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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#31 | |||
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My mom has had this since the beginning of June (thereabouts) and it's going to be 2 weeks soon and it is only like 25% better. 3 doctor's visits later, some anti-viral medication, anti-viral eye gel and some NSAID eye drops because she had a whopper of a conjunctivitis to top it off! It is going to take at least... oh at least 2 more doctor visits. We'll have to see. And of course, the anti-virals is a "round" of 7 days every time, so she needs to go for a check-up and for re-upping the prescription. She did get some Tramadol the last time round, because she was taking paracetamol and crawling over the floor (literally) every time she needed to muster up the strength to get up in the mornings. It's that bad. Every morning she is near tears (and that is super hard to see from a daughter's POV). At least now she can open the left eye for about 20-25%. And the redness has mostly subsided (it was bright red, inside and outer lid). Funny though. Shot was in her left arm. She has shingles in the left eye.
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All the best, Marleen ===================== Work related (car) accident September 21, 1995, consequences: - chondromalacia patellae both knees - RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008 |
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#32 | |||
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I have been fully vaccinated, no ill effects. Just wanted to come on here and mention that. My CRPS did not flare up, nothing of the sort. Not even sick, nothing but a tiny bit of a sore spot on the arm, which... I could deal with. I had "offered" my "good" arm, meaning the less bad one.
My mom came down with shingles of the eye 3 weeks after Pfizer shot N°1. On the dot 3 weeks later. Left arm injected. Left eye affected. It is strange. Anyway, she has had that since June 1, and it's still going on and being treated right now, so for sure until September 1, if not October 1 because she has doctor's appointments mid to late September for this still. <sigh> Yeah, rollercoaster. I mean, who would think that? Her 2nd shot is needing to be postponed until 2 weeks after it clears up. They keep calling and each time we have to tell them, "severe case, still not healed, please keep her listed". My dad had refused his first shots, no wonder, it was AstraZeneca, which was approved in the EU, but not in the US. He did *not* want that, with a vengeance. I would have refused that also. Both me & mom got Pfizer, BTW. I just got given the all clear to re-activate him yesterday, so he could get the invites again. Hoping this time it will be Pfizer or Moderna, maybe, maybe even J&J, because they no longer do AZ due to concerns (finally darn it). They will never make it compulsory in this country. Fear of lawsuits. There are people who have died from the vaccines, but apparently they are quantities you can just "ignore" because oh "C" is sooo much worse. Kind of twisted logic, in my book. Let's just keep it real. Those are deaths just as well that perhaps could have been avoided with the right vaccine, or a different one. Anyway. I am certainly not anti-vaccine, but I was still cautious about the whole thing and definitely weighed the pros & contras.
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All the best, Marleen ===================== Work related (car) accident September 21, 1995, consequences: - chondromalacia patellae both knees - RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008 |
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"Thanks for this!" says: | Lara (08-18-2021) |
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#33 | |||
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Legendary
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Hi Marleen,
I don't have RSD but have been following the thread and your recent messages about vaccines. I'm glad yours went well but am so sorry to hear about your mother's ongoing problems. That must be really terrible for her to deal with, and ouch, in the eye for so long. Just awful. I wrote a couple of messages elsewhere recently. I was faced with the usual blind hyperbole and lack of empathy and I ended up deleting them. Despite what some people (including governments) are telling us, one size does not fit all and one vaccine is not suitable for everyone. I had no choice in my area of Australia unfortunately but to get the AstraZeneca and it made me very ill. I'm on Immunotherapy (Pembrolizumab) for metastatic melanoma. It is an immune checkpoint inhibitor. It is not like Chemotherapy where the immune system can be suppressed. Immune checkpoints are part of the natural immune response that keeps your immune system from being too aggressive. My body is in a kind of "overdrive" all the time so having this particular vaccine seems to have tipped me over into more dangerous territory. I didn't want to get the AstraZeneca but it was all that was available in my area. I'm still recovering and have had to have my usual treatment postponed until I am well again. All very troubling. I don't know what will happen when I'm due for the 2nd one. I can't go through this again. I wish I'd been able to have a choice. After all the research that I did, I asked to have an mRNA vaccine rather than the one that I got but because I spend so much of my time back and forth to pathology and imaging and oncology wards etc., I had to take what was available unfortunately. I wish you well and hope that your mother gets better really fast. Last edited by Lara; 08-18-2021 at 05:50 PM. |
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#34 | |||
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My uncle got AZ and he was in bed for a week! No, that is why my dad promptly refused.
