sue1234 Posted March 9, 2011 Report Share Posted March 9, 2011 Well, now that you describe the coat hanger pain, I've had that same muscle group issue along with my POTS. For some reason I don't get pain, but those muscles are constantly tense. In fact, they are like that 24/7, and it's just a way of life for me now. I can consciously untense them, but they go right back to being tense. It's kind of like tense is the default setting!I didn't used to have this. It's especially bad when I am upright, like tensing my shoulder-upper body "helps" me hold myself upright. I know that doesn't make sense, but that's how I've described it all along.Sometimes I feel like if I can relax that area via muscle relaxers, maybe I will feel better upright. Like, if I could make myself feel like a ragdoll, maybe my circulation would fare better and more even. Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted March 9, 2011 Report Share Posted March 9, 2011 Sue,It's good that you do not get the pain. I find the higher my blood pressure, the worse the pain. I am sure it is a compensatory mechanism to get blood up to the brain. I completely understand what you are describing. Even when I am supine, it is hard to relax my muscles, and I wake up with a very sore neck and shoulders. I often walk around hunched over in a desperate attempt to relieve the tension. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 9, 2011 Report Share Posted March 9, 2011 LOL, I walk around kind of hunched over too! I find it uncomfortable to stand up straight--don't know why, but it definitely popped up within my POTS life. Quote Link to comment Share on other sites More sharing options...
autumn Posted March 9, 2011 Author Report Share Posted March 9, 2011 The physical therapist called my problem myofascial pain, but there was really no explanation. The rheumatologist said my neck is abnormally straight and there's a very slight curve in my spine, but that's it. I do get really tense in my neck and shoulders, and I occasionally get a weird tingly feeling there, too, along with spasms that can last weeks. Muscle relaxers don't help. I've read that myofascial pain can be yet another symptom of POTS. *shrug*I get a different kind of pressure/pain in the same areas sometimes after I stand and/or when my vision blacks out. The pain is usually debilitating during an arrhythmia episode. I definitely think this aspect is related to blood pressure, as I apparently sometimes lose a pulse during the episodes. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 9, 2011 Report Share Posted March 9, 2011 Hi All-I'm late to this thread, but wanted to add that when my coat hanger pain is at it's worst- I'm usually having hypoglycemic flares??? What's that connection For all of you with even intermittent high BP, read my new thread- possible warning for "seniors." I worry what salt loading may do to us Be careful. Julie Quote Link to comment Share on other sites More sharing options...
issie Posted March 12, 2011 Report Share Posted March 12, 2011 This is interesting subject to me because I'm hyper POTS too with the high bp and high pulse rates. I've heard that - sometimes - the coat hanger pain can be associated with multiple sclorosis. I have this type of pain too. I have to take muscle relxrs and pain meds. But, I also have fibromylgia and ostoarthritis. But, my neck and shoulders get knots in them that can not be massaged out. My husband can rub for hours and it never releases. I have to resort to meds when this happens because it gives me a horrible headache - not to mention the pain of the cramp up and muscle tension. I'll be really, really sore from the eposiode. The doc had wanted to do a spinal tap, but I didn't want to go there - right now. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted March 12, 2011 Report Share Posted March 12, 2011 Just had an ah-ha moment........all of my back pain, starting at my neck and traps, to my mid back (lower lats) and my lower back (lumbar region) really kicks in when I'm standing, muscle relaxers or massage don't seem to work all. Laying down seems to be the only thing to lessen the pain. The pain is always there just much less when I'm laying or reclined. I never connected the increased BP & HR together with the increased neck and back pain. Quote Link to comment Share on other sites More sharing options...
issie Posted March 12, 2011 Report Share Posted March 12, 2011 There was a poll awhile back on this orthostatic hyper or hypotensive, and I was surprised it was 50/50 on the forum. You hear more about and see more research on the hypotensive (or passout) group, but there are plenty of us just like you. When we stand up our BP starts going up, the longer we stand the higher it goes.....along with our HR. One thing to look for also is a narrowing pulse pressure, this is a sign of hypovolemia. In my case once I stand my pulse pressure narrows to 10-15, then my BP rises while my belly fills up. It continues this all the time I'm standing. Good with yours and I hope you feel better...... I have this happen too. Why do you think we lose blood volume and collect fluid in the ab - at the same time. I know this causes a start of the renin/aldosterone process - but why does this happen in the first place? I have EDS and wonder if the laxity of the blood vessels plays a part in this. I have the narrowing pulse - that at that point my blood pressure mointor won't even register - it won't take my pressure. It's a really uncomfortable time period. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted March 12, 2011 Report Share Posted March 12, 2011 Issie my BP monitor does the same thing, when my pulse pressure is too narrow it gives me an error. Quote Link to comment Share on other sites More sharing options...
