MTRJ75 Posted February 11, 2022 Report Share Posted February 11, 2022 Lately, the burning, aching exhaustion has been my worst symptom. Not sure if that's a bad thing or not because the heart palpitation stuff, the crazy adrenaline ups and downs, the stuff that sends you to the ER, has been a bit better. Although, the worse the aching exhaustion is, the worse I get the sweats and flight or fight symptoms with just the movement of a few muscles. It's been so bad the last couple of weeks that I'm having a lot of trouble getting out of bed and it's not subsiding much until very late in the day when it's time to go to bed again. Is this a normal part of POTS or more a different neuropathy type thing? CBD oil has helped with muscle aches in the past and I've been on LDN for about 6 months now, which I thought was helping with some of the inflammatory aches and pains. I've been trying to do some very light exercising lately, but this, of course, makes it much worse. I see the neuro on Thursday (2/17). Any thoughts? (Also still really struggling with allergy - MCAS?? - symptoms despite being on an H1, H2 and mast cell stabilizer for about 6 months too. Wonder if there's a connection there.) Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 12, 2022 Report Share Posted February 12, 2022 I'm sorry you are having all of these symptoms. When I am in a bad POTS flare I have burning and aching feelings across my body. Along with being easily exhausted. No dr has ever really explained this except to say it's part of the POTS syndrome. For me it subsides after weeks to months. I have been diagnosed w low B12 in the past (two flares ago). It may have helped me to take a supplement--not sure. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted February 13, 2022 Author Report Share Posted February 13, 2022 It's not a flare thing for me. It's just something I often overlooked due to worse symptoms, although it is sometimes worse than at others. Wasn't sure if it was a POTS thing or something else though because I couldn't tie it to any blood flow issues, so interesting (but sad) to hear that other POTS sufferers experience this. Thank you. It really hit me how bad this is and how much it's holding me back when I mentioned to a friend I hadn't seen in a few years that I'd been doing better and they suggested meeting for lunch or drinks. I then realized how much farther I still have to go to get to that stage. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 14, 2022 Report Share Posted February 14, 2022 I've had all kinds of tests and imaging over the years and no neurological problem is ever identified. I do find it debilitating especially along with other symptoms, when it flares up. Yes I understand seemingly simple activities can really be impossible. Even when I start feeling better, I know I can't be in highly stimulating environments when I am in a flare--it can make me crash (become even more debilitated). Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 16, 2022 Report Share Posted February 16, 2022 That burning in your muscles is concerning. That happened to me and it was Rheumatoid Arthritis. Maybe you should go see your primary and let them know this is going on. I also have MCAS now and it is not controlled by that list of meds. I'm supposed to get referred back to Vanderbilt soon. I'm hoping they can figure out a solution. My RA is not well controlled either. My foot joints are so inflamed that walking is excruciating. Maybe your primary will check or recheck your ANA. Good luck. I hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted February 16, 2022 Author Report Share Posted February 16, 2022 I've long suspected all of this is autoimmune, but never thought RA. The burning is more of a sunburn feeling just below the surface. The ache and exhaustion are worse. I don't have any join pain or swelling at all. I'm guessing the MCAS is really contributing to this constant nausea and loss of appetite that go along with always being congested or runny. I don't know what else to suggest though. Please let me know if Vandy figures out a way to properly deal with the MCAS @KiminOrlandobecause I still feel this is the key to functionality again for me. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 16, 2022 Report Share Posted February 16, 2022 Agree seeing a rheumatologist may be a good idea. I saw one and he ordered every test he could think of and nothing came back positive/concerning. But for me these symptoms come and go and have not been progressive. I would be more aggressive if the symptoms are persistent and interfering with function. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted February 16, 2022 Author Report Share Posted February 16, 2022 I've been to two rheumys without any stand out blood work. Including one at a big university. The last one said in no uncertain terms...there's nothing rheumatology can do for you w/o bloodwork. Don't come back. I am planning on looking more into IVIG type treatments, though I don't imagine insurance will improve such a thing. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 17, 2022 Report Share Posted February 17, 2022 6 hours ago, MTRJ75 said: I don't have any join pain or swelling at all. Neither do I. Nothing visible. Nothing red. Nothing swollen. This is why it took forever to get an RA diagnosis. I had sero-negative, non-erosive RA. Although my ANA was positive but the smear indicated Lupus. The official diagnosis is Undifferentiated Connective Tissue Disease or Mixed Connective Tissue Disease. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted February 17, 2022 Author Report Share Posted February 17, 2022 That's so strange. Yes, UCTD or MCTD are phrases I've heard doctors mention before when dealing w/ me. I guess it's another way of saying seronegative autoimmune. Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 17, 2022 Report Share Posted February 17, 2022 5 hours ago, MTRJ75 said: I've been to two rheumys without any stand out blood work. Including one at a big university. The last one said in no uncertain terms...there's nothing rheumatology can do for you w/o bloodwork. Don't come back. so what blood work were they asking for? i know the big university out here won't even look at you for MCAS until you meet the requirements. baseline blood work and then while in a flare is one of them. they also warn to not start self medicating with antihistamines as it can cause more issues than it solves. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted February 17, 2022 Author Report Share Posted February 17, 2022 They (Rutgers) did their own bloodwork. Very comprehensive, for autoimmune. I don't think there are many doctors who know how to effectively treat or even diagnose MCAS yet. I can't wait to hear about people who find stuff that works. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted February 23, 2022 Author Report Share Posted February 23, 2022 I'm extremely frustrated. Even when I feel like I can get up and do a few things, my muscles SCREAM at me and absolutely light up my fight or flight reaction as soon as I sit back down. Why is my vision blurring after minimal physical activity? It's like my body is going into shock from any muscle usage. Is this the sign of some kind of muscle or nerve damage? I mean I can get up and do a few pushups if I need to, but the aftermath is agony once I sit down again. I'm still sweating an hour later. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 26, 2022 Report Share Posted February 26, 2022 Have you ever heard of something called Small Fiber Neuropathy? Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted February 26, 2022 Author Report Share Posted February 26, 2022 Yes, although my neuro has never mentioned it as a possibility. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted March 4, 2022 Author Report Share Posted March 4, 2022 Neuro believes that most of this is coming from the brain (fibro/CFS) rather than damaged or destroyed nerves/muscles. The problem is that even if this is an auto-immune process, he can't prescribe an autoimmune solution (IVIG, etc...) as a neurologist and since I don't show up for any AI bloodwork.... We're kinda stumped here. Again, today, a small amount of activity (felt ok - or as okay as I get - before and during it), changing bedsheets and vacuuming a small room, led to every autonomic process in my body (sweating, nausea, digestive track, heartbeat, blurred vision) lighting up as soon, but not before, I sat down again. My body simply can't downshift for some reason. Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 5, 2022 Report Share Posted March 5, 2022 12 hours ago, MTRJ75 said: Again, today, a small amount of activity (felt ok - or as okay as I get - before and during it), changing bedsheets and vacuuming a small room, led to every autonomic process in my body (sweating, nausea, digestive track, heartbeat, blurred vision) lighting up as soon, but not before, I sat down again. I feel your pain with this. Back in 2019 when my symptoms started getting really bad i would go thru the same thing. What seemly would be an easy task would just set me off just as you are describing. While i have no idea what the root cause that gave me grief i can tell you once we completely changed out my meds i am more tolerant of with being active. I hope you find some answers. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted March 5, 2022 Author Report Share Posted March 5, 2022 TY. Most of my meds predate these symptoms. Do you remember what type of meds it was for you. Think I was only on Sjogren's med and maybe beta blockers (now very small dose) before this first became a problem way back when. Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 5, 2022 Report Share Posted March 5, 2022 @MTRJ75at the height of the bad symptoms i was on 50mg of metoprolol 25 mg of hydrochlorothiazide, 20 mg of lisinopril and 30 mg of isosorbide. Just to add i would even cramp up piling a nail into a piece of wood. The recent change to Carvedilol has helped i just can't say the rest of my meds have been stellar. Up side i still have had good days i hope i can figure out what works soon. Quote Link to comment Share on other sites More sharing options...
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