Looking for help
Hello all. I’m not sure if this is the most active forum for those suffering with ankylosis spondylitis but I’ll give it a shot.
My brother has been suffering for 15yrs + with this illness. He requires a scary amount of medication. All kinds of side effects, can barely move, is freezing 24/7, medicated to the point of being unresponsive after 6:30pm.
Is this normal? He doesn’t want any help from me. He’s very stubborn at 53. Has been for a long time. Incredibly depressed due to mobility, pain and side effects.
I can post all the medication he takes....I think it’s wrong and almost criminal.
I’ve been told that Canada’s’s leading specialist on this illness is in London Ontario.
Can anyone provide me with her name?
Pattibwell
I very sorry to hear about your brother. I wasn't diagnosed until I was 65 years. I went to a pain clinic for many years and was told I had osteoarthritis and fibromyalgia and every doctor I saw I told them my ankles would slip out of place. I the first time I was sent to a pain clinic I was 54 and they sent me to an orthopedic doc. to make sure I didn't have stress fractures or deformities. I had been x-rayed many times but this time the doc. said I had a kyphosis (slight) and several places of spinal stenosis. Luckily I had been an athelte my whole life so I just kept up my regular work out routine. I've had to adjust over the years as I got stiffer I learned that I mentally had to stay ahead of the pain by controlling my breathing, not panicking when I fall. If I get out of control, it wins. I broke my arm 2 years ago and the x-ray report said I now have an exaggerated thoracic kyphosis. I getting worse.
I know the depresstion a person goes through when they know they're not like everyone else. The pain can make it so some mornings you can't walk and you fight for every step. What helped me the most was a service dog. If there is someone who can care for dog and if he likes dogs it might help him to think of other things besides the pain. But, you will need help with it when he has a flare. If I can walk I choose to take full care of my dog because if gets me out everyday. I wish you all the luck in the world with your brother and I do hope he feels a little better soon.I wasn’t planning to share the meds he’s on. I’m just trying to help through learning. I see some people managing with exercise and cannabis and then I have my brother taking 18 pills a day and being essentially a walking zombie after 6pm each day.
I’ve been told that the leader in Canada for research was this female Dr in London Ontario. Was wanting her name.
If you say it’s normal to be on 18pills per day for 15yrs then I’ll shut up and watch my brother struggle and kill his quality of life with 6570 pills per year
- Thanks for starting this thread. I'm not aware of the doctor you're looking for, but I'll keep searching and let you know if I can find anything. In the meantime, we have this article about finding a good rheumy that might be helpful: https://ankylosingspondylitis.net/living/finding-rheumatologist Just to piggy back off of something Rick said, treatment for AS is not a one size fits all approach, so what's right for some may not be right for others. Many people here have seen multiple specialists before finding the treatment that worked best for them. I wish so much I was able to give you more concrete advice, but I can proved some articles on exercise and medical marijuana that you mentioned before. I'll post a few links below.
Medical Marijuana:
https://ankylosingspondylitis.net/living/medical-marijuana
https://ankylosingspondylitis.net/medical-marijuana
https://ankylosingspondylitis.net/stories/medical-marijuanaExercise:
https://ankylosingspondylitis.net/exercise
https://ankylosingspondylitis.net/living/costochondritis-pain-stretches
https://ankylosingspondylitis.net/exercise-tips
https://ankylosingspondylitis.net/living/exercise-after-diagnosisI hope these are somewhat helpful and that your brother is able to find some comfort and relief soon.
Warmly,
Anthony (Team Member)
There is no one or best way to deal with AS. You are asking questions that a doctor who is familiar with your bother and his case can answer. As fr the number of medications I will tell you at I take 18 pills each day, which may be a lot or a small number depending on one's point of reference. I tret my 3 autoimmune conditions with both pills and injections and that may seem like a lot or about right depending on the dosage and functions.
Two more things. First, under no circumstances should you post the names of the dosage of his medications. There is a privacy consideration and that would violate the rules of this site. Second, even if you did this would not be helpful, we are not doctors and we would not comment even if you did.
My best advice is that you attend his doctor's appointment with him and ask his doctor these questions directly................................ rick
