(Part 2) Living with axial spondyloarthritis (axSpA) - Breon White

[@coachjoachimroomaney793]

I think that the focus on blaming smoking for server flares is absolutely incorrect. I can say they it could be more of a problem with things that you allergic to and you just do not know. You also get a slow allergy reaction which is mostly never said by design. That being said, if you are craving a food way to much, it could mean that food is your allergy. They same goes for over craving with smoking, like chain smoking.

[@jd-xu4pu]

mine is also low bone density and neuropathy

[@johns4412]

GPs rarely have any idea about exercise programs

[@Chiroman527]

Very Spot on comment! Being in NY in the USA, and a sufferer o AxSpA (Spinal Spondylosis) and Dextroscoliosis, my experience is that GPs are lucky to know much about this Disease at all. I have consulted Neurologists (3), Rheumatologists, referred to them by my Pain Management - Phsyiatrist Doctor I have been seeing since 2012. Correctly stated by this PT fellow, is that There is No Cure for This, only Pain Management. I'm 72, a male, retired since May 2021, primarily bc of the Chronic Pains and terrible stiffness of these conditions. Combined with aggressive Degenerative Disc Disease which is progressing, I have a number of sites of mild to moderate Stenosis (pinched Spinal Cord Nerves). All of the above wreaks Havoc with my well being. My case is classic, in that, it started at The SI Joints (sacroilitis) and traveled up the spine to the top of my head. Lastly, I have considerable Cervical Instabilities (CI). CI contributes to affecting the Vagus Nerve which controls the parasympathetic Nervous System . Tinnitis, Sinusitis, TMJ issues, Chronic Occipital Headaches, Chest pains form Costochronditis {affecting the rib cage / breathing), IBS, and Bladder/Bowel Incontinence are effects form CI. I fish the InterWeb for research and help on any kind. I take mounds of supplements in the hope I find a "magic" pill. Some help, some do nothing. This fellow mentions that he has people that have "run Marathons with AxSpA. I can't walk 5 Blocks without major Fatigue. One of the worst effects of this, apart form the terrible stiffness, is The Chronic Fatigue - sometimes I feel like I'm going to die with the tiredness. FWIW I came across a Carpenter with lots of OA in his joints. He recommended taking 2 Advil in combo with 1 XStrength Tylenol. That has helped me on the particulalrly bad days. Adcil works on Inflammation, Tylenol works to deal with the Referred pains generated by the Central Nervous System.

[@irw4350]

nothing useful here - sorry - it was the axSpa that stopped me doing my exercise - not the other way round. You cant cycle to work or go to aikido classes if you are in agony after 10-15mins. I used to be super fit, now I just try to make the best of things & inject amgevita - which TBH is way better than any amount of stretching & exercise.

[@coachjoachimroomaney793]

I swim to exercise. But I understand exactly how to swim without hurting myself even more. I also think that not exercising can be very good for you if you are having bad flares. I think of stretching when my muscles have a problem in them - sometimes stretching does nothing. I do only stretch sometimes and no exercise. Its like they say, personal you plan according to your bodies specific needs accord to your condition. I stopped running now for more than 8 years. I only pretend run inside of the pool in the deep end, holding onto a float, just to strengthen my leg muscles.

[@irw4350]

@@coachjoachimroomaney793 Hi - yes, agreed - I do stretches, which helps sometimes with specific muscle groups. TBH the best thing ever is morphine - it makes you feel pain-free and normal again. The problem is that the benefits disappear in just a few days & then you have to wean yourself off and back to square one. I rely on amgevita (humira) paracetamol & gabapentin and exercise - walking - slowly and when I am able.

[@AmitPrajapati-l6g]

Ankylogics spondylitis and axspa are same?

[@coachjoachimroomaney793]

Prof told me that they just going to change the new name which is AxSpa because it describes the disease much better and the other old name Ankylosis Spondylitis. This is because the word axial mean of the whole body. The other name only describes back problems, where most patients got many other body parts involved at different times, so you can have a server flare up in your feet, eyes, skin, stomach or ant other part and go to see the doctor but the diagnosis comes up false diagnosis just because your flare up isn't on your back in that specific moment. Usuallty you can find clues in you other family members, you is happening with their body.

[@AmitPrajapati-l6g]

Thanks mem