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I have spent my entire life, at least as long as I can remember, with a ‘normal for me’ temperature of 97.5 (give or take .1 or .2 either way). I knew that my hands and feet were perpetually resistant to warming and assumed that the two were related. The coldness of my skin would ‘freak people out’ regularly but I would just say “cold hands lead to a warm heart” and didn’t think much about it. I would even get darkened nail beds with purple, white, and orange splotches on my hands during times when they were bothersome and not wanting to warm up.
I now realize that I’ve always struggled to do things like going swimming because I practically freeze to death – at least feel like I was. I didn’t let it bug me really but would, instead, just lounge in the sun like a lizard (you know how they need the beaming sun to warm them, well I would actually visualize this about myself – all in good fun, of course).
My blood pressure has always been low. The doctors have always bragged it up about how great it is that my blood pressure is so good. I always felt really proud and healthy about this. I think I also related it to my always low body temp and never really thought anything bad about my temp. Wasn’t exactly crazy about the freezing hands and feet but I certainly didn’t feel it anything to complain about.
Bloodwork: always too high or too low thyroid, high strep, macrocytosis, low folate, and lotsa other Hs and Ls (for high and low) that have never been reviewed with me. I’m not sure even what bloodwork might be revealing. I know I spent time thinking that I might be suffering from systemic poisoning since I felt so ridiculously and insanely crappy. Chinese drywall, fracking?? I’ve had friends (who live where I used to live) suggest the fracking because of all of the ridiculous and horrifying symptoms that have been crushing down on me. I’ve had them even freak out, telling me to get outa here because they’re scared for me. I’ve gone darn near nuts trying to figure out what on earth could be causing SO MANY PROBLEMS! Is there any bloodwork that would or could be helpful or provide pertinent information?
I’m not even sure how to provide my (“Don’t worry, your Ellen Danliss is going to get better” after threatening that I just ‘sit right there while she gets the social worker’) PCP with information. When I look at the CCSVI handout, it doesn’t even mention Ehlers Danlos and I’m already treated like a mental patient exaggerator by this third PCP whom I’ve now seen 2 or 3 times because ‘ha ha, my bloodwork is normal (or relatively so) so ‘in my face”! Surely, I cannot take in something about CCSVI that doesn’t even appear to relate to my EDS. Then the last PCP didn’t believe in fibromyalgia and wrote a bunch of offensive crap in my medical chart as a result before she disappeared from the clinic with no notice and I showed up to wait 3 + hours to see the Ellen Danliss replacement doctor. The one before that was somewhat amazing and knowledgeable but didn’t want to do referrals. I think he left, in part, because had many major health concerns (which is why I think he understood, some of my symptoms matched his). So, I’ve had 3 PCPs in approx 2 years. Great! I can’t keep going through this. I need support. I am not a doctor nor do I want to go through this mess of research. I digress….
How do you get a doctor (who, Praise God, is willing to refer) to treat or maintain me when they don’t even ‘get’ EDS or seem to care to? Who can I have her refer me to who will ‘get it’? A knowledgeable internest was suggested. What type of verbage do I use? You just aren’t cutting it!? I can’t really ‘go commando’ on this. I need some sort of documentation since I have so much trouble with GI and meds. I need another set of input when my health is this much of a mess. I would have to be a fool to try and do this on my own, such a complex and tangled mess, so many problems. Is there anything tangible that might entice a ‘lay’ doctor to comprehend ANY of what I’m going through?? Her one experience w/eds was a guy who got hooked on pain meds while she was in medical school but his Ellen Danliss is much better now. I mean, is this medical negligence or what??? Worst part is that I am grateful to God to have any care at all! Or is that the best part? I’m grateful beyond words that she will actually refer me!!
My genetic doctor diagnosis and makes recommendations to specialists, doesn’t manage the care.
My cardiologist says my heart is stable.
My genetic doctor says that while my heart may be stable, there is something wrong with it and I need to know WHY.
My endocrinologist says that some people require extra testing for more sensitive thyroid problems. Yeah, I know, so what next???
I love my podiatrist. She has a grasp of connective tissue disorders but is, sadly, limited to feet.
