Can anyone help me?what should I do?

Written by

Sun, July 05, 2009

HI, I have a question for YOU.I hope you can help,or give me some sort of advice.I am a disabled former Personal Support Worker (Health Care Aide).,I had to give it up,when my disabilities got too painful,and Im now on Long-term Disability.Permanently.

I have MANY health problems.Chronic pain, in my legs,from numerous LIMB LENGTHENING OPERATIONS when I was a teenager.Im 35 now.I was the first in Canada for my form of dwarfism,to have the operations.Im Hypochondroplasia Dwarf.I was basically a "guinea-pig",for my Doctors.Not knowing when the operations finished,it made me 8inches taller...but it would make me disabled,and have severe chronic pain for the rest of my life.I tried living a normal life,but my pain took over,and i am now on long-term Disability.I also,less than 1yr ago,got diagnosed with LUNG DISEASE, pulmonary SARCOIDOSIS.SO PAINFUL.Drs tell me it isnt...but since I had this disease begin,in Oct 08,Its nothing but pain.Breathing,and night/sleeping,have to sleep sitting up.I feel like my chest is crushing,feels like fluid in my lungs,chest/back.NO ONE believes my lung pain.Its killin me.(suicide is considered on a daily basis).

I have been on opiods for about 2-3yrs now...Ive started at the lowest,weakest and have gotten to where I am now.I am on Hydromorphone 8mg, about 8/day.(2tab-4xday),Hydromorph Contin 3/day, and Oxycocet, 5-325/ 4-6day....and I am in SO MUCH PAIN STILL! I am no longer getting ANY relief for my pain from my meds,and I go to a PAIN CLINIC,see a specialist..I had a good Dr,but he retired,.and now this new Dr just writes me the same script every month... he dosent want to change or help me.(my last visit,he recommended I move to dry UTAH,(Im in Ontario,Canada)..my meds arent working like they used to,or should.My body is used to them,from being on them for a few years.I havent been offered any other help or options or medications...I sometimes feel it is MY fault,maybe they dont believe my pain.Im hurting NOW MORE THAN EVER.I cant live like this.I consider suicide on a daily basis...thats bad.I want new meds,or something...I cant live in SO much pain anymore.My meds are only making the edge of my pain,1st thing in the morning,easier.The rest of the day,as time goes on,the pain gets worse,til night when I cry,and cant walk (arthritis),or breathe (Lung Disease).This isnt "LIVING" this is "LIVING HELL" Please tell me what you think......... thankyou. jane

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dockside

7/ 6/09 1:39am

Hi Jane (Liberty),

I am so sorry that you are suffering so much daily. This chronic pain site has many caring people and experts who will try to help you with your questions. I found this site almost a year ago and talk to others daily, not only about my pain but about my daily life and frustrations with being unable to do what I once did with ease.

You and I are both Canadians. I live in Quebec. I have learned that our American friends have most of the same issues with pain clinics and finding the right doctors for help.

It is 1:15 am and I can't sleep tonight because my back and leg pain is flaring too high so I thought I would check to see if any of my friends were still up who I could chat with for a few minutes to help take my mind off my pain. These wonderful people at the support group here called the Daily Grind, aren't available tonight so I began reading some of the new posts and came across yours Jane.

You have such unique issues to cope with that I can only imagine how hard and alone you must feel sometimes or daily as you say. I think though that severe chronic pain over a long period of time causes so many of our friends and family to pull away from us because they don't know how to make "it", the pain better. Many of us feel that we can't live like this, yet we somehow find the inner strength to hold on until the pain lessens. I don't know how I would have made it through last winter without this web site and the people here.

I truly understand your frustration with the pain clinic. I have given up on mine. I have a good family doctor who fortunately has treated me for long enough to know that my pain is sourced from physical problems and is well read on pain management. He is now managing my medication and sees me monthly (instead of every 6 months at the pain clinic). Do you have a good family doctor Jane?

I hope that some of the experts here will help you with your questions. I don't know if my response will help you but know that you are not alone. Thank you for being there for me tonight.

Take care and hang in there Jane,

DEB

Wendell707

8/20/09 8:04pm

Hello Ladies, i am sorry any of us has to put up with this cronic pain we are all different except for the pain we share.

We have to keep seeking a good Doctor,one that has compasion and listens to what we have to say because if we cant get our point across then we will be the one's sitting at home beside our computers in pain for the next month or untill we can see our pain management Doctor again.

My family recently took a vaction to Ocean City Maryland,my Wife wanted me to go along i told her i was in to much pain to get any enjoyment out of the trip.

She said take your pain along because all you will be doing is laying around and this vaction might help take the pain off your mind.

It dont work like that because the kind of pain we have dont ever get off your mind and it's the number one thing on our minds 24/7 .

I would much sooner stay at home and spend my vaction money on my percriptions because theres a chance of haveing a few hours of well managed pain so we feel close to normal again.

This web-site is sure a blessing to me aswell as it is to many outhers,alot of things we share prove we are'nt crazy and that alone helps all of us to get rid of our stress and sometimes thats just enough to enable me to fall asleep.I pray for each and everyone of us each night and thank GOD for this web-site.

Hang in there and know your not alone/

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