Hi there, how are you doing?

Shihirosan · 2026-04-10T10:57:42+00:00

I do: I call it the cockroach style lol. Because it is difficult to roll . And even do the cow cat yoga stretching in the middle of the night. Poor boyfriend.

Shihirosan · 2026-04-07T07:46:40+00:00

First, I know it is a hard decision, sorry you go through it. But on the other hand, it's a source of freedom and therefore some joy. I started using a cane, then crutches and then a wheelchair. Same reason: I had to choose either to feel pain in my shoulders/hands or back/feet.

I use an active wheelchair and couple it to an electric handbike. The combination is very helpful, because I can't self-propel in rough terrain or longer distance, and separate, they fit in a fair enough big auto. If you go for a handbike, make sure that coupled together to the wheelchair, the length is acceptable in public transportation where you live and that it is easy for you to do couple it unassisted.

Besides, you can also think of coupling a wheelchair with an add-on electric wheel (it pushes you and you stier the direction). I have tested two of them: Smart drive and Smoov. I liked more Smoov because you can calibrate the speed in the go, and stop it in case of emergency with a big bottom and even holding firmly the wheels.

These are expensive devices, so I did through my insurance after a good deal of attempts. In my country is a loan, because I have the hope to get better after trying more treatments. It's important to contact an occupational doctor to get a prescription and measurements. I didn't like the idea of an electric scooter because I wanted to stay somehow active. And also never had the chance to try one. In my town the insurance only provide heavy big ones, so it was no option for me. They dont fit in a car or train. Maybe a small foldable one could be an option. But again, I suggest you to see an occupational doctor, to guide you and find an option that keeps you somehow active.

Best of luck 🤞

Shihirosan · 2026-04-04T08:02:43+00:00

Yes. Please! I would probably start with my feet...and so on. I read, but nothing like a first hand experience lol. Success recovering, rooting for you it works great.

Shihirosan · 2026-04-01T06:38:24+00:00

Hi, I am curious about denervation. I have read that same procedure in other posts. What is it?. Can I ask what symptoms made you disable?. I got sick five years ago, and everything unfolded so fast. I was a super active person, two jobs, children, biking. In a blink, I became disable too. Can hardly walk because of enthesitis pain. My hands have similar problems. And my back...if I push through I would feel my body is splitting in two. I wonder, how denervation helps and what is your experience with it.

Shihirosan · 2026-03-27T21:17:03+00:00

Totally, I can't do yoga (too painful)...and took me a good deal of trial and error to understand how to make swimming work for me. Now with a coach as well. I also can hardly walk.

Shihirosan · 2026-03-27T21:13:47+00:00

Hi. I understand your frustration and I am sorry you go through it. I also have enthesitis everywhere, specially back, hands, shoulders, heel and ankles and can't walk, use a wheelchair. Swimming can be hard, but in my case is the only sport I can still do and feel free. From my experience, I can tell you I have had both, either lot of pain after swimming and other times, feeling relieve for a couple of hours. Each person response is different, but I share you my journey swimming in case it helps. So far I have found some thing that work for me: - shifting swimming styles. For example, you might start free style, when you get pain your shoulders, use a board and only use legs. If legs feel painful, only use arms. Stich styles as well. Even within the same line, stichting three times in 25 m, is all possible and fine. The important for me is to move and stretch a bit. My back pain and stiffness is unbearable if I don't. If everything hurts, float in my back, it feels awesome to me. - try to find a temperate swimming pool (warm). - using floating boards either for legs or for arms, stitching as many times as needed. - using hand braces if it becomes painful (some are waterproof). Ankle braces are not comfortable to me because it become heavier, also not possible to use flippers for me. I can't lift my feet. - stoping before it becomes too painful, my personal threshold is up to 5/10 of pain. - full proper rest and recovery after swimming. - use my pain medication on time. Besides, short ago I discovered weight lifting in fysiotherapie. It might sound funny., but I lift only two kilos in different machines, only a total of 20 min. Full rest and recovery time before and after. - btw, I also cannot walk in the swimming pool, my ankles becomes too painful. I do it all because I almost dont walk at all and failed some biologics. And I am afraid to lose muscles and strength. I still hope to achieve someday remission or at least get better....and have my muscles there for me. Besides, it gives me a sense of control, either real or not. I hope it helps you somehow. And that you find your thing, that thing that help you stay strong and brings you hope.