I also love my physical therapist. She has MS and really understands a FEW of the dreadful symptoms that I go through. She had to fight for her health and encourages me to ‘keep on fighting’. The only problem is ‘with what reserves?’ Exercise is supposed to be good for my conditions per my understanding. She’s given me advice on frozen shoulder, among other issues.I’m up this (ooh, word scramble) creek without a paddle. I bawled my eyes out when my genetic doctor told me that I had to educate my doctors. How to approach someone who has been mistreating you and educate them. Heck, if I were capable of being a successful educator, I ASSURE YOU THAT I WOULD HAVE A J-O-B IN THAT FIELD! Hello, I’m the one who NEEDS the help!!
Anyway, do the low temperatures mean anything? Does the low blood pressure? is there anything here that I could point out to my PCP? Anything else that might justify some helpful diagnostics? or referral? to what type of doctor? Any meaning to the bloodwork (it’s the only that has actually been reviewed with me, the rest is H or L to me).
Thanks for any inpu
Hi
You mention Macrocytosis in your blood work, did you mean to say this ? What drugs are you on for that ?
Regards
Barbara
(UK)Hi
With regard to your CCSVI experience, which country are you in ? Here in the UK, they have only agreed to trials for CCSVI in MS sufferers, maybe because the guy who discovered it was only looking at MS people (the rest of us get NO options!!) that smacks of inequality to me. I don’t think they have grasped that CCSVI is an entity unto itself and not exclusive to MS sufferers,
Regards
Barbara
(UK)Yes, I meant to say macrocytosis (enlarged red blood cells). I am on no medication for this. The doctor who actually told me that this was discovered (within the 24 tubes he ordered to be taken from my 5’8″ and 110 lb terrified body) is one who treats me like a whiny hypochondriac. The nurse almost collapsed my vein and I was purple and had regressed to the mentality of a horrified 3 year old. This was the only bloodwork (aside from TSH) that has been reviewed with me. I was refused a Free T4 for a couple of years.
Anyway, yes, macrocytosis. Please feel free to let me know of any potential medical negligence. While I live in a relatively lawless state within the US, I’d still be interested. Also, I’d like to figure out what to make of the various doctors and whether or not I can trust them or should avoid them at all costs in the future.
As for the CCSVI, I know almost nothing about it. This is the one that Dr. Diana can diagnose with an MRI or MRA, I think. I do think I need an MRI for that and if I submit myself to more traumatic testing, I will be sure that it is ‘expert approved’ by a doctor who understands EDS and associated issues that I have (like Dr. Diana).
I will continue to read and re-read your response and your interpretation of my X-rays. Of course, I fully understand that it is not a medical evaluation. I’d just like somewhere to start and know whether or not I need to explain to the doctor that I am, indeed, having some issues. I know I feel terrible and have always been told of misalignments (which I assumed chiro care or time had remediated).
OH, NO I DID NOT BUMP MY HEAD prior to that X-ray. I did have a concussion but that occurred later, maybe around 2002 or 2003?
Thanks, too, for endo info. I began to respond but was so exhausted that I found myself running on. I ended up copying and pasting into emails so I could review what I was trying to say and post back to you later. I do this a lot when ‘brain fog’ kicks in on me and I can’t finish my task or lose track of my composure. I also felt that I was whining too much. I guess, beware of run-on, whiny post under endo section since I am, again, feeling exhausted and won’t be able to edit myself much in the case I decide to go ahead and post now. 🙂
Did you think I meant macrocytosis? Is there a medication for it? The doctor told me that it’s something alcoholics get. Well, color me purple! I’d be terrified to even attempt a glass of wine these days. I’m so dysfunctional that I can’t afford to lose a shred of my ‘wits’. I can’t risk a glass of wine. I do miss having wine with dinner in the past or chillin with my co-workers and having a glass after work or even just enjoying one as a toast to my health, success, and happiness! It couldn’t be more diff now though! Then the doctor peered at me to see what my reaction would be if he implied that I might be an alcoholic – mine was a look of utter shock and being blown away by the mere implication! I had to look up macocytosis when I got home but never really ‘got it’ or else was simply overtaken by the multitudes of ailments that plague me daily.
Thanks for taking a peek at these posts. I appreciate it a lot!
I did not have a B12 or D deficiency, as I recall. I was low on folate. I asked, “Don’t they routinely add that into diet via things like bread?”. The doctor didn’t know. I knew because I am a meticulous pregnant person and, as a result, had become intensely aware of nutrition. I eat plenty of things with folate but I guess I was low. I think folate is water soluable so it wouldn’t be tough for it to take a quick ‘dip’. Is this correct?
