Chronic Pain members - Welcome, please introduce yourself

Hi Fran - when you mention carcinoma - is that the same as carcinoid cancer?

Hi Joanne, I'll jump in to clarify here. Carcinoma and carcinoid are not the same thing.
Carcinoma is a cancer that begins in the skin or in tissues that line or cover body organs. Carcinoid tumor is a specific type of neuroendocrine tumor.

Have suffered with burning tongue for 25 years everyday. Would like to connect with others with long time misery as me.

I have Ehlers-Danlos Syndrome 3.I
I am in pain 24/7 of varying degrees. I have been prescribed Tapentadol (Palexia) which is this side of useless.
I attended the Pain Clinic in Norwich and because I missed the last class of Attitude Commitment Therapy (I called in to say I was in terrible pain and couldn't make the journey) I was informed they could do nothing more for me which prevented me from getting hydrotherapy, physiotherapy, acupuncture and counseling.
So that's my present situation.

@tabitha I am sorry for your problem. I have said this before and I will say it again. As a group of chronic pain suffers we need to become more assertive and push for our rights to treatment. When your group refused to accept your reason for missing the group and dismissed you with out regard to your rights. I believe you should consider seeking out an attorney and sue them or at least threaten to sue.
Your reason for missing the group was valid in my opinion. I have missed doctors appointments and other events due to excessive pain on the day of the event. To me that is a valid reason, especially if you are driving yourself and would have endangered yourself and others if you drove in so much pain that you might have loss control of the car.
If you can not afford an attorney check with legal aid or any attorney groups that provides service to the poor or special groups for civil rights.
The medical-industrial complex is making a huge amount of money from chronic pain suffers and only if we threaten their funding source will they start to pay attention to our needs.
Good luck and I hope you will become pain free in the near future. 19lin

Hello connielaine and welcome to Connect. Thank you for sharing your frustrations. 25 years is a very long time. I recommend checking out the existing conversation on burning mouth syndrome as other members are discussing symptoms similar to yours.

You can join that discussion here http://mayocl.in/2d5g7f5.

@kelseydm
Hi, im new here so im not sure exactly what to do. I seen a post to introduce myself. My name is Joyce P. I just turned 51, around 2 weeks ago. I have 3 adult children and working on grandbaby #6. I have 2 dogs, 2 kittens, i live alone, i have numerous health issues and i live with chronic pain.

Thanks for your response, Scott. So sorry for all your wife's pains and struggles. What is MS Contin? I am on oxycontin ,lyrica, cymbalta, anaprox, and tylenol. I've tried acupuncture. I also had to have my metal removed from my back last year because it appeared to be causing lower back pain.

Hi Cheryl-
Thanks for your response. It can't hurt to hear what others with similar conditions are doing for their pain. I'm hoping that someday the medical community will come up with something to relieve the pain of CRPS.
Kathy

Hi @kathyv It is one of the forms of oral morphine. You can read about it here http://www.mayoclinic.org/drugs-supplements/morphine-oral-route/description/drg-20074216. My wife used to carry one of her screws around with her just to remember 🙂

Peace and strength