What is my body doing to me?

I was just watching TV when my left hand really started to ache. My right hand was massaging my left hand and WOW! I found a spot that was super tender. Then I started thinking “ did I always have that bump on that bone? “ No. I felt my right hand and it doesn’t have a bump that’s painful. What is going on with my body? And when will a doctor take interest in my symptoms and help me ? I’m still in disbelief that my rheumatologist told me there was nothing else she could do for me. What? It’s dismissive. It’s like she is saying to me “ see you in 6 months but I won’t even try to help you.” If what I’m experiencing is 100% fibromyalgia, that’s ok with me. Do people with fibromyalgia walk like they are slightly drunk and lose their balance? Do they have random lumps on their leg muscles that should not be there? Does EVERY joint in their body throb in pain? Does their vision get worse? Do their eyeballs ache periodically but that lasts sometimes 10 hours? Do people with only fibromyalgia go from walking independently 1 year ago to using a walker or cane? I get tears in my eyes because I feel like I’m fading away and I don’t know who to turn to? I want someone to pay attention to me and help me before it’s to late. To late means that whatever is going on with me, has progressed and can’t be reversed. But if it was “ caught” sooner medication would have prevented further damage. I don’t have anyone who can help me with this medical journey, such as friends or family. It’s not their fault. They have busy lives and my friends do their best to help me. I don’t want to come across like I’m having a pity party. I want a party without the pity that helps me find an answer. I know a lot of you know what I’m talking about. What has helped you get concrete answers?

OK, so here’s my contribution to the party without a morsel of pity :wink: -
Going on with the ‘Neurontin’/gabapentin sfx started on the answer to your post on my blog, where I’ve already mentioned ataxia as the first & foremost, which includes abnormal gait: It can also cause eye problems (esp. rolling), joint stiffness & pain and swellings. Taking it since end of 2018 is quite some time, are you still at 3x600mg? Are you still on Cymbalta/duloxetine and amitriptyline and ritalin? Like with gabapentin: duloxetine and amitriptyline can give you blurred vision, weight gain and headaches, insomnia, restlessness, gait disturbance/unsteady walk and a whole load more. Maybe your sfx have been building up rather than you getting used to it. (Same for me with amitriptyline last year…) You’ve said a few times the meds aren’t working - is that still the case? Do you mean not enough, or why are you still taking them? You asked me about med detox on my blog: Have you tried that yourself? BTW the serotonin syndrome I may have had slightly for praps a few days is 1 of the sfx of both gabapentin and duloxetine…
Another possibility wd be for you to change to pregabalin instead of gabapentin, the sfx of which seem to be a bit less which is why it is recommended much more often than gabapentin now AFAIK.
Tapering gabapentin off too quickly can cause withdrawal symptoms starting after about 2 days and going on for up to 2 weeks, depending, but slowly shdnt be much of a problem.

That said - If these are the symptoms you think are least likely to be FM: I’ve often read of all of the symptoms you’ve mentioned above as fibromyalgia: Gait, balance, lumps, joints, vision… The eyeball ache sounds more like the meds to me (also from my experience of meds & supps).

But as you know I always pinpoint each symptom separately, and these are all (incl. vision!) things I('d) work on with a good gentle physiotherapist, like osteopath or acupressurist or similar, with or better without any meds…

Very interesting JayCS. I’m taking Gabapentin 300mg three times a day. I don’t take duloxitine, Ritalin or amytriptaline anymore. I have had serotonin syndrome off and on over the years, but very mild. I’m also quite med sensitive now. The gait disturbance started about 6 months ago. With the exception of starting LD Naltrexone about 3 months ago, my medications haven’t changed. I think the LD Naltrexone has helped some with the pain. I don’t wake up as often screaming in pain. I was doing that, maybe, 3 times a week? The things that seem to continue to get worse is my strength, fatigue, joint pain, headaches, eyeball pain and definitely my balance and mobility. Oh, and then seeing more lumps and bumps. In all your research, have you read anything about fibromyalgia symptoms getting worse leading to a person needing full time care? And ending up having to use a wheelchair? I have thought about doing a med detox. Since I’m moving to a new State, I’ll wait until I find a new doctor to help me with that process. Hey JayCS, you are super smart. Would you mind doing some research on how to do a partial brain transplant? I would like just a small part of your brain. I would be willing to fly to Germany for the surgery! :joy::rofl: Maybe it would help increase my tech knowledge, creativity and make me S M A R T E R- ISH ! :rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl:

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Wow, you’ve found someone and are trying something as experimental als LDN, & it’s taking the edge off the pain?! Great!
Cdnt you use the time before you move to wean off gabapentin (with doc) inside of 2 weeks and if that makes it worse to go back on it quickly? Maybe that’ll be a lot better already and if not you know that gabapentin is helping at the moment, and can do a detox after (I assume that means you are taking more than the 2?). If you even got a doc to give you LDN, I’d be surprised if they weren’t open to helping you stop gabapentin.
Or have your moving plans got more tangible? Last I read the original ones dissolved and it’d be months to find something new…
Just fearing that you’re putting something simple off too long instead of just trying it? Who knows how long it’ll take to find and make it to a suitable doc there… And if it doesn’t work too well here you could use the new doc there to discuss that experience and get a 2nd opinion. Yeah, I know, you don’t ‘like’ doc hopping, but in this case you aren’t even hopping.

