intractable pain disease

[grandma107]

How does intractable pain disease happen? It still isn't clear to me what it is.

Does IPD stem from another disease such as Complex Reflex Sympathetic Dystrophy Disease (RSD)?

What part(s) of the body does it affect & in what ways?

[Dr Santos]

Hi Sue,
I'm sorry to hear what you have been through for the last few years. Due to the rarity of Joshua's condition and lack of information about it, you were able to experience and suffer such consequences. As far as I know, there is no training or residency program offered for this condition. The exact data or number of people who have this condition is not much, but I came across an article/handbook done by a specialist, Dr Forest Tennant, in one of my searches with very helpful information. Do let me know what you think about his link:  http://pain-topics.org/pdf/IntractablePainSurvival.pdf
I know how hard to be in the dark about Joshua's condition, but hang on and always stay positive. Take care always and hope to hear from you soon.

[grandma107]

Thank you so much for responding to me. I am in the process of looking to grants to help our son Joshua. We want to do what we can to try and bring some comfort to him and ease some of his burdens. He had to come back home & live w/us because he wasn't able to care for himself. Financially it is difficult. He has state help & we are thankful for what that is but it isn't enough and because of the cost Joshua has not been able to receive care at times. There are several things if we could get help for him that would remove some stress, bring some comfort. His bed is broken down. His teeth need care. Help with the cost of chiropractic care, this helps him. These are just a few things we know would help Joshua. Our son has been suffering with this for 15 yrs. It began when he was lifted up by his neck during a basketball game then, a few yrs. later he flew 80' in the air & landed on top of his head when snowboarding. He then got hurt while helping his dad cut firewood and few yrs. later he was in a terrible car crash that jammed his shoulders up to his neck and with internal injury to his intestinal tract. The pain started with the 1st incident then with the others following it was greatly compounded. He's had pain induced seizures and flares that cause his neck, feet,toes & ankles to swell to size like an elephants with bruising, ulcers making holes, & the skin so shiny and peel off. When that happens he can't hold his neck up at all even lying down is more painful & he can't stand or walk w/o help or an aid, socks or shoes, nothing can cover or touch his feet. His toes look like they could bust as does his feel ankles & neck. It has now gone full body and more internal complications. He's lost some hair & teeth because of it. For several yrs. he wasn't even able to go outside because the air hurts him as does wearing clothes some times.  During this time he also had been treated for Lymes Disease which is gone now. After several yrs of going to doctors to find out why he was in pain with these symptoms it was diagnosed. I had gone onto the internet,got information and made contact with the RSD Association. I have spoke with them several times and have received from them much information & continue to. I told them the dr. Joshua was seeing at that time had never heard of RSD and so was having a hard time believing the diagnosis on his medical record. They sent me information to give to Joshua's dr. about it and also info that was just for the treating dr. with a letter from them w/their contact # & e-mail for her to be able to contact them if needed for any questions.  When I went to the office with it the dr.'s reply to me was " I am too busy, I don't have the time and would not take the information We had never heard of it before & didn't hear of anyone having it until one day in 2009. We live in a very small town in northern michigan. The hospital & dr.'s in our area "haven't heard", "don't know much about it" or "how to treat, care for..." so it led to some treatments that brought on toxicity reaction in his body med to med & body to med that made him very sick. My heart goes out to all who suffer with this. From our experience we have not only seen the debilitating effects of this disease but have endured with our son the cruelty of the medical staff & EMT's because of their lack of knowledge about it accusing them of being "pill seekers"," faking it", "all in your head" inspite of the evidence before their eyes. And how it is sometimes with people, "can't see it, don't believe it". A dr. stopped seeing our son because "I don't have time to learn about this". Sometimes he hasn't been able to make his dr. appt. because of how he is feeling that day. If he had to cancel/reschedule a total of 3 appt.s & not in a row, they stop seeing him. They feel punished. Their days, hr's are unpredictable. Dr. appt.'s are our sons main outing over the yrs. Compassion, genuine caring, respect is not easily seen the world of disease, disability. It is very sad. It is our faith in Christ and His grace that is our strength.
Dr. Santos I thank you so much for taking the time to respond to me. It means so much to hear someone in the medical field knows and cares. It also shows me that you care as a person.  How much awareness of this disease do you think is out there?
God Bless you,
Sue
  

[Dr Santos]

Hi,
How are you? patients with intractable pain syndrome or disease have incurable, extremely painful conditions, as evidenced by failure of various interventions to control the pain. Surgery, nerve blocks, physical rehabilitation, and weak opioids usually do not help.  Patients describe their pain as constant, debilitating, and potent enough to interfere with sleep and sexual function. The mechanisms of intractable chronic pain are complicated.
This link may help: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071146/
Take care and regards.