Congratulations on finally getting a diagnosis
this post was submitted on 22 Jun 2023
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It was such a relief to know it was all "real." I must have been one of the happiest people to be told they had arthritis
Sorry if this is a lot, it's late and the wild temperature changes over the past two weeks have been difficult so this has been on my mind. I talk about the type of pains I have and an ER visit. I also have a difficult relationship with commas, so if that's your thing I'm sorry for that too.
C4, T4, L4, and major joints here. Degenerative since probably my early 20s, my knees make actual creaking sounds. Over the years I've developed a lot of referred pain in my shoulders, chest, and right leg. I've had to do a lot of my own research because I pass all the physical tests and therapies. I've got it pretty well figured out now thanks to a few relatively recent research papers coining the medical terminology for future research (giving a name to what I'm experiencing). I started doing home traction (with a foam head block). That's the only thing that will relieve the pain for more than a few minutes. Other than that meds that reduce nerve impulses keep me functional.
A particularly bad event felt like radiating pain down my left arm, acid reflux, shortness of breath, stabbing pain trying to breath, etc. Went to urgent care then the ER and all the monitoring came up fine, if slightly elevated. Eventually gave me a nitro as a "kitchen sink" last resort and when I bottomed out they stopped trying to figure it out because it wasn't my heart. They gave me morphine which barely scratched the surface. I just laid there for a couple hours until the pain went away on its own (nearly 10 hours), then they released me.
A couple interesting things. I wasn't diagnosed with anything for almost a decade, but I had near-constant hot flashes where I felt feverish and couldn't tolerate anything over 24°C, but my actual temperature never changed. At this stage I'm fairly confident that that was related to inflammation from environmental things. Also COVID (and the vaccine) causes intense pain in my joints for up to 2 weeks. The first time it happened I couldn't will myself to move for a couple hours. Like a non-rheumatoid flare-up, which isn't even a thing as far as I can find.
That sounds terrible. I'm glad you have found something that works better for you
That's crazy :(. Have they thought about trying ablations? I've had great success with them.
That's great news, I think that's going to be my next step. It'll be interesting to see if that's the root of the pain. But at the very least it might make the strengthening exercises easier, thank you.
Ablations are definitely not a cure all, but they help break the pain cycle. Before I had my ablations, my pain would persist even when resting, eg lying down - now my muscles are actually able to catch a break.
If you're in the US, you'll probably undergo trial shots first, where they inject you with lidocaine or some other painkiller. You'll be able to tell right away if it helps. I hope you have the opportunity to give that a try!
I was supposed to have an appointment today with a rheumatologist... And i had to reschedule because I have cold like symptoms...it got rescheduled ... And the visit will be in half a year. So I still have no idea. Congratulations on your diagnosis.
Definitely look for other doctors! I went to a rheumatologist and they ran blood tests, found nothing, and said I had fibromyalgia. I was not amused. There are actual doctors who study pain, see if you can find one!
Yeah I will probably try. I scheduled a visit with my general doctor to see if he can refer me to some other specialists. It's just all so tiring.
Tiring is a great word for it. Fighting for people to listen takes so much emotional capital, it's so sad that it has to be that way. But once you find a good specialist, it will all be worth it!