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What to do when pain is too much #284398 08/08/20 10:59 PM
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Sean O Offline OP
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I am in a lot of pain. I was diagnosed in 1991 and had this disease for several years before that. The pain now is just the usual, but the usual is bad (sacroiliac). Some morphine would probably do the trick but I only have Tylenol 3s.

My doctors are really tight with painkillers and I am just taking Celebrex and the occasional T3. Also I take Tylenol if I am not taking a T3.

I Feel like am wearing out my partner and family with mentioning my pain and I just feel stuck.


Male, mid 50s, Dx Reactive Arthritis 1981. AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Some bowel issues, anemia. Inflammation of the joints in hands and feet.
Re: What to do when pain is too much [Re: Sean O] #284399 08/09/20 12:22 PM
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WhiteCell Online
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There are options. Do you have an MD who would offer you injections into the area of pain? Or a pain specialist? I would recommend against morphine and target the area and the inflammation directly. Epidural injections, nerve blocks and others might help. Muscles nerves get bruised due to the lack of oxygen which is a result of chronic pain. Getting a "break" from the pain allows them to heal....but it takes time. I do hope this helps. If the pain abates work with a person who can get those muscles stretched out...let us know? I see you are in Canada. I would get this solved sooner than later.

ps. I would approach the doctor at the same time about a biologic with your symptoms. Give it time to work if you elect to go with one.

Good luck.

Last edited by WhiteCell; 08/09/20 12:23 PM.

Diagnosed AS 2001.Remicade 2002 - 5mg/kg every 7 weeks.
Right Eye Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Cardiac Stent to RCA 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: What to do when pain is too much [Re: Sean O] #284400 08/09/20 01:44 PM
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I did a little research. There are several pain clinics in Toronto. It is important for you to "track" your pin.

Time of day.
Location of pain
Any radiation to other areas
pain level 1-10

anything you did to relieve pain. meds, ice, heat
did that reduce pain 1-10.

interrupting sleep?
interfering with diet, work, activities of daily living

keep a log...this is important for you to reveal to your practitioners.


Diagnosed AS 2001.Remicade 2002 - 5mg/kg every 7 weeks.
Right Eye Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Cardiac Stent to RCA 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: What to do when pain is too much [Re: Sean O] #284401 08/10/20 02:58 AM
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regarding relationships, I tend to not talk to my spouse, family, and colleagues about pain. They really can't do anything. I do talk to a therapist, I have one person in my family that I share things with because they don't seem to internalize it.

I'm 100% certain my spouse knows when I'm really having a tough time. She is there for me when things get really acute/bad. but for chronic pain, I don't mention it.

also, I find that i'm a bit too on edge and less patient and probably less empathetic when chronic pain is at a higher level. when she tells me that I'm not being nice, that's a clue that I'm not managing my pain well and I need to talk to someone. the last thing I would want is to take my pain out on my loved ones.

this isn't easy.

Hope that helps.


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: What to do when pain is too much [Re: Sean O] #284402 08/12/20 10:29 PM
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achala Offline
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A good one.
As much as crucial would be not to internalize that experience yourself. Isn’t it too much of a parallel? Autoimmune & internalizing on oneself?
Once I had a chat with yoga teacher after a sessions. It was 2 years ago when I was unable to move my neck and sleep, uveitis every month. She said: I know 2 people with your condition. One is working in the office and cries with pain. The other is in secret service jumping from helicopters and somehow beats it.
Your mind can sabotage you big time.

Last edited by achala; 08/12/20 10:30 PM.

diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with AAU Nov 2017 (7 flares so far)
Eosinophilic Gastritis
Sulfasalazine 3g 08.2018-05.2019 (worked for AAU & peripheral)
Supplements:C/D, omega 3/Probiotic/ Mediterranean NSD/curcumin
swimming/yoga/pilates
Predonisone in case of another AAU flare
Re: What to do when pain is too much [Re: Sean O] #284425 09/17/20 05:17 AM
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I am sure the mind is one part, but of course no two peoples experiences will be the same.

The reason I am replying to this is because it's 1am here and I am rolling around in pain unable to sleep with few options. My best friend went to a pain clinic for his migraines and after failing to find relief through the new drug free ways, he killed himself.

Obviously you'll never be treated by someone suffering from chronic pain so therefore you will never get any type of sympathy that evolves into anything useful. Especially in Canada, a place where doctors will write you a prescription for Tylenol.

Re: What to do when pain is too much [Re: Sean O] #284426 09/17/20 05:42 AM
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I still have a hard time trying to take seriously a doctor looking me in the eye and saying 'you're going to feel so great being pain free that you're going to go crazy for heroin..'

I remember taking a Tylenol-3 the hospital gave me once, and it was emotional. First time in years I wasn't in pain. Amazing feeling.

But yea, welcome to Canada. Enjoy Yoga, talking it out, and healthy meal planning at a pain management center.

Re: What to do when pain is too much [Re: Sean O] #284428 09/18/20 07:13 AM
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I have had to fight like the devil to keep my meds but I have so far because in part due to not needing an increase in 4 years and having a perfect record of compliance and was blind tested for addiction and told my risk for addiction was zero. I didn't know what was going on when I was drilled by a trained psychologist at the pain clinic. But its been a constant fight to keep my meds and I'm the only one now at my GP to have meds over the dumb CDC limit. But my spine is nearly completely fused, my knees, hips, big toes are all bone on bone, had hip replacement in 1988 at age 34 (I am 56 now). Been disabled since 2015, with both social security disability and my work private disability but its still half of what I used to make.


Dx w/ AS in 1985. HLA-B27+. Left total hip replacement in 1998, lost 2" of height due to osteoporosis. Relevant meds include Remicade, Oxycontin, Percocet, Lyrica, Soma.7 hour spine fusion surgery for cervical spondylotic myelopathy and radiculopathy but have residual myelopathy. I have generalized osteoarthritis and have worn out hips, knees, big toes, and some fingers are fused or growing bones. Disabled since 2015. Chronic pain patient on a high dose of opioids. Live in zero gravity chair.
Re: What to do when pain is too much [Re: Sean O] #284429 09/18/20 07:17 AM
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I kept a very detailed pain log and researched all my conditions and have a 50 page PowerPoint I prepared for my doctor to help him defend my case if he ever gets the heat. I'm on a total of 20 prescriptions for all my orthopedic and neurological problems, insomnia, asthma, high blood pressure, high cholesterol, high triglycerides, etc. I probably should be dead but I'm a fighter.

Last edited by Jeffn; 09/18/20 07:18 AM.

Dx w/ AS in 1985. HLA-B27+. Left total hip replacement in 1998, lost 2" of height due to osteoporosis. Relevant meds include Remicade, Oxycontin, Percocet, Lyrica, Soma.7 hour spine fusion surgery for cervical spondylotic myelopathy and radiculopathy but have residual myelopathy. I have generalized osteoarthritis and have worn out hips, knees, big toes, and some fingers are fused or growing bones. Disabled since 2015. Chronic pain patient on a high dose of opioids. Live in zero gravity chair.

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