Done the research about JCSPBT and everyone agrees while the operation is no problem & they’d all be pleased if I had a little less head you cdnt live with all the sfx of the end product. For a start wd you prefer the hyper firework part or the speech part with the focal seizures or a bit of both? :wink: (Got no problem living with both, but I don’t think anyone else cd, tough enough for my wife already…) And then you can’t imagine how strange you’d be :crazy_face: and how people’d look…I’ve needed so much life to try to get used to it… ;

Well JayCS, because I know you are so smart, I’m sure you could figure out a way to do the partial brain transplant by selecting tissue that is free of seizures and only contains the SMARTS that I need. :rofl::brain::brain::brain::brain::brain::brain::brain::brain::brain: :rofl::joy::sweat_smile::rofl::joy::sweat_smile::rofl::joy::sweat_smile: My more updated status on moving, is that on August 30th, people are coming to load the truck that I rented. Then on August 31st, my cousin and her husband will take turn driving the truck to Minnesota. It will take 7 hours but that doesn’t include stopping for food/ fuel etc. Then on September 1st, several of my cousins will help unload the truck at my new apartment. I am really excited. I used to live in Minnesota but not the area I will be moving to. In my apartment, there is a large, indoor whirlpool that I can use anytime. That will help med greatly when I have a big flare up. Also, I don’t know if I mentioned this or not, but my apartment is handicap accessible. I didn’t ask for that. It just happened to be the only apartment available for September 1st!!! I’m on the 1st floor and have my own patio that faces a beautiful courtyard. I hope my little 7 pound chihuahua is going to be ok. I adopted him 2 years ago this month. I knew he was an older dog but he didn’t have any history about where he came from. He has recently developed a partial collapsing trachea. He takes prednisone and that has helped a lot. He has separation anxiety and small changes really upset him. But he is the most wonderful dog in the world! His name is Max. He is almost 100% deaf. His right back leg is almost flaccid. But he doesn’t know it. And he’s hysterical! I have 2 people from church coming to help me pack on the 26th. And a friend is helping me pack today. My sister is calling . More later.

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Wow, Freedom - so happy for you, the future is open wiiiide! :hugs:

I had another wonderful trip to ER this last Friday. Mmmmmmmm. :face_with_raised_eyebrow: And again, was immediately judged before I could even explain my symptoms. Long story short, I was having an irregular heart rate. They asked if I had a history of anxiety. I said yes. Then I was looked at as a person with mental problems versus cardiac problems. They told me my ECG was fine. I left because I knew they wouldn’t help me. On Sunday, I saw the ECG result, which said. Abnormal ECG, low voltage, possible pulmonary disease. Low voltage has to do with my heart, not with the ECG machine. This may explain why I’m short of breath when doing simple tasks, why my fingers have edema, why my chest feels tight sometimes, I’ve developed a dry cough. I have never smoked. I rarely drink. I had a half glass of wine on Christmas Eve last year. I’m only 53 years old. I move in 2 weeks. I don’t have the energy to pack. That’s all for now. :pensive:

I haven’t had any heart palpitations in a while. Maybe it’s because I laughed really hard that day and it effected my heart. I see my rheumatologist tomorrow via video. It’s weird, I’ve known her for 2 years. But every time I talk to her, I end up feeling really bad about myself. It’s just me. I hate feeling like a number and an inconvenience to her. In a little over a week, I’ll be moving and have to find a new rheumatologist. Fun fun!

Hey Freedom: Sounds like you don’t need to take the palpitations seriously, good! I did a whole row of bp checks for a few days so I understand how mine works. While doing it I realized that breathing very deeply decreases bp, increases pulse and often leads to an irregular beat.
I can also influence my heartbeat with relaxation exercises, which I’m getting even better at doing on the go at the moment, using an effective mental image. Is that something to practice?
I don’t think it’s just you. As you know I’ve seen 45+ docs in the last 2 years. (Now only GP for acupressure prescription, cardio for checks, sleep psychiatrist to discuss supps and psychotherapist for confirmation/strengthening.) The rheum. who diagnosed me (the other 5 were fairly OK) was only topped by the 2 orthopedists in terms of making me not feel taken seriously and silly. Everyone else was golden in comparison, even those who also harmed like the pain docs or were totally unreliable like the first endocrinologist. Glad I don’t need them any more, I wiped all :shit: off my shoes on their doormat leaving.
Of course there are good rheums - I hope you find one or an even better alternative.