't say if your MRI is of concern or not but an MRI is not always an accurate indicator of how much pain a person will have. I have spoken with an orthopedic surgeon who said he sees MRI's that look really bad and the person has no pain and he sees other MRI's that don't look bad at all but the person has major pain.

Unfortunately, sometimes it takes searching and maybe even going out of state to find the right doctors and treatments. That's what many of us have had to do.

Hopefully some of our other members will have some good ideas for you.

Violet

Thank you Violet, I will check out those other posts.

[April]

Tia123,

That all sounds extremely difficult. As Ray P. said, hang in there. I don’t have much to add to the list of suggestions the others gave. I agree with Patty that ice is great option. I don’t think I could survive this problem without it. Obviously, that won’t solve all the problems you are dealing with, but it should help if you have burning pain.

April