Ankylosing Spondylitis

[CharlieB]

Have any of you been diagnosed with this spine, or joint disease? If so, are you still able to golf? If so, what do you due to be able to golf?

It’s winter up here and I want to get ahead of it, so I can play next year.

Thanks

[iacas]

I'm sorry nobody's replied. It's a slow time of year, for obvious reasons.

I'm sorry if you're dealing with this, too. Obviously, I think everyone even among those who have it will have varying degrees. Some treatments though no cures seem available. I'm not saying things you don't probably know.

Best wishes.

[boogielicious]

On 12/21/2022 at 10:23 PM, CharlieB said:

Have any of you been diagnosed with this spine, or joint disease? If so, are you still able to golf? If so, what do you due to be able to golf?

It’s winter up here and I want to get ahead of it, so I can play next year.

Thanks

Sorry about your diagnosis. I have osteoarthritis in my knees and big toe. I also had a spine injury and SI joint injury when I was in high school. My physical therapist have showed me over the years that strengthening the support muscles and working on flexibility are the best ways to manage the affected areas. So for me, I work on leg, core and lower back strength for support and do yoga type stretching for flexibility. 

Have you spoken to a physical therapist? I would recommend giving them your goals and then have them give you a plan to manage the injury.

[CharlieB]

Thank you for the replies. I have a appointment with the  Rheumatologist in March, but I would like to get a head start on a exercise program, so I can golf this year. I also having a bulging L5 in my back, so I don’t want to make it worse. Last season was brutal only playing 27 holes. I love golf, as I know many of you do too.

Happy New Year!

Charlie

[dennyjones]

7 hours ago, CharlieB said:

Happy New Year!

Charlie

Same to you!  Good luck.

[woodzie264]

7 hours ago, CharlieB said:

Thank you for the replies. I have a appointment with the  Rheumatologist in March, but I would like to get a head start on a exercise program, so I can golf this year. I also having a bulging L5 in my back, so I don’t want to make it worse. Last season was brutal only playing 27 holes. I love golf, as I know many of you do too.

Happy New Year!

Charlie

I was going to make sure you’ve gotten hooked up with Rheumatology…they have some newer DMARDs that came out last year that are supposed to be helpful. Being in Ortho, I will see and diagnose AS after ordering the labs, but those meds are outside of our scope so I don’t know too much about them, only that they exist.  We refer to Rheum at that point.   NSAIDs prn for pain, your PCP/orthopedist can write for a steroid taper if you’re really hurting, but as others have said, PT is your best long term option.

[CharlieB]

The only thing I take now is Tylenol. I have to protect my GFR. Getting old brings on several challenges, but I just keep on going. Hopefully I’ll be around long enough to shoot a round equal to my age. If I wind up not being able to play the big course, I will become a very good putter.

I can alway’s play miniature golf, if they allow carts. LOL

Thank you for the information.

[CharlieB]

I went in for my appointment with the Rheumatologist. A blood test and X-rays came back positive for AS. My SI joints are totally fused. Is it possible to golf with this disease? The doctor wants me to take a new injected medicine. My insurance doesn’t cover it, plus it’s $2500 twice a month. It doesn’t cure it, only slows down the progression. It’s going to kill me not being able to golf! Not looking for sympathy, just another person who has this and their experience.

[StuM]

42 minutes ago, CharlieB said:

I went in for my appointment with the Rheumatologist. A blood test and X-rays came back positive for AS. My SI joints are totally fused. Is it possible to golf with this disease? The doctor wants me to take a new injected medicine. My insurance doesn’t cover it, plus it’s $2500 twice a month. It doesn’t cure it, only slows down the progression. It’s going to kill me not being able to golf! Not looking for sympathy, just another person who has this and their experience.

I know nothing about your diagnosis but understand the desire to continue golfing.  I did google it and I have had occasional back pain but I think that pales in comparison.

you might contact the manufacturer of the drug, sometimes the have programs to reduce the cost.  If it can slow the progress that is a positive.

good luck

Edited April 16, 2023 by StuM
Fixed typo

[Old1964]

I feel for you and hope you have the opportunity to slow the progression of your AS. Did they offer you better pain meds? Though they can dull your senses and make you sleepy there is a ton of pain relief that could be gained with tramadol (pain relief through anti-inflammatory properties) percocet. 

Another procedure that is often overlooked especially when you have appointments with neurosurgeons (as they usually just want to surgically "fix ya") is RFA.

Radio Frequency Ablation - is a pain-relieving process in which they insert hollow needles along your spine identifying sensory nerves (not motor nerves that control your movement) under fluoroscopy. You are awake, mildly sedated, and then they "burn" the nerve - stopping the nerve from sending a pain signal to your pain. My procedures were very beneficial dropping my felt pain by 70% and lasted for between 11 and 14 months. 

Loving golf is a serious condition. Hope you are able to get some help. 

[CharlieB]

On 4/16/2023 at 3:35 PM, StuM said:

I know nothing about your diagnosis but understand the desire to continue golfing.  I did google it and I have had occasional back pain but I think that pales in comparison.

you might contact the manufacturer of the drug, sometimes the have programs to reduce the cost.  If it can slow the progress that is a positive.

good luck

S.E. Michigan north of Detroit. I was born in that area many years ago(Flint). My dad was transferred here to Wisconsin back in 1957.

Thanks for the replies, but I’m not going to give our children’s inheritance to a drug company on a “Might slow the progression” hope of a generic drug. I was fortunate to play a lot of golf courses in my life. I was just hoping to find a person who is, or had gone through this.

[woodzie264]

1 hour ago, CharlieB said:

Thanks for the replies, but I’m not going to give our children’s inheritance to a drug company on a “Might slow the progression” hope of a generic drug. 

I’d feel the same way. Waaaaay too much money, but if you have that kinda money, you may feel differently 

[abeli545]

On 4/16/2023 at 2:52 PM, CharlieB said:

I went in for my appointment with the Rheumatologist. A blood test and X-rays came back positive for AS. My SI joints are totally fused. Is it possible to golf with this disease? The doctor wants me to take a new injected medicine. My insurance doesn’t cover it, plus it’s $2500 twice a month. It doesn’t cure it, only slows down the progression. It’s going to kill me not being able to golf! Not looking for sympathy, just another person who has this and their experience.

I hear you, that price is ridiculous. I’ve been dealing with AS pain for a recently, and it really messes with your game. I tried everything—painkillers, stretches, you name it—but honestly, cannabis helped me more than I thought. It didn’t take all the pain away, but it eased the stiffness and helped me move more freely, which is huge for golf. I could actually swing without feeling like my back was gonna snap.