Chronic Pain in all 4 quadrants, upper and lower spine

[billieboyer990]

I honestly don't know how to place this question.  I have had problems for over 35 years and have been to so many doctors.  I know I have DDD, bone spurs, myofacial pain syndrome, CFS, nerve impingement, cervical fusion C5 thru C7 and L4-5.  I have more spurs in my cervical area and lumbar area and mild scolosis now.  Because of the extent of my pain I now have the fentanyl pump.  Whenever I reach or stretch upward I end up with spasms from top to bottom including my feet.  The bottom and across the top of my feet, both of them.  I have tried for the past 5 years to get a doctor to tell me they would try to do something for me.  In Texas i was given botox injections for the myofacial pain and this helped for about 7 months but in Missouri the doctors claim they do not get reimbursed enough so will only give steroids and steroids really ravage a person's body and for the past 3 years have been refusing them.  My pain doctor will do treatments on my spine but the steroids he uses only cause more weight gain and I have to refuse them as my back cannot support any more weight.  Am so trying to stay out of a wheelchair or being bed ridden.  I am getting so I can do less and less.  Have started a website for people in chronic pain just to give me something meaningful to do and help others.  Is there anything else that can or is being used in treatments for the spine besides steroids.  I will see my pain doctor the 17th and will talk with him if you have anything at all to offer.  I do my research but thus far nothing pops up that he can do.  I would love to find a spinal specialist.  I found one in Columbia but he does not take my insurance.  Thanks for allowing me to air this.  My pain even with breakthrough meds usually runs most days between 8-9 on the pain scale.  Sincerely, Billie

[billieboyer990]

A related discussion, Back burning from top to bottom was started.

[Billie358]

I realize that exercise is often the key to weight control and we need to keep our muscles in shape.  As I mentioned my problem started at 29 and it has been a battle since then.  I have been unable to work since 93 and that is validated.  I refuse steroid injections in any part o my body as it adds weight that is all but impossible to loose and I refuse to purge myself to loose it.  Am as active as i can and to the point of causeing muscle spasms, and this has been going on for years.  I hate medications and never take more than I have to.  I had my doctor reduce my pump as I felt my body was getting too dependant on it.  Lately we did have to go up twice as it was a hard spring where we live and in order to move I needed more help.  However I will have him reduce it again come summer.  Some of us are very cautious regarding our meds and truly do try to exercise caution with our meds.  My problem is that the doctors see all I have tried to do to help myself which includes mobility and stop right there.  I was actually told I would end up bedridden one day.  Finding a good spinal specialist in my area is nearly nil.  I have tried for several years now.  My area code is on my application if you know of any who might take a 68 year old woman who does not want to be bedridden.  I got to bed and 4-5 hours later I am up with either upper body numbness (rediculopathy) or muscle spasms in my lower body along with the pins and needles.  I do not have diabetes.  I have a very bad spine from the Cervical to S-1 with no exclusions.  I have about 4 or 5 good working vertabrae in my whole spine now.  About 6 years ago I acquired scolosis along with Cervical, Thorasic and Lumbar pain.  I have DDD as well as bone spurs and narrowing of the Cervical canal.  I want to be seen by a good clinic and a good spinal doctor before i am too old for any further treatjment.  I do not think that is asking too much.  Difficult cases are risky and make most doctors nervous, this is why I am looking for a good, experienced doctor.  Then iff nothing can be done, I can accept it.  Billie  

[J T Junig, MD PhD]

I'm afraid I don't have any great suggestions;  one of the most important factors in determining your disability level will be your weight, so you are appropriate in your concerns in that area.  You may even want to consider a weight loss program using medication to help.

Exercise is a huge help with myofascial pain;  the patient never wants to exercise, but it is always helpful if the person can/will do it.  It sounds like the weight issue and prior surgeries are interfering with exercise, which becomes a 'vicious circle' for chronic pain.

My only other suggestion is to do your best to keep your dose constant with the fentanyl pump.  Tolerance sets in with any opiate, and so if you can keep the dose constant you will lengthen the time that it will remain useful.  I hope that you find some better answers eventually, but I suspect that there will not be a quick solution to the problems you are having;  I think that focusing on weight loss has the best chance for creating meaningful improvement.