issie Posted March 12, 2011 Report Share Posted March 12, 2011 Hi TXPOTS...I was just like you. When I first got sick I was working out everyday (except Sundays). Then I started having diarrhea right at the end of my workouts which, of course, disrupted me. Eventually my abdominal pain got so bad that I quit working out and everything went downhill. It wasn't until a year later that I developed vital sign changes (ie POTS).Sue, I found this website with a workout routine that sounds perfect for us. It is a "GO SLOW" routine that I never thought I could do but I'm going to give it a try. I agree with TXPOTS, I will settle for a 50% functioning if I never have to go back to what I was feeling at my worst. Here it is: http://www.hyperadrenergicpots.org/BENEFITS--OF---EXERCISE.htmlI read that entire website last night and I really liked it. Great information!I really liked this too. I didn't realize it - but I'm the combination type. I wondered why the normal meds for hyper didn't work for me either. It would have to be the most difficult kind to treat. This has good info in it. I hope she expands on the site. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 12, 2011 Report Share Posted March 12, 2011 I have this happen too. Why do you think we lose blood volume and collect fluid in the ab - at the same time. I know this causes a start of the renin/aldosterone process - but why does this happen in the first place?Issie, I was wondering too. I've been trying to read up as much as I could about Nutcracker Syndrome, which also relates to pelvic congestion syndrome(PCS). I know this is a simplistic theory, but what if when we stand up, the blood pools in the legs real quick, as any normal person would, but then it can't get back up past the pelvic blockages? I know that one of the symptoms of PCS is aching in the legs/pelvis when standing for a long period of time. BUT, who with POTS can stand long enough to see if we have the symptoms???!!! I had horrible pelvic varicose veins each time I was pregnant and assume they don't just go away afterwards. It's almost time for my yearly gyn appt., so I had planned on bringing the Dr. Peter Rowe paper that talks about his findings with PCS. I am 5 years into this, and with not much help from doctors, so:THIS IS THE YEAR ALL THE "ODD" CAUSES GET RULED IN OR OUT!!! Quote Link to comment Share on other sites More sharing options...
issie Posted March 12, 2011 Report Share Posted March 12, 2011 ---------------------------------------------------------------------------------------------------------------------Don't know, but it would make sense. I had varicose vein surgery on my legs when I was only 26 yrs. old. I have EDS though - so there is allot of circulation/vein issues in my case. I also had endometrosis and that is connected to PCS too. I'm sure there is a connection. The other connection is high estrogen. Only thing is we've got guys here with this abdominal filling and low blood volume. Unless there is an estrogen imbalance there or laxity with the veins/fragile veins. Not sure????? The nutcracker syndrome has something to do with the kidney - if I remember right. I'm sure that some sort of kidney misfunction is involved - just not sure where it comes into play - other than with sodium and aldestorone function. We have lots of little pieces - if we could just put the puzzle together!!!! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 12, 2011 Report Share Posted March 12, 2011 Oh guys can get it too--it just ends up being called a varicocele--instead of females having the left ovarian vein being enlarged and congested due to the nutcracker of the vein, in males it causes dilation and backup of the vein leaving the testicle. Quote Link to comment Share on other sites More sharing options...
issie Posted March 12, 2011 Report Share Posted March 12, 2011 Oh guys can get it too--it just ends up being called a varicocele--instead of females having the left ovarian vein being enlarged and congested due to the nutcracker of the vein, in males it causes dilation and backup of the vein leaving the testicle.Oh, but what if you've already had the hysterectomy and there are no ovaries to have vein enlargment to? I still have the swelling in the ab and I know it's fluid. I can gain as much as 10 lbs in a day. It also showed up on a MRI and it was suggested that something be done in regard to my fluid levels and swelling. But, I guess the doctor just skipped over the suggestion. I found that the other day, when I found the report. I have real bad swelling in my legs and hands too. They did a MRI on my legs because of how swollen they are. That didn't show anything. I don't have the swelling like a person with lymph edema though. But do have lypoma's that swell with fluids. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 12, 2011 Report Share Posted March 12, 2011 I have no clue. I certainly don't know enough about Nutcracker to understand what happens with no ovaries. My abdomen can swell within a day, but I don't gain any weight along with it. Mine is more of a redistribution of what I already have. It is very annoying, I know that! Quote Link to comment Share on other sites More sharing options...
issie Posted March 13, 2011 Report Share Posted March 13, 2011 What I can't understand is all this swelling and feeling dehydrated at the same time. It really makes no sense to me. It's like maybe a filter system isn't working properly. Maybe the lymph system. But the blood volumes are too low. Are we pulling the water content in the blood out of the veins and it is distributing elsewhere in our body and not keeping the water content in the blood? The blood thickens and doesn't flow properly and therefore doesn't carry oxygen correctly? I don't know.........Why isn't the lymph system carrying the fluids out of our bodies properly? Is that part of the problem? Or does it have to do with the blood, heart, veins, kidneys? What????? And, in my case, why do I have weight gain with fluid and the fluid isn't being utilized where it needs to be and I dehydrate? With me, my guess is the connective tissure disorder - not sure. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 13, 2011 Report Share Posted March 13, 2011 I do know that in protein deficiency, water "third spaces", or seeps out of the vessels into the interstitial(?) area. That's why you see alot of the 3rd-world children with protruding bellies, from what i understand. Could we have some kind of problem utilizing the protein that we take in?A long time ago(well, maybe 15 years ), when I didn't have POTS but was somewhat less energetic than I normally was, I went to a "natural" doctor. The first thing out of his mouth was that I was protein deficient! I have made a concious effort to take in protein with meals(whether meat or beans). Maybe I don't break them down correctly?? Any other ideas? Quote Link to comment Share on other sites More sharing options...
