Not sure how to help pain

[stanleyars]

I have posted here before but under a different name I think it was asetter. Anyway's that is not important. I am 23 years old and suffering from LOBPI. I was 9 lbs 13ozs when born and was vaginal delivered with forceps help. As a child my parents were unaware of the severity of my injury. I saw neurologists as a child. About 8 months ago I was informed for the first time that I have BPI. My mom had no idea that this was what was wrong with me.

I am now in a lot of pain. I have huge knots on my back by my shoulder blade. I tend to hold my arm up as my shoulder hurts to hang. Also I get sharp pains from my shoulder to my elbow and occasional stingers all the way to my hand making it hard to move fingers. In order to sleep at night I have to wedge a pillow between my neck and shoulder to sleep on my side. And if I sleep on my back I have to put a pillow under my arm to keep my shoulder from dropping back and causing pain. My doctor has given me Naproxen for inflammation and Skelaxin to help with muscle pain. Neither of which help the pain at all.

I live in Kansas and have not been able to find a BPI doctor here. I just started a new job in August and don't have enough leave time to take off for an type of surgery if that is what I would need. I would love to go see Dr. Nath but it is not an option at this time financially.

Can anyone suggest what type of doctor I could see that could help control pain (Neurologist or Orthopedic??). I know I need to do some more checking on how my insurance covers PT or OT.

If anyone can give some advice I would appreciate it. Talking to people who have never experienced this do not understand the pain we go through everyday. My mom and husband say it will get better. Unfortunately it has only been getting worse. So I am now turning to my BPI family for support.

[Beckyerin]

Massage to work out those knots. Muscle tightness and trigger points/knots can be a source of pain. Massage is expensive, so this may not be an option for you financially.
I developed pain in the last couple of years. Not to knock doctors or anything, but the things that have helped the most were not procedures that doctors have done.
I use heat and ice which help. Currently I am seeing a chiropractor who is doing something called active release. Basically he kind of digs into my shoulder with his fingers while moving my arm. This has helped to decrease my pain so I would recommend that(if your not too sensitive)
Do you have health insurance? My insurance does not cover chiropractic but the chiropractor I go to bills it a certain way so that it is billed as PT which is covered so its affordable for me. If you go to PT, they can show you stretches which may help also.
Also some of you symptoms(stingers, shooting pain) may be nerve pain, which can be treated with nerontin/and or lyrica which do help some people.
Finally, there is a medical resource directory on this site where you can find a specialist so you could check that out.
I hopeyou find some help.
Becky

[Kath]

For Pain I have used Myofacial release, massage therapy and Active Release therapy.
All of these procedures have helped me from time to time.
I also take Vitamin B Complex and get B-12 shots monthly.
I don't know why the B-12 shots work but when I get them on a regular basis I don't get the zing/shock shooting pains.
I stopped getting them for years because doctors did not believe that they did anything.
They refused to prescribe them for me.
They would prescribe any pain pill they thought would work but not a harmless B-12 shot.
I finally fought to get them instead of drugs.

My family doctor gave them to me as a teenager to help with pain, shocks and cramping.
I can tell when it's been too long since my last shot because the cramping and zinging start again.
I know many physicians don't believe in them but I don't care, it works for me...

Check out the medical resource directory.

Kath/adult/robpi

[Kath]

Becky
I had Active Release therapy and feel it helped a great deal with pain.
You can't be too sensitive because it's rough and deep.
I did not have a problem with it at all.
My PT kept asking if he was hurting me but it really felt so much better after the treatment.
I am ready to go again but my PT dropped my insurance so I have to find someone new.
My PT was also a Chiropractor and that helped a great deal.


Kath adult/robpi

[hope16_05]

Amanda,
I would suggest ultrasound and massage. That helped me so much last year and now I keep my muscles in check with kinesio tape. Its awesome! I am almost 20 and have had pain in my shoulder since I was 13. Now I have it all in check! I saw an OT for this.
Another thing that might help is moist heat-- take a heat pack and wrap in in a wet wash cloth(microwave this first) and place it where it hurts. That might help but the ultra sound and massage would help a lot more. But its a start.

Good luck getting your pain to go away!
Amy 19 ROBPI from MN

[stanleyars]

Thank you all for some suggestions. I was unsure of the next step to take. I do have insurance and it is really good insurance as I work for a hospital. I used to see a Chiropractor and would get some relief. I was going two to three times a week. Sometimes the chiropractor made things worse though. I have access to doctors with my job, I just was unsure if there is a type of doctor people felt they got a little bit more understanding from. I also have access to PT and OT at the hospital but I have to have a referral, thus once again knowing what type of doctor to go to. I am tired of Primary care physicians. Any that I have been to know about BPI but yet know nothing in terms of what we go through.


Thanks again-
Amanda

[kissygoose]

I started with a Neurologist who started prescribing nerve pain meds. Unfortunately my dr. isn't the greatest so I still run into a lot of problems. Other than that I have no idea. I'm 33 and unfortunately haven't been able to get into any of the stuff the others have suggested. I do know I want off my pain meds badly

[hope16_05]

I got my original refferal from a family practice doctor. All you need is a refferal for pain and they can start seeing you. Then months later when I so my bpi doc I got a real refferal for splints and whatever else I might need. Now he just gives me a new one for a year at a time.

I would defineitely check into OT since you have access. Ultrasound and massage are amazing! As a followup I use kinesio tape and for me its great!

Good luck!
Amy 19 ROBPI from MN