excruciating burning pain

[jessica1988]

My daughter has been type 1 diabetic for 12 years. 2 years ago she began feeling pain on her feet which gradually rose up her calves then thighs. She describes it as a severe burning pain, very sensative to touch and causes her many sleepless nights.  5 months ago she went for a nerve conduction test and result was she had damaged nerves caused possibly by poorly controled diabetes during her pubity years. Both of us tried so hard to \control it but her sugars were impossible the past year her sugars have been from, very good to excellent. They put her on to lyrica which did help but suddenly the pain rose to her stomache and shooting through to her back. It seems as if the pain has been rising up her body and my fear is what happens if it reaches her chest then throat? They put her through so many tests finding nothing. She is only 20 yrs old and anorexic looking so fragile and weak. Laterly she has been so depressed crying she cant live like this anymore. I myself am amazed at her courage and strength to survive each day and night in pain with barely any relief, shes studing at university, who are just great with her compensating with her due to her condition and i dont know how much longer she is able to continue. I am beside myself on what to do, I feel that i will soon have to give up my job to watch and look after her fulltime. Her doctors have no idea what to do either 1 even actually told her there was nothing they can do anymore that she will have to possibly accept and try to stand living this way in hope that it may go away just as it came????????
Any information or ideas what can be done would be greatly appreciated. I would travel the world in search of help for her.

[J T Junig, MD PhD]

I'm very sorry for you and your daughter.  Being powerless to help one's child must be one of the hardest things for a person to endure.

It sounds like 'diabetic neuropathy' is behind the horrible pain she has been experiencing;  I don't know if very tight control of her sugars would make a significant difference in progression at this point, or if once the damage has been done, the progression is inevitable-- that might be something to ask her endocrinologists.  Lyrica is similar to a generic medication, gabapentin-- again, something that might be helpful if cost becomes an issue or if the insurer gives you trouble with the Lyrica.  

There are more aggressive treatments for chronic pain, including spinal cord stimulation.  I would consider that an option of 'last resort' though given her likely vulnerability to infections.

Sometimes a small dose of an opiate is helpful for neuropathic pain;  because of tolerance, you don't want to get into a situation of repeatedly raising the dose... but simply staying on a low dose of a potent opiate will add a small degree of comfort that is different from the type of relief she gets from the lyrica.

Finally, travelling the world would not likely help, as we have some good options near by.  But I would seek out a University setting and obtain consultation there periodically, if you are not doing that already-- just to be sure that her care is keeping up with the changes in medical options.  

Take care, both of you,

JJ

[jessica1988]

Thankyou for your reply, at this moment she is under the care of her edocrinologist  in hospital and they are getting a neuroligist to have a look at her with faith there may be some help for her as they are talking options so far Ive only heard from what my daughter had to tell me as I am at work during the hours doctors come to see the patients. But ill write what you suggested down and tell her to give it the doctors. Thanks again for your help.