Dysautonomia/ Pain & Addiction

[Rebeccawithdogs]

I've had dysautonomia and have read posts by various members, learning much from them and relating to them. Often, I see mention of pain. This is my first post. What type of pain do you feel is associated with dysautonomia or its accompaning diseases? How do you treat your pain? When I first was diagnosed with dysautonomia, I treated the associated pain with Vicodin, only to become addicted. I know that Opiates are vasodialators and are contra-indicated, but I feel that the pain is greater than the consequences and even with a year off of Narcotics, I still have dysautonomia.

My pain is bone spurs, scoliosis, arthritis, bulging discs, stenosis, muscle cramps and neuropathic pain. I feel that orthostatic hypotension contributes to this, as does the fatigue and disrupted sleep associated with fibromyalgia and dysautonomia.

Further it has been suggested by another recovering addict, that I try to find someone who has dysautonomia, who could relate to pain and addiction who is not using narcotics. Any feedback would be greatly appreciated.

[Katybug]

There is a therapy called myofascial trigger point release. It can be done manually or through another therapy called dry needling. Have you tried this to alleviate pain? It is very effective although finding a competent practitioner can be a challenge. It is usually practiced by either physical therapists or massage therapists. Some osteopaths may also practice this as well.

[bellgirl]

Neuropathic pain can be treated with Gabapentin, Lyrica or Cymbalta, which is specifically for nerve pain, for Fibromyalgia, and they aren't narcotics, although I do take a controlled substance for sleep, because of sleep apnea, and my brain not allowing me to sleep, in very small doses. No one can function without sleep. There are also muscle relaxants as well, if you have trouble with rigidity and muscle spasms.

Alternative therapy, like Katybug mentioned, is also another option, but sometimes one needs pain medication before or after these procedures, as well, depending how bad your Fibromyalgia pain is...A massage would always be good therapy, by someone who knows the body well, and physical therapists now need their doctorate when they go to school for it. My son just graduated from UAB. So I think their knowledge of the body, muscles, ligaments, tendons and nerves as related to the spine, and brain, etc. is much more thorough and some insurance companies will pay for some physical therapy, too.

[looneymom]

I'm so sorry that you are dealing with the pain issues. My son is 13 and has been dealing with this issue for over two years. This last January, he got sick with the flu and was not able to sleep through the night. He also deals with a daily persistent headache and complains of pain throughout his body. He is very hypersensitivity to touch and deals with a tender and painful scalp. He has tried all three of the medications that Kimbellgirl mentioned in her post. About two weeks ago my son saw his neurologist and she gave him a prescription of extended release Clonidine to try. My son has actually started sleeping better and was able to sleep through the night last night. Clonidine has been known to help with different forms of pain and can help with sleep issues. The doctors and I are hoping that once my son starts getting several good nights of sleep that maybe some of his pain will start subsiding.

[Katybug]

Rebecca,

I also want want o mention that you may find a lot of good pain management information as well as comraderie on a forum called Inspire at the www.ednf.com site. This is a site for people with Ehlers Danlos Syndrome (which by the way some of your symptoms fit and you may want to research further). However, lots of EDS patients also suffer from dysautonomia of one form or another and have severe pain issues. They tend to have long lists of ways to help pain that do not involve medication. But, I know there are also members there that have faced addiction with their prescribed pain meds and they may be able to lend some specific support.

[E Soskis]

When nerve pathways are altered, so are pain pathways - we all interpret pain differently - it depends upon which set of nerves are messing up at the time. My pain pathways are so screwed-up that I often don't recognize pain. I may be restless, agitated, and grumpy only later to find out I was in pain. Any type of narcotic has an adverse effect on patients with autonomic failure - particularly the GI system. I loathe taking narcotic pain medication and usually only do so when the nurses at hospital insist (because I don't recognize pain well). I have found that the autonomic failure, particularly from autoimmune origins, causes a generalized inflammation throughout the body - I have found for me that ibuprofen is a real help - it is an anti-inflammatory and almost always improves my disposition greatly -