I came across this site in search of something...anything. In march of 2014, I fell and fractured my right shoulder. No surgery but physical therapy(neck and shoulder) for 6 weeks. As a result, I have had a myriad of symptoms that have lead me to 5 neurologists, 3 ortho specialists, pain management, and had pt twice, my last was mainly hydrotherapy. I now see an osteopathic doctor that has said I have nerve damage along with the last pt I had. I am looking into hypnotherapy or cranial-sacral therapy since all other conventional methods have not worked. Massage and acupuncture are not options becasue of the muscle spasms. Been on 14 different meds (anti-convulsants, antidepressants, pain meds, etc...)
My problem is that I have neuropathy/parasthesia all over my body, hypersensitive skin to touch and temperature, nerve pain in my right shoulder and arm, and muscle spasms that are induced by reflex stimulation. Everyday I wake up with parts of my body tingling or numb, I cannot wear jeans or heavy fabrics, I sleep in a bed of sheets that make me feel like I am sleeping on sandpaper because the neuropathy is worse when I lay down, and often I cannot touch anything because the palms of my hands are so sensitive....
I need to find a neuro who specializes in neuropathy or nerve damage other then diabetic neuropathy who will treat me for that and not for other things that are not my chief complaint such as the muscle spasms. Someone who wont prescribe me meds that I have already tried unsuccessfully. I am left with symptoms that are unmanaged daily and would like some resolve. Even if I could find someone who is conducting a research study maybe they could offer something better then what I have now which is nothing that works and specialists who do not listen.
To top is off I am a RN, know the language, and am a fulltime student getting my masters degree... no these symptoms are not because I am crazy...
Thanks for any information...

Hi there,

I understand pretty much all of your conditions, amongst many other conditions I suffer Neuropathic Facial Pain/TN and bodywide Neurological Hypersensitivity. Even being in the North of England I cannot bear anything covering me at night, even the lightest clothes burn. Intensity overall from all my conditions (excluding Cluster Headaches) is a 9.

The only treatments which make life bearable are 4 weekly infusions of Lidocaine, Oral Ketamine and the side effects of the heavy doses of Topiramate I take for Cluster Headache suppression - not that it is working at present. All together brings my Hypersensitivity down to a 5 for 2-3 weeks depending on external circumstances.

Meditation has also been a powerful weapon in my arsenal until recently where I have been unable to achieve a Meditative State due to further pain caused by a fall. I miss it and am worse off for losing the Practice.

I hope I have given you a couple of ideas you have not tried yet. Wishing you relief from this terrible list of conditions.

Dave.

Hello and Welcome,

I am so sorry you had to come join us but it is a soft place to land. We have a really supportive community.

I don't have neuropathy but I suffered a complicated nerve injury during a minor surgical procedure and subsequently had a 3.5 hour repair. I later ended up with CRPS after another procedure (long story). Guess my poor nerves had had enough. Many of us here understand nerve pain and how devastating it can be.

Hypnosis can be helpful. I saw a therapist versed in chronic pain and trauma who utilized EMDR and hypnosis and I found them both beneficial. Addressing the depression and anxiety that can come with these kinds of life changes is important and therapy can increase coping skills for pain.

I am getting ketamine infusions and they help with both CRPS symptoms and the original nerve pain I had before CRPS.

Welcome aboard. You will find the peripheral neuropathy forum full of helpful people. You could Come see us on the CRPS forum as well. It sounds like you share a lot of features with us and we have an active, caring group of members all dealing with neuropathic pain.

I hope you find what you need and get relief soon!
Sending hugs and healing love,

Hello and welcome, happy to see you have come to be with us, it a great place to be. We have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hello gypcgirl,
Welcome to the NeuroTalk Support Groups.

I just wanted to leave a couple of forum links below that you may want to explore.

Peripheral Neuropathy Forum

Sub-Forums: PN Tips, Resources, Supplements & Other Treatments