Spondylitis

[Coral39]

I have had this for well over 15years the pain was so bad back then I was on and tried everything it had gotten easier over the years I was over 30stone I lost slot of weight I’m now 21 stone the pain at one point disappeared then bout a year ago it came back after all the weightloss and now I have arharitis in almost every single joint I have my knees to as well as my shoulders but now I can’t take no pain relief as I atrial fibrillation and I don’t want anything to interfere with the meds on for that as I’ve had same prob with other meds to so much pain I have no choice to battle on

[Bananas5]

Hello Coral39 and welcome.

Do you mean Ankylosing spondylitis?

If so my husband has suffered for over 30 years with it. Not too painful in the early years but as the condition degenerated so the pain increase. Many years of strong meds including opiates have taken their toll and now he is coming off them all. So in a similar position to you.

He also broke his back. Has many associated conditions...IBS, twisted colon, etc

He has acupuncture every 3 to 4 weeks which does help enormously.

Now the AS has spread up to his S5 and the Myelin sheath surrounding his spinal cord is shredding. His prognosis is very poor but we live day to day. We can still have a laugh and giggle together!

Are you receiving any treatment? Or been referred to pain clinic?

x

[katidid in reply to Bananas5]

You can have Spondylitis (also called Spondyloarthropathy or Spondyloarthritis) without progressing to AS. Spondylitis can effect all joints, not just the spine and sacrum, and often involves the ligaments and tendons (enthesitis). From what I have learned as someone who has it, doctor's really reserve AS for when the calcification of the bone occurs. "Techinically" I have AS but I only have inflammation, no bone fusion or compression. I also feel it equally in my spine and other joints. To make it even more confusingh, they put all of this under Psoriatic Arthritis - which is silly and confusing.

[MrsM7]

Have you see a pain specialist. There must be something you can take.

[CtKathleenUSA]

Hi Coral, I have had AS for years. I’ve had good stretches of time, challenging, and extremely painful periods, sometimes with additional troubles. Recent flares have been worse, possibly because I’m getting older.

I’ve found that increased stress makes my illness and pain so very much more difficult. Are you under more stress?

About 10 years ago, Yale rheumatologists strongly informed me that losing weight would reduce my pain considerably. Such a great incentive to lose weight!! I’ve lost almost half my body weight and what has happened is very different than they described. The pain is still there. I’m afraid the weight may have damaged joints in my lower limbs and feet, but it’s not confirmed.

The biggest change is my freedom to move. Moving and exercise is the best pain reliever, if I’m well enough. Have you tried some gentle physio therapy? You may find some real relief. Aqua exercise helped me to build strength, balance and years of low pain. Also, it doesn’t have awful side effects meds can bring.

Acupuncture has also helped me in the past. It worked @ 2 years, then stopped. I’ve gone back to it several times. It also gave a wonderful energy boost- equaling move movement and more pain reduction.

I have heard anti-inflammation diets have worked miracles for some. I cannot handle a strict diet, but have successfully eliminated all sugars and white flour, with other inflammatory foods. My gut (and sugar levels) are much better. When I eat inflammatory foods, I notice the difference with more pain the next day.

For meds, please refer to your physicians. Get new referrals, if necessary. I successfully used pain relievers for years. Unfortunately, I have been extremely ill the past 5 months due to the side effects. I may never have that option again and don’t recommend their use, given the consequences.

I hope you can find some relief in my experience. Please don’t give up! You don’t deserve the suffering!

[katidid]

Hi there,

Curious: were you never put on TNF inhibitors or other immune suppressants to treat the disease? Seem pretty common place now to use those.