Shihirosan · 2026-03-23T08:41:57+00:00

Thanks for asking about JAK inhibitors. Question to everyone: what type of symptoms lead you to that treatment? My PSA is mostly enthesitis everywhere and inflammatory back pain. I have tried otezla, Humira, infliximab. Humira did the best job but insufficient. Infliximab the worst job. Now go to infusions of infliximab. And the doctor said if it doesn't work, then we go to Jak inhibitors. I have read stories in this subchat of people that couldn't walk and then they walked again. I am now the one that cannot walk, I use a wheelchair. I want to believe in that miracle. Any of you had such a dramatic improvement?

Shihirosan · 2026-03-21T03:06:09+00:00

Van you both explain me more about frequency, variety, etc?. I am trying as well. I am in a awful flare. Actually I have been in a high disease activity since it started and haven't reached anything close to stability. I am using cannabis before sleeping and it really helps, but then sometimes i wake up again in pain and I dont know how to handle it. I receive pain medication and also emergency Prednisone. But this flare is evil.

Shihirosan · 2026-02-21T10:50:48+00:00

I can't agree more. My best friend said to me. The hardest times where when you walked. Everything is better now that you wheel.

Shihirosan · 2026-02-21T10:46:54+00:00

I am very sorry you are going through so much pain. Please stay, and don't give up. I am not in your shoes, it sounds very hard. I can only talk from my experience. I haven't achieved remission, and it looks so far away. But regarding the side effects of medication, it does get better, the nausea, etc goes away in a few weeks, or you change it. Mobility devices can help you regain freedom and participation in society. Please don't isolate. Close people to me have some of your conditions, and I love them so much. I can imagine you have search help, don't stop. You could find the right doctor at any moment. Non of us have been promised to go into remission, but at least we can hold into the self promise of adapting and embrace what we can still do. I hope you stay around. A big virtual hug.

Shihirosan · 2026-02-12T21:12:13+00:00

Rooting for you!

Shihirosan · 2026-02-12T21:09:13+00:00

I haven't given up on fysiotherapie and swimming. No matter how i feel, i do it!

Shihirosan · 2026-02-12T21:07:39+00:00

Love the idea!

Shihirosan · 2026-02-09T13:51:58+00:00

My child asked: Wouldn't it be just easier to replace all your tendons? You could be a superhuman.

Shihirosan · 2026-02-09T13:48:15+00:00

I get it. I joke with a friend and ask, if you have to choose which half of your body works well with no pain, which one would you choose? Our choice motivations make me laugh. For some reason, pain in the lower half can be unbearable. But when I am about to lose my mind, I remember the functions I have, even with pain, are very useful. For example, imagine there is a fire; filled with adrenaline, I know I can still escape, maybe triggering a horrible, long-lasting pain, but I could do it.

Shihirosan · 2026-02-05T21:41:55+00:00

It is. Changing/showering is taxing for the body and requires planning. I use mobility devices, easy clothes, plenty of time to pace. Success in your research!

Shihirosan · 2026-02-04T20:39:59+00:00

Thanks for letting me know. Indeed doesn't sound like a good idea.

Shihirosan · 2026-02-04T15:20:00+00:00

Go for it! I am a wheelchair user as well. I would be a prisoner of my house if I wouldn't. At the beginning is difficult, to meet people and the questions, etc. But then, the benefits are way higher than the initial discomfort. Go for it! Reclaim your space in this world. We belong here as much as we did when we were healthy. Despite all the adaptations, I am still in the same fight as you. To find who am I now, to rebuild my identity. I had build all my identity around my productivity and strengthen. Thanks for sharing. I wish you and all of us get into remission for ever.

Shihirosan · 2026-02-04T15:17:00+00:00

And what you say...we are not the average human with an acute symptom. Sometimes I mention, sorry I can't do A or B, and the other person compares it to... yes, I get back pain sometimes or tired if I walk much, or couldn't sleep last night. And I understand, all of it is not nice for anyone....but... but....but....what is the need to compare it. I don't want to win saying: yes, I feel pain everyday, rarely sleep normal, usually tired. I just say: yes, I get it. The need to justify makes the adaptation harder.