Then nobody understood the high strep. I even asked another doctor (the one who didn’t believe in fibromyalgia) and when she finally located it within the multitudes of bloodwork which was ordered she was very confused, said she didn’t know, and swept it under the rug. I haven’t heard any more about that one. ASO titer or something. I hadn’t had strep. A little while later tested negative for strep. If it’s causing me to feel this bad, I’d love to try and handle it though. Know what I mean?
Since I don’t know the abbreviations, I have hundreds of blood results and many of those that are H and L (high and low, not normal) and I have no way of having any idea if there is meaningful information within my bloodwork.
Hi there. I’m sorry I don’t really have any answers for you on how to find the right doctors. But, on the temperature issue I can tell you that me, my mother and my daughter all have the same issue. Ours sometimes drops to 96.8 or so. All doctors have always said that it’s normal and not to worry about it. However, I’ve seen many other people in these forums mention the same thing. I’m wondering how common it is among the EDS / Dysautonomia community and what, exactly, the connection is.
Hi Megha,
Thanks for mentioning. I’ve actually noticed that it’s not necessarily quite as benign as I’ve always been led to believe. Believe me, my temperature is among the least of my worries but I do wonder if it has any meaning.
Another weird thing, I’ve noticed people mentioning smelling random things. I’ve had that oddity too. Keep smelling cigarette smoke every now and again. I kept feeling confused about it because it was 100% impossible that there had actually been any cigarette smoke nor could there have been any source of this when this happened. Yeah, I can understand ‘blowing off’ getting a whiff while outside in a residential neighborhood. Maybe the wind could catch it and blow it around – no telling. I was smelling it when it was impossible, like in my home where nobody (smoker included) had been there. I don’t smoke. Impossible. Today I smelled popcorn and it confused the heck out of me. I should probably try to find that post and add my info. It was on here somewhere.
How’s your blood pressure? Do you ever have the feeling that there is no blood in your freezing cold legs and feet when you sit? Can’t help but ask since I haven’t been able to warm my legs from the knee down for the past few days (heater won’t work, heating pad won’t work). I wonder if frozen extremities have much to do with LBT or LBP? I mean it’s so bad. Anyway…. a day in the life….
Hi yes I can relate to the below normal body temperature (that’s normal for me) sorry I can’t do the conversion at this moment. I believe it should be 36 point something and mine’s always between 35.4 and 35.7 and rarely at 36 or above, in fact, when for me my temperature is up, it’s not spotted because it comes back within the normal range!
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.I can also relate to the ‘smelling things that are not there’ – I smell smoke when there is none, yet cannot smell my bacon burning (in fact I’ve often forgotten that I’ve put it under the grill, even though it was only a couple of minutes ago!). Doh!
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.It’s probably related to the dry eye, dry nose, dry mouth (need to drink like a fish) that many of us suffer from.
Regards
Barbara
(UK)Hi Megha,
Thanks for mentioning. I’ve actually noticed that it’s not necessarily quite as benign as I’ve always been led to believe. Believe me, my temperature is among the least of my worries but I do wonder if it has any meaning.
Another weird thing, I’ve noticed people mentioning smelling random things. I’ve had that oddity too. Keep smelling cigarette smoke every now and again. I kept feeling confused about it because it was 100% impossible that there had actually been any cigarette smoke nor could there have been any source of this when this happened. Yeah, I can understand ‘blowing off’ getting a whiff while outside in a residential neighborhood. Maybe the wind could catch it and blow it around – no telling. I was smelling it when it was impossible, like in my home where nobody (smoker included) had been there. I don’t smoke. Impossible. Today I smelled popcorn and it confused the heck out of me. I should probably try to find that post and add my info. It was on here somewhere.
How’s your blood pressure? Do you ever have the feeling that there is no blood in your freezing cold legs and feet when you sit? Can’t help but ask since I haven’t been able to warm my legs from the knee down for the past few days (heater won’t work, heating pad won’t work). I wonder if frozen extremities have much to do with LBT or LBP? I mean it’s so bad. Anyway…. a day in the life….
I’m not having problems with the freezing legs and arms currently, but I do still often have freezing hands and feet. And at times the only way I can get warm is to stand in a very hot shower or soak in a very hot tub. That hasn’t happened to me recently, though.