They gave people a second chance here to re-register, so I did that for my dad, online, and by that time they had ditched the AZ completely, so it was either Moderna or Pfizer he was gonna get. He now has to go start of next week for his first shot and end of September for his second shot. Mom ended up going for the second shot. Her eye issues are still not over; still taking gabapentin for the pain. And she is on 700mg 3x a day, while I am on 900mg 3x a day (granted I have additional pain patches and sublingual tablets)... but still, you know. The pain is severe for her! This shingles thing started June 1, and is still ongoing. GP declared the virus "dead" but she still has to visit with the ophthalmologist half-way through September. She just said to me, "there went my summer". And yeah, true! My uncle got the 2nd shot of AZ and did not react as badly as the first time, at all. Thank you for the well wishes; sorry I got back to you this late!
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All the best, Marleen ===================== Work related (car) accident September 21, 1995, consequences: - chondromalacia patellae both knees - RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008 |
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"Thanks for this!" says: | Lara (09-05-2021) |
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#35 | ||
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Grand Magnate
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Had the first vaccine - Moderna - on about August 3rd and 28 days later on September 1st I had the second vaccine of Moderna. Both were fine.
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Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
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#36 | |||
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Just wanted to keep you guys posted.
Me as well as my mom & dad have now all had our 2nd shots. All we all had was a sore arm, which is great news, especially for me. With dad's first shot, it sort of radiated to his neck, but that went away quite soon. There is talk of a booster / 3rd shot for those immuno-suppressed (this time I am not on a short list of chronic patients, they really narrowed it down further now, which... why am I not on there), and also for those 65+ so that includes my parents. My dad just got a leaflet saying it will be 4 months after the last Pfizer shot, so that puts his booster March 2022. I mean... come on! I generally have no issue at all with the Pfizer shots. Astra Zeneca? Different story and I still wonder why that got approved by the EU.
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All the best, Marleen ===================== Work related (car) accident September 21, 1995, consequences: - chondromalacia patellae both knees - RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008 |
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"Thanks for this!" says: | Lara (03-15-2022) |
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#37 | |||
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I do not have RSD (that I know of). I do have a lot of nerve pain though. I once injured the nerve in my right arm by having a blood pressure cuff get too tight. 5 years later it still hurts, and I rarely have anything medical done on my right arm. Blood draws and innoculations always get done on the left, as well as blood pressure.
I had 3 Pfizer vaccines at the recommended intervals, starting March 2021 and ending 3 weeks ago. The first 2 shots caused arm pain that never actually went away. I was treated with Toradol shots both times. They helped in the short term. When I got my booster 3 weeks ago I got the same arm pain and more. Now I have chest pain too as well as mild nausea and muscle weakness. We tried the toradol again, twice. Only short term relief. So far the diagnosis is pleurisy. I am too weak to even go grocery shopping. I was off work for a solid week and I have been to the ER once. I have a followup with a cardiologist next week. Pleurisy was not reported as an adverse reaction by the CDC so I reported it via VAERS. Nobody has followed up. I am not an anti-vaxxer, but I do have deep moral concerns about the morality of Pfizer and the CDC. I also work for a company that has federal contracts. This means that I am subject to vaccine mandates, whether or not I bill time to a federal project. This is not why I got vaccinated. I did it out of fear of dying from COVID. But after the suffering I have had for the past 3 weeks, I am pretty sure I would never try mRNA vaccine again. |
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#38 | ||
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Oh boy, a member on another group is a sub contractor for a huge military company and even thou she works from home, they are push push her to get the jabs and she will not, and so she involved with attorneys and lawsuits, this is in New Mexico. I'ts all so wrong the mandates. I've posted that I hear from people using NAC to work to detox their bodies of the jabs. So many are going thru so much damage.
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#39 | |||
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I just got my booster shot last Monday the 3rd, with Moderna, both my shots were Pfizer.
And I have to say, I feel fine. Except for a sore arm and this time one killer of a headache (no migraine, so thank goodness), I really have nothing to complain about. How are you guys all faring with the shots and your RSD?
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All the best, Marleen ===================== Work related (car) accident September 21, 1995, consequences: - chondromalacia patellae both knees - RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008 |
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#40 | |||
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Senior Member
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Hi from the MS forum--
To answer your question, CRPSbe, I just had my COVID booster shot yesterday. It was Pfizer. The first shot was J&J in June, and so I was overdue for this because they're saying that J&J needed boosting after only 2 months. It's been nearly 24 hours since the shot and I've had only a moderately sore arm. It helps a person's peace of mind to know that we've done what we can. There have now been 7 reported COVID cases in the building I live in, which has 58 units.
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Repeal the law of gravity! MS diagnosed 1980. Type 2 diabetes, osteoarthritis, osteopenia. Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, 12/16/20 - 3/16/24 |
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