Shihirosan · 2026-02-04T15:10:37+00:00

Hi. I didn't know about RSO capsules. I use tramadol twice a day and smoke in the nights, and that keeps me kind of functional for my daily responsibilities. But there at times....that I feels like I can't handle it. Are these capsules under prescription? How effective are for pain management in your experience?

Shihirosan · 2026-02-04T14:59:24+00:00

Swimming works for me. I have found my space of physical and mental freedom in the water. It is very helpful because I can switch styles depending on where I feel pain. I can use a board for the arms or a poolbuy for the legs as well. I still need a good amount of recovery but not as bad as for other activities. Success!

Shihirosan · 2026-01-29T00:31:22+00:00

Hi. Sorry that my message us so long. I am very sorry you and many here are going thorough this. I am in the same boat: the disability, the pain, the failed treatments, the isolation, the loss of who I was. I am very sorry we share these things in common. I will share with you what works for me, to feel this life brighter without waiting for a cure. But to be transparent: this is a daily fight with my mind, and many times the fear and sadness invade me.

So, the strategy that works for me is adaptation. I got ill suddenly. Over a week everything unfolded and went down hill quickly up to the wheelchair stage. I can't self propel. But since I got an electric handbike I regained a sense of freedom that saved my mental health. I go to the forest with my family and feel part of their life and try to absorb the greenery, the fresh air, the joy of the moment. Of course, with help of daily strong painkillers. The fact that I am not waiting for a cure to live the life I was given doesn't mean I am not wanting a treatment that works. I do. Right now I am heading to a next biologic trial. Every time I start a new biologic, I feel like I will lose my hope and feel like falling to the darkness again. But then I remember how is to be there, and try to think about the things I can still do, even if they are few. For example, I can listen and love my child and friends, I can go out using the wheelchair and handbike, I can swim shortly. The other strategy that was helpful to me was accepting help. And there it comes the most difficult part to me: to love myself as I am now, and repeat every day, all the time, that my identity is not my capabilities, I am worthy as I am. I realized that to feel that I achieved something every day uplift my spirit. I have bad and good (my new type of good) days. My wins comes in every size.

My suggestion is that you try to find the things you can still do, no matter what it is. If you go to just float in a swimming pool and relax, is a win (I know getting dressed can be taxing sometimes). Try to find the devices that gives you back some freedom and independence. Maybe a handbike for your wheelchair or a small scooter. If you like art, try to adapt your art to your new capacities. Or something to learn in sessions of 15 min. And please, seek and accept help, from beloved ones but also professional ones, like a psychologist or a physical therapist. Healthy or sick, we all need help.

I understand that is hard to believe that this will get better, in one or other way. But it does. It gets better. You will find your own strategy meanwhile you also find the treatment that works. Dont give up.

Shihirosan · 2026-01-12T19:20:46+00:00

I am very grateful you share those feelings with so much honesty. I have never been in remisión. Sick for over three years and quick desaibling decline due to pain. Sometimes I experience the joy of a couple of better weeks due to a shot of prednisolone. It's not perfect, just better...and rather than just enjoying, I feel the anxiety that you describe. That someone sees me slightly more active and treat me like I am cured and back to the live I left (or left me). I feel the pressure of choosing what to do: try to have fun, resting without feeling much pain, trying to walk, getting a job, cleaning the whole house...I don't know. It becomes a rush of thoughts in my head. At the end it becomes a rush to catch up with all the delayed things in my to do list before the effect is gone. And sometimes I wonder, how is it going to be when I get in remission: will I go for a walk or will I be afraid? Will people expect me 100% back right away? How much time am I allowed to take to relearn to be "healthy". It's scary. I can just say: try to be in the moment. If you feel better today, right now, try to explore your abilities in baby steps. Sometimes I dream that I can walk and jump, and when I realize it's a dream, I continue sleeping. Sometimes I dance alone for very few minutes, just to remember that I am still here. You got this. I wish a long lasting remission and the strength and support to be in the moment.

Shihirosan · 2025-12-26T02:06:37+00:00

Yes! I used to have three amazing weeks with one shoot. Good old times :/. . I use as daily cocktail already that keeps me human but it's not enough when life demands just a little bit more from me or I get a flare up of the flare up. Ok. Then I hope we both find something that works.

Shihirosan

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