This is a fundraising account. Proceeds from posts and curation will got to charities supporting research, education and outreach for people with chronic illnesses.
Points with a purpose refers to the fact that I will use these giveaways to raise awareness for the new community on Hive I created supporting people with chronic illnesses
Search communities for "spoonies unite" or follow this link please consider joining the community. You do not need to have a chronic illness (allies welcome) and posts do not need to be illness related. This account will be upvoting posts in this community at random.
The giveaway
100 ecency points will be sent to the winner randomly chosen using Hive random comment picker .
I intend to increase the giveaway amount if these giveaways gain popularity :)
To enter:
leave a comment. Any comment will do-except of course bots hate speech etc. One entry per account
Upvotes, follow, re-blogs are appreciated but not required. Re blogs especially help this account gain reach.
The deadline to enter is 7 days after this post once payout has been completed.Winner will be notified via a reply to their comment or in an upcoming post. Prize will be delivered shortly after the drawing.
Good luck and thank to all who are participating.
You got my support bro(ette).
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@henruc
How are you feeling today? I hope better than yesterday pain wise.
This morning I woke up at four AM with my left foot pounding like a sledge hammer had hit it... Good old COVID vaccine inflammation is back. The gift that just keeps on giving... I wish I could return it to the sender...
I hope today you can manage for time upright!
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eww inflammation is so awful. Sorry you have to deal with it.
Unfortunately for me the pain spike happens every fall/winter. My baseline goes from a 5-6 on the pain scale on a average no PEM day to 7-8+. I literally wake up screaming some nights with the spasms. Yet every medical professional believes this is the quality of life I deserve and offer no viable solutions (yes I tried Lyrica, don't get me started on that bullshit) I am certain my untreated pain is making my conditions worse. No one cares. "Do no harm" is absolute bullshit.
I mean I only have neuropathy , SFN, sed rate average at 40+ (and likely myopathy but haven't had a biopsy yet. No reason to-they won't treat the pain regardless). Clearly I'm just "pill seeking" (sarcasm)
/rant
Lyrica isn't the best of medications for everyone, that's for sure. With your pain you should have something to at least put a dent in it, as much as I personally don't like opioids for me personally.. they do have times they should be used. I'm sure they've tried to dump you in with a pain specialist? (but they are all too hesitant to treat actual pain thanks to the DEA...)
There has to be something causing all your inflammation, and I'm pretty sure it's probably the root of your whole problem. Are they going to do a muscle biopsy? You can't live at pain levels of 7-8, that's just pure torture. You really need to get into a center where they will try to really sort out what is going on. It's just too bad you don't travel well. Are you still waiting to hear back from Brigham's and Women's Hospital?
Pain management here is a complete joke. It is also inaccessible to someone like me who is 90% bedbound. Long wait time. Monthly in person visits . Oh and they only want to do spinal /foot injections on me anyway. Apparently being allergic to NSAIDS is some sort of red flag. Odd because I am allergic to so much shit I can't even name all my allergies. I have even asked to try NSAIDS with an epi pen and that request is always refused (makes perfect sense and I do not blame them for that).
I know you are a fan of Mayo but I know some folks with POTS/ ME from support groups and none of them have anything positive to say about Mayo who still instruct graded exercise and CBT (seriously the PACE study has been debunked and there is so much evidence of the harm of exercise or any exertion with people with PEM). There are really very few clinics nationwide who will actually treat patients with ME/POTS etc.
I wonder if they recommend gluten to their celiac patients too. That makes as much sense as GET for ME/ Long covid
The Utah place really is the place I should go but am not well enough to travel. Will follow up with Brigham on Monday. There also is a clinic in one of the Carolinas that specializes in ME and related diseases.
I haven't had a muscle biopsy because it really doesn't matter. I wont get treated. I asked what the treatment plan was if it came back positive and got no real response. This is not just me either. I do not know a single fibro or ME / long covid patient that is getting proper treatment including pain treatment.
I know plenty of others with different chronic illnesses like Lupus or MS diabetes etc and these patients get their pain treated (though under treated in most cases at least they get something)
Yes no one should have to live in this much pain yet there are millions of us worldwide suffering like this-most of us suffer for decades . My story is not unique, it is the norm.
It's really too bad travelling is so hard on you. I'm hoping soon you might be able to spend more time siting up! You are much more an expert on POTS/ME centers that I am, I have my fingers crossed for you. If you could make it to Utah I think it might be great!
I agree with you on the muscle biopsy. They will likely find nothing, or if they find something then what? That has to be so frustrating for you.
How are feeling today? Today my body is cooperating so I'm actually getting some stuff done for once.
I'm doing ok ish today. I found a cannabis strain that is helping more than usual. Last night my husband was up in the middle of the night and gave me a baclofen. This helped me be able to get out of bed in the morning with less pain. That's a huge plus. I may set an alarm and take this a couple of hours before I get up in the morning.
I also was standing for 10-15 minutes straight today and didn't hit over 100 bpm. I had to take a 3 hour nap after but maybe that's progress.
Despite the pain spike I am consistently getting more upright time. It's a few minutes right now but it's something.
Yes the whole aspect of these illnesses I have is extremely frustrating. I am my own doctor right now but I seem to be making some progress.
Fun fact: There are about a dozen known auto immune anti bodies in POTS patients (not everyone of course but they are finding all kinds of autoimmunity markers) There's lot of odd auto immunity anti bodies in ME patients too (including auto immune anti bodies in acetyl choline receptors) SFN has been found in about 50% of ME and 50-80% in POTS patients. Similar stats for fibro patients as well.This could explain the autonomic dysfunction, or at least part of it. Lots of potsies also complain of widespread often times excruciating pain, especially in a flare/after a syncope event.
Unfortunately, there is basically no funding for these diseases and most medical professionals dismiss patients despite decades of research proving real biomedical causes for many of the symptoms.
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