Hi Guys, concerning the “weird smells”, I believe we are experiencing “olfactory hallucinations”. This may be secondary to pressure on the first cranial nerve. When this pressure is relieved with Diamox, many people go through a lot of olfactory hallucinations again (I think the nerve must be getting stimulated from pressure and from the release of pressure, but that is pure conjecture). Did you see/fill out the “Symptoms Checklist”? It would be GREAT if you could help us with that. It is under “Articles and Handouts” on the front page of the website. Thank you!! Concerning temperature, most of us are hypothermic, as are most MS patients. I believe I know why, but will have to wait for the treatment trials coming up to take care of this symptom. My hypothermia got so bad, that it was PAINFUL. If one inch of my skin was exposed to air, I was miserable. Looking back, I had episodes of this a couple of times many years ago. I’d have to get in a hot tub to bring up my body temperature. Yup, that is autonomic dysfunction FOR SURE. 🙂 Diana
Hi, though I’m not sure exactly what Diamox is doing for me, because there’s nothing obvious happening to me, I did notice a smell last week that I hadn’t been able to smell for ages (though I can’t for the life of me remember what it was, now I’m trying to recall it – so my memory is still shot!)
Regarding the olfactory hallucinations though, yesterday my Coco Pops smelt of cabbage and they weren’t enjoyable, today they don’t (they taste great) and they’re from the same box! So I think you could be right.
Regards
Barbara
(UK)I struggle to stand in the shower now, for some reason. No, not because the water is too warm either. I can’t tell you how many times I’ve had to get out with shampoo and/or conditioner left in my hair just so I could sit down or lay down – even just to stabilize myself on the bathroom floor to keep from falling or something. Ridiculous. I have had success warming up in a bath before or spending exorbitant amounts of time with an electric blanket (and I think even then, I only warmed after falling asleep – possibly for hours). I would actually be afraid to take a warm bath now since heat crushes my chest in a suffocating sort of way. I used to be like a lizard and just soak up the sun like nobody’s business – I cannot anymore. I used to have issues with frozen appendages but now I have intense problems regulating either way – can’t handle cold but can’t handle heat either. Sometimes I’m freezing half to death and other times I am frying, sweating, and burning – the undersides of my feet blow up painfully (one of the things that affects my walking) and my toes feel like burning hot dogs on a grill getting ready to split open. I thought that was neuropathy? I hate having BOTH hot AND cold problems. Even though my frozen appendages used to freak people out, it was easier to deal with one issue by saying, “Cold hands, warm heart” and continuing on with a smile. 🙂 I had no idea it might have been a clue of things to come. Nowadays, It’s not so cute when you’re burning up with sweat and smelling like cat pee. 🙁 There’s nothing cute about what is happening to me now. From Cinderella to the Elephant Man sort of deal. Quite a shock in oh so many ways!
Blessings to you. 🙂
I struggle to stand in the shower now, for some reason. No, not because the water is too warm either. I can’t tell you how many times I’ve had to get out with shampoo and/or conditioner left in my hair just so I could sit down or lay down – even just to stabilize myself on the bathroom floor to keep from falling or something. Ridiculous. I have had success warming up in a bath before or spending exorbitant amounts of time with an electric blanket (and I think even then, I only warmed after falling asleep – possibly for hours). I would actually be afraid to take a warm bath now since heat crushes my chest in a suffocating sort of way. I used to be like a lizard and just soak up the sun like nobody’s business – I cannot anymore. I used to have issues with frozen appendages but now I have intense problems regulating either way – can’t handle cold but can’t handle heat either. Sometimes I’m freezing half to death and other times I am frying, sweating, and burning – the undersides of my feet blow up painfully (one of the things that affects my walking) and my toes feel like burning hot dogs on a grill getting ready to split open. I thought that was neuropathy? I hate having BOTH hot AND cold problems. Even though my frozen appendages used to freak people out, it was easier to deal with one issue by saying, “Cold hands, warm heart” and continuing on with a smile. 🙂 I had no idea it might have been a clue of things to come. Nowadays, It’s not so cute when you’re burning up with sweat and smelling like cat pee. 🙁 There’s nothing cute about what is happening to me now. From Cinderella to the Elephant Man sort of deal. Quite a shock in oh so many ways!
Blessings to you. 🙂
I’m soooo sorry, Hon. Does it help at all to know that you are not alone in this? Like most of us, I, too, started out with horrible hypothermia, then went to the intolerance of a one degree temperature change in either direction. I had a fan and a heater with me at all times. CRAZY. Folks with “chronic fatigue” or “M.E.” describe the same thing. I do believe I know what is going on, and how to reverse this. Hence the push to get the trials going!!! You’ll be hearing a lot about them in the upcoming future. Hang in, my friend. Big hug, Diana
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