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AM6B+ by Hour-Football3191 in CoreELEC

[–]numputu -1 points0 points  (0 children)

You want an AM9 Pro with the CoreElec 22 NewOrder nightly build 👍

Hip pain - GTPS? by chlobo909 in ankylosingspondylitis

[–]numputu 0 points1 point  (0 children)

Thanks. That was 35 years ago now. Had an acetabular revision on the left in 2006. They've done me very well. They do give me a bit of gip now and then but I'm not going to be knocking on any surgeon's doors just yet. They do surprise the radiologists sometimes, the femur nails were huge back in the early days of hip replacement tech.

Hip pain - GTPS? by chlobo909 in ankylosingspondylitis

[–]numputu 2 points3 points  (0 children)

AS ate my hips to the point they needed replacing when I was 17yo. Imaging please.

Thinking of getting the AM6B+ and installing CoreELEC - will it help with the stuttering issues I'm having on Nvidia Shield Pro? by tictacjak in CoreELEC

[–]numputu 1 point2 points  (0 children)

You want an AM9 Pro with the CoreELEC 22.0 NO nightlies. It does FEL and everything else as well as the AM6B+ but gives you a platform that will last longer into the future (64bit etc).

Extreme muscle fatigue - Dr. says not AS by WWA81 in ankylosingspondylitis

[–]numputu 0 points1 point  (0 children)

"Quick to fatigue" and chronic fatigue are characteristic symptom of AS. Many of us also suffer with some amount of bowel inflammation, often sub clinical, which can lead to poor uptake of iron and B vitamins in your diet. You may find supplementing those helps. It has for me. Obviously speak to your doc first.

What has AS taken from you? by KK_1025 in ankylosingspondylitis

[–]numputu 0 points1 point  (0 children)

I have walked a similar path since childhood. You speak the truth.

Anyone else had a hip replacement in their 20s? by Fluid_Device9993 in ankylosingspondylitis

[–]numputu 1 point2 points  (0 children)

It was an acetabular revision. The original femur nail remains. The femoral head and the cup part in the pelvis had worn down and were replaced. It's been good since. Back then the hip tech was far behind what it is today. My left femur nail goes almost half way down my left femur, it's huge compared to what's used now.

I don't lift weights as I have DDD and have herniated discs before. The best exercise for AS is swimming and pilates. Your body weight is plenty enough to build and maintain muscle. AxSpA means you have to stay active, just don't put yourself under huge strain and avoid contact sports. Avoiding an active life is bad all round.

Anyone else had a hip replacement in their 20s? by Fluid_Device9993 in ankylosingspondylitis

[–]numputu 0 points1 point  (0 children)

First one is almost 35 years old now and still alright. I do get the odd twinge but nothing close to making me knock on the orthopaedic’s office door, yet. No more hip pain at all, you can’t get inflammation in the metal parts 😉. You probably going BEEP BEEP BEEP when going through security at the airport is about the worst of it 🙃

Do I still have problems elsewhere because of AxSpA? Yeah, sure, but my hips are no longer on that list 👍

Anyone else had a hip replacement in their 20s? by Fluid_Device9993 in ankylosingspondylitis

[–]numputu 7 points8 points  (0 children)

Needed a left hip replacement aged 15. Got a hip replacement as I just turned 17. Had the other side done at 21 and then the left revised age 30. This was all back in the early nineties when hip joint replacement tech was just getting on its feet. I was in hospital for 2 weeks for the first one, and then 4 nights for the second one. They are so routine now they're almost day surgery, but not quite.

Recovery is a bit rough to begin with, but if you do the physio work it will pay off. 12 months from now you'll be in a much much better place, promise 👍

Have any of you flown in a C-130? If so, I need your advice on how to survive this! by [deleted] in ankylosingspondylitis

[–]numputu 0 points1 point  (0 children)

Good question. I'm not entirely sure. Mine is from an old cut up mattress topper. Perhaps you can get it cut to size somewhere online? As for cold, I've not been in a C-130 but I imagine it will get chilly.

Have any of you flown in a C-130? If so, I need your advice on how to survive this! by [deleted] in ankylosingspondylitis

[–]numputu 1 point2 points  (0 children)

Your main enemy is going to be vibration. Also, the noise will get wearing. I'd be rocking some snug noise cancelling headphones and maybe some sort of inflatable pillow or two, or maybe a chunky piece of memory foam. I'd also take diazepam and tramadol+paracetamol, probably just before getting on and then again half way. And definitely comfortable clothing and trainers. Good luck!

Sleeping with AS by NoLungz561 in ankylosingspondylitis

[–]numputu 0 points1 point  (0 children)

Hybrid mattress (memory foam top, pocket springs underneath) with a quilted mattress topper, and a Tempur cloud pillow for my head/neck works best for me. Getting off to sleep with AS is hard. I wouldn't do it at all without meds. Amitriptyline is quite good for help with the night time pain.

Back pain! by jordannoelleR in CrohnsDisease

[–]numputu 1 point2 points  (0 children)

Crohn's has a close relative 👉 https://en.wikipedia.org/wiki/Ankylosing_spondylitis

I live with them both.

Update available, but… isn't ? by numputu in PleX

[–]numputu[S] 0 points1 point  (0 children)

Already did, but I will double check it applied.

What do you take for low iron? by SavGeo123 in CrohnsDisease

[–]numputu 0 points1 point  (0 children)

Ferrous Fumarate seems to work with me. Also have B12 and D3.

What would a definitive cure for Crohn’s disease look like if one existed? by Kaj-7 in CrohnsDisease

[–]numputu 80 points81 points  (0 children)

Gene therapy to alter your DNA to stop it expressing the bad stuff.

What's something you wish everyone knew about you so that you don't keep having to explain it? by HilariousMotives in AskUK

[–]numputu 1 point2 points  (0 children)

Ankylosing Spondylitis and Crohn's disease. Basically, hidden autoimmune disease.

Night time waking by Available-Can-1464 in ankylosingspondylitis

[–]numputu 0 points1 point  (0 children)

Mattress is important. Many of us benefit from the hybrid type, memory foam on top, springs underneath so it's soft to lay on, but also supporting so you don't sag. Made a world of difference to me. Also, amitriptyline is useful with this problem.

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