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Physical Therapy is best. Some folks take meds that are typically so overloaded with side affects that are worse than the neck pain. Some people get neck surgery, but most, if not all, still have… read more
I love to hear the successes, even what some people think are too small for anyone to be interested. They are ALL inspirational to me. No one on this and other forums about lifelong suffering has anything easy about their life. Every day is a triumph over death. Why not share more triumph? Venting is good, but probably better and more appropriately done with a paid therapist trained at handling it. Lashing out at strangers for sharing a win over chronic disease perpetuates the misery. I don't… read more
I like to remain as positive as I can. And find something to be grateful and thankful for each day.
They are withholding my Humira script because I had a basil cell cancer spot on my ear removed last May 2023. I started it March 2023. It was biopsied, cut out, and healed perfectly. I've been without and the process looks like they need the derm doc to call them and let them know I don't have cancer. I had a bad rep who told me to get the information from them and call back with it. Then I was told they need the doctor to call. I understand but 2 hours on the phone of misinformation and… read more
I would be willing to take any test I would be willing to go with go through anything they want to meet you everything from hair skin I have blisters on my one foot from not the other I can't walk my hair has changed I'm just totally miserable I'm not left the house in 3 months doctor acts like oh you just have this and it's not a big deal I had an MRI done they said the constipation passed the colon I can't even go to the bathroom regularly my eyesight's changed I'm not a person that has ever… read more
Eileen Armstrong: I keep reading your story, and it sounds so much like mine. I'm sorry you are having such a hard time, but I can relate so well with most of what you said. I'm so tired of being… read more
How do you describe your fatigue? Tiredness? No energy? I feel like I need a new and improved battery. And I feel like nobody understands the debilitating level of fatigue.
I nap and try to keep daily tasks down to a minimum.
@A MySpondylitisTeam Member. I've gotten used to it largely. However, I do plan to proceed with a stem cell transplant to take the edge off and buy me time until nanosurgery comes online. I was… read more
For example - how do you manage dentist appointments where you can't bend your neck back to rest your head, and tests like CT scans where you not only can't lie flat but you curve up so much you touch the sides or top but insurance will not approve for open scan?
My husband showed me how advanced his is the other day. he bought an over the counter neck brace. He has to put at least 3 inches of additional bracing underneath it to let his neck touch the rest… read more
Guess this is very individualized. But wanted to share this link as they make videos of actual surgeries on cadavers and can watch on YouTube. I get their emails so I can keep up with the latest technologies and best surgeons in the nation. Seattlesciencefoundation.org. They cover many surgeries, treatments and not just spine. Some surgeries are rather graphic and barbaric looking so spoiler alert. Especially rods and cages, screws and such.
No one mentioned stem cell therapy in lieu of surgery. That is now an option covered by most insurers and has a higher pain relief success rate. Its not permanent, and you do need to have a healthy… read more
I was part of a monthly zoom group for aq while. It seemed that everytime I need to get on something else cropped up. I would mqake the effort to go if the chance were provided.
My attendance dwindled because I felt the new facilitator was incapable of running the group nd lacked the ability to gain more information.
