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Anyone out there on Guanfacine?
Went to Mayo Clinic to get answers. Internal MD I saw said I have long term Covid. I had a mild case in Nov '21, but a few weeks later the nightmare began. With each and every passing month, new terrible symptoms appear. As of today, I am in such agonizing pain throughout my entire body. It's a combo of stabbing-like pain and burning pain. Every morning I awaken to trembling in my chest and then the pain kicks in. I can only sleep (if at all for 3-4 hrs. Tried everything.
My immune system is attacking itself. I even developed a chalazion on lower eyelid, formed and abscess, 2 surgeries, came back again, and dry eye issues now. I also have ear pain and buzzing. I never had eye issues or anything prior and was so very healthy, like all of us.
Covid has taken the life I once knew away.
The Doc I saw prescribed Guanfacine. He said, Covid causes inflammation everywhere to include the brain and puts us in "flight or fight mode."
The BIGGEST problem I'm having is I have tried for weeks to get a hold of the Doctor I with a question on the Rx. I sent several messages through Mayo mychart, called again and again (9 times) to please have him call me and he will not and just deserted me.
I was told by his assistants he's "too busy." I can't believe a human being, especially a Doctor I drove 4.5 hrs to see and spend $$$$ doesn't have the decency to care enough and call me.
I don't know where to turn and can't stop crying in pain and mysery.
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In reading many of the posts and folks that are working with Integrative, Holistic and natural MD's, it appears they are getting better results in treading LT Covid as if you're treating Epstein Barr Virus with L-Lysine, etc.
Makes sense to me since they say folks with LT Covid typically had Epstein Barr Virus, unknowingly and w/o symptoms when they were younger. Apparently, there is testing which can be done to determine if you had the virus and I am going to ask my primary MD to order the tests.
I know back in 1987 I had chronic fatigue syndrome which was not even really known back then and I did a lot of research on my symptoms and connected the Docs in looking for cure on my own. All the Doctors at the time weren't aware of it and said CFS doesn't exist. I found a Doctor in NY (I live in WI) who was treating it intravenously with a cocktail mixture of vitamins, etc. As ill as I was, I few out there alone, got the treatment and it cured it up. I wish I could remember the name of that Doctor! His office was in Manhattan. Doc was brilliant and I bet he's now treating LT Covid
@emo - just send you private message
What has your experience been with LDN as far as your starting and mtc doses, side effects, and how long before you got pain relief (are you taking it for fibro)? I started yesterday for fibro pain at .5mg for 7 days and then increasing by .5mg every week up to 4.5mg. I was already having muscle pain, but it got progressively worse yesterday, lasted all night and today continues with severe muscle pain all over. I decided to skip my LDN today until tomorrow when I can talk to the pharmacist. Thanks.
Hi! I wrote about it in more detail here: https://connect.mayoclinic.org/comment/882778/
I can't say I noticed much in the way of relief from pain with the LDN, but I felt improvement in fatigue immediately. But it's one of those things where it could be gradual and I might not notice and/or I'm doing other things for chronic pain at the same time (mostly physical therapy grounded in retraining the central nervous system and how it processes pain).
I dunno if you've come across this thread before, but it may be helpful because it's about LDN dosing specific for fibromyalgia: https://connect.mayoclinic.org/discussion/ldn-dosing-for-fibromyalgia-and-mecfs/
I tried LDN some months ago. Whenever I got up to 3 mg, much less, the 4.5 mg, I would have a serious headache (one of the issues I was seeking to treat) so I had to stop.
I'm sorry it didn't work out for you. One of the things I liked about LDN is the dose is very customizeable; there are many reports of people who have benefits with less than 4.5 mg, even people who stop at less than a mg, and it can sometimes still be effective. My dad also takes LDN (he has fatigue from an inflammatory arthritis), and his dose ended up being 4.75 mg. When he was taking 5 mg, he was really overactive, bordering on anxious, which led us to scale it back. It's interesting how such a small change can make a difference.
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1 ReactionRegarding LDN, how long did you stay at one dose before going to a higher dose. Did you increase by .25mg each time? Also, any side effects? I started LDN (for fibromyalgia that started 5 days after having Covid) five days ago at .05 but had worse body pain was advised to skip a day and restart at 1/4 of that, or .125. At this low dose, I'm not sure if some increased pain is a side effect or not. Yesterday I had some nausea and flu-like symptoms, which can be side effects that are supposed to subside after a few days on the LDN. I'm hoping it works for me.
Yes, I just ended up increasing by .25 mg each time. I stayed at .25 mg for 2 weeks, then increased to .5 mg, and so on, until I reached 4.5 mg. That was the goal my PCP and I agreed upon.
If I experienced side effects for 2-3 days, I dropped back to the previous dose for another 2 weeks, or like you I suppose I would also have gone down to 1/8 of a milligram. Then, I'd moved forward again.
The only thing I did to titrate faster was that later in the game, I waited only 7 days before increasing the dose. I don't really remember when I started doing that, though. It might have been after I got to 2 mg or so. I still followed the same template; if I had side effects that lasted for more than 2 days, I dropped back to the previous dose. But that is my usual model for how to incorporate new interventions for my body though. It's how we manage my central sensitivity syndrome.
The only side effects I had were feeling too energized/alert and difficulty sleeping, which is are known sides effects. I believe GI symptoms and flu-like symptoms may also be known side effects. I didn't have increased pain.
I hope it helps you too.
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1 ReactionWhy are you taking LDN? (sorry if you mentioned it earlier). What improvements have you seen? Any decrease in pain. Also, are you taking any other meds for your condition besides LDN? Thanks.
I wrote about it to you here: https://connect.mayoclinic.org/comment/889113/
The most noticeable improvement was with improved energy. I have central sensitization, POTS, HSD, small fiber neuropathy, seronegative spondyloarthropathy (an inflammatory arthritis), and long COVID with fatigue, chronic pain, and GI symptoms.
I do not take any other medication except a biologic for the spondyloarthropathy, because I don't tolerate medication well. The foundation of my chronic pain management is physical therapy and a comprehensive/integrative pain management approach (focus on function and improving the way the central nervous system/brain interprets pain signals).