AS - doctors not wises - disasterous pain - dark life
Posted , 6 users are following.
Hi sufferers ;
AS could be very different throught patients ; it can present in chest pain like a sustaind heart attack !!
My mandibular hurt me because of chest hard pain like a heart attack , no medication .
my CRP is normal , in 30% situation CRP could be normal , like mine .
There is no joint in whole the body can be away of pain .
Please tell me your stories about sharp chest pain , hard living , chronic fatique , doctors don't understand your thinks just belive that 1+1=2 ! , not classic AS situations .
HELP me my brothers in humanity !
0 likes, 22 replies
peter21326 dr-haidar
Posted
If I am thankful about anything with this disease is that I at least did not start feeling it until I was past age 30. My brother is a full on bed-ridden paraplegic and my sister is getting there since she needs a walker to drag herself around the house so I have some understanding where I'll probably end up. But at least we all got around alright for the first 30-35 years of our lives. Everytime I hear some of the stories of others I realize that you have to grab some small victories wherever you can get them.
?Having said that, it is funny some of the "encouraging" things we hear from other people. I was a very active runner before I started having the debilitating pain in the lumbar spine. My doctor, in all of his wisdom, said "Come on man. There are 80 year old people running marathons. Whats the matter with you? Suck it up" Nothing like being called a weeny by your own doctor. Oh well.
gloria55119 peter21326
Posted
Change you doctor quick smart...anyone with that attitude...you don't need. He seems to have no idea what it takes to endure this disease...invite him to see your brother and sister..then he might understand and eat his words.
dr-haidar gloria55119
Posted
you said that you have hypertension , are you taking any NSAID?,these drugs cause hypertension .. and hypertension is contraindication .
i also suffer from hypertension and have not started to take mids yet .your experience please .
gloria55119 dr-haidar
Posted
Hiya, yes I have hypertension caused by an enlarged heart. No NSAIDs just Amlodipine and Tramadol for pain. It's now under control and rarely my BP goes above 130...hoping it will stay that way. I test it every day and so far so good. Do still have pain though especially at night when sleeping becomes a problem. Still can't walk more than a few steps, and struggle to sit for longer than a few minutes without changing positions. I.m coping but only just. My hands are a problem and ache all the time, ditto my feet and legs. I have 10 vertebrae affected by AS...four in my neck and three thoracic and three lumbar. My fingers are swollen and painful joints with protruding nodules and my legs are covered in lumps under the skin. Diagnosed Ganglioma. My eyes are sore and hard to open them when I wake up. Anyway...there's not much anyone can do about all this except to tell me to soldier on regardless.....Hugs to you..G
peter21326 dr-haidar
Posted
Yeah, you're right about this doctor Gloria. In his defense this was my GP a number of years ago before I got diagnosed. He is long gone now but regardless of whether I was diagnosed or not it was an amazingly flippant attitude to a patient's pain. I had the same reaction recently when I heard a therapist talking about the opiate addiction epidemic. In his mind there are only one kind of user of pain meds. It is the guy who broke his leg and was given pain meds to help and then decided it was fun to keep taking them. In his mind cancer was the only valid reason to take pain meds long term and even cancer patients need to suck it up and quit taking pain meds cold turkey. He couldn't fathom a chronic pain situation where taking pain meds was justified. Sometimes you just wish that God would reach down and give him our situations for just a month or so. Guaranteed he would sing a different song.
gloria55119 peter21326
Posted
Gee you are so right on all that. I guess it's not just doctors who tell us to "suck it up". I had to go to the big city for two days...arrived back last night. We got a local driver to drive us in my car for the four hour trip...and all was OK ish for the drive down. But on the trek back he decided to go "the pretty way" home. My daughter and I both told him that I can't do the many hills and bends which the "pretty way" has as I have to hang on to things to steady my body...but he wouldn't listen...then came the "suck it up " stuff....So by the time we arrived home I was in so much pain from muscle spasms in my shoulders and rib cage, arms and neck...So today I can barely move with all the sore bits everywhere...Why Oh why don't people listen..it beats me....Sore and angry right now. Had enough of suck it up....