issie Posted March 13, 2011 Report Share Posted March 13, 2011 I do know that in protein deficiency, water "third spaces", or seeps out of the vessels into the interstitial(?) area. That's why you see alot of the 3rd-world children with protruding bellies, from what i understand. Could we have some kind of problem utilizing the protein that we take in?A long time ago(well, maybe 15 years ), when I didn't have POTS but was somewhat less energetic than I normally was, I went to a "natural" doctor. The first thing out of his mouth was that I was protein deficient! I have made a concious effort to take in protein with meals(whether meat or beans). Maybe I don't break them down correctly?? Any other ideas?Could be!!!!!!In fact, I'm not eating that much meat protein because when I do - I don't digest it properly. It sits there and I'm miserable. Could be a lack of certain enzymes to break down protein. So, the protein we do eat - we don't assimulate or get the benefit from. Okay - - - -digestive enzymes with everything I eat -- here I come. That's about how I look, like a starving child - but I'm overweight. I've also heard that some people are overweight because they are trying to get the nutrients they need in their body and in fact are starving because they don't break things down properly to have what the body needs. Maybe this is a part of the picture. Digestive system out of whack!!!! It could have everything to do with well . . . .EVERYTHING! I think probiotics would be a good idea too. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 13, 2011 Report Share Posted March 13, 2011 I don't tolerate any probiotics, so I will be skipping that. BUT, I have a container of rice protein powder that I have used sparingly here and there in a fruit smoothie. I think I will test this theory and put some powder in a couple of glasses of milk tomorrow and for a few days and see what happens. I do know that extra protein is hard on the kidneys, so I'll have to make sure my doctor does some kind of labs next week. I took digestive enzymes last year and documented my "journey" on here for about 6 weeks. They seemed to really help, but then I started with my "vasodilating" hands and quit the enzymes thinking they might be the culprit.I wonder if my gi doctor would prescribe me some prescription enzymes? I might have to check into that. But, if the protein supplement helps, then I won't need it.I want to add that I am 20 lbs. overweight, but I have a "belly". And it is not soft--it is hard! Quote Link to comment Share on other sites More sharing options...
issie Posted March 13, 2011 Report Share Posted March 13, 2011 I don't tolerate any probiotics, so I will be skipping that. Not tolerating probiotics is a telling sign. If you have too many "bad" bacteria in your gut and the "good" starts eliminating the "bad" and you have die off - you get really sick. Could it be that that is why you think you don't tolerate probiotics? If you have a severe reaction - likely that's what happened. A good sign you NEED them. You also probably need to get the milk free ones. It would also be advisable to stay off milk products too. The sugar in the milk can feed the bad ones. Unless it's like a yougart with the culture or buttermilk. Quote Link to comment Share on other sites More sharing options...
issie Posted March 13, 2011 Report Share Posted March 13, 2011 I want to add that I am 20 lbs. overweight, but I have a "belly". And it is not soft--it is hard!I used to have the really hard, like a tight drum belly. Since I got off of glutten, dairy and sugar - it's gone back soft again. People think I've lost allot of weight because my belly isn't so hard any more. Something to consider. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 23, 2011 Report Share Posted March 23, 2011 Okay, Issie, a bittersweet problem. I took my digestive enzymes with my meat I had for lunch. Within an hour, I felt very "vasodilaty", and you could see the vessels standing up on my hands. I was also hot. But, not long after that I noticed I was more alert and felt like doing something.If only I could match the body with the mind at the same time!!Any idea on why digestive enzymes do that? I know that they have alot in them, including bromelain and papain. I think those showed up on the "histamine" list from a couple of days ago(as pineapple and papaya). Quote Link to comment Share on other sites More sharing options...
issie Posted March 28, 2011 Report Share Posted March 28, 2011 Not sure why. It could be that the bromelin and papaya was a factor. I know that bromelin can thin the blood. Don't know if a histamine reaction would have been this result - but yes, they were on that list. I eat allot of both of these and I'm leaving them off this week to see if there is a difference. I still think our first idea about low protein levels could be a factor. And we need the enzymes to digest the protein for sure. Maybe HCL with pepsin. You can get enzymes without the added fruit enzymes. So, maybe that would be the way to go. Quote Link to comment Share on other sites More sharing options...
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