comfortzone

I had training in it as a nurse back in 2002 I think it was - so my best guess is that if they can't get rid of the pain and issues causing the pain that are physiological -- they can at least teach you techniques so that you learn to 'perceive' things in the best possible light or healthiest light. So if you are saying, 'this always happens when I do this' and you are kind of negative.... CBT would have you go to the triggering event - say calling someone - and then have you examine you response to that event .... They point out 'falsities' in the way you think. So if I say this always happens - that would be an instance of all or nothing thinking -- or black or white thinking....where in reality it might no absolutely always happen.... If I say, 'if I walk a mile I will have a miserable rest of the day' -- I am in essence predicting the future... which of course we can't do. Don't quote me on this LOL - been quite awhile - but CBT helps to restructure and get out of the automatic loops we find our thinking. Helps get rid of our knee jerk responses to certain triggers. I'm going to get out of that practice of p.m. docs because I just don't care for the whole 'family' taking your money system and the 'greeness' or youth showing it's inexperience by having a know it all attitude for the most part.

Sandy - I do hope your appointment goes well or I should say went well at the CC for the GI stuff.... Hang in there - things do always change - and for you my dear it's time they change for the better -- only the best to you!

Well I guess I now understand that somehow eds and sfn seem to go hand and hand for a good measure of people but not all.... and that Pots goes with sfn too and that eds goes with pots..........No wonder I'm confused. it seems bendy, dizzy, and burning, tingly, painful nerve pain are the order of the day for people with this cluster.... i feel a song coming on.... i have to make jokes so that i don't cry lol thank you to all who wrote to explain what they know about this thing called small fiber neuropathy... i'd love to deny it - but it's there - and i have the skin biopsy scars to prove it. dang i thought they would be teeny tiny as the size of a pen tip is all the skin they took in two places........but it fills in from the middle and now on my skin are two very red kinda big dots -- there goes my modeling career! just kidding the joint replacements and extra poundage took care of that awhile back... hugs

Hi issie -- Are you going to have a big nerve biopsy or the skin biopsy that looks at the small fiber nerves? I trust you are in good hands and do please keep us updated on what they do and how you fare....and hopefully some promising results for having had the biopsy.

Another nurse for 24 years till I became unable to work at my nursing job end of 2008 because of my physical frailties. Yes it was partly my nature and partly my fearlessness in attacking the insurance issues, the doctor personalities and issues, my insatiable desire to know what was wrong so I could fix it ---- when doc after doc tried to sweep me under the rug. Quite frankly I would not let them. I look back at the calenders from those two years till now and doctor visits equalled a near full time job. Literally. Sometimes three appointments in one day alone. One appt. would lead to a dead end I'd press for the next. One might be semi-fruitful - I'd press for the next. And I'm STILL seeking more definitive answers two years later. I will not be done - well till I'm done or made to quit my research. I would do this for each and every one of my patients as best I could. The less than desirable climate of management in some hospitals made it near impossible to advocate for patients for fear of stepping on someone's toes, or insulting someone, of being reprimanded for being insubordinate LOL.... you know it didn't matter. My patients were my patients and I'd do for them what I'd do for me -- if they desired my help. So yes perhaps there is some truth in our doggedness to get the answers we need and we have the guts to do it. We know there are many fish in the sea as far as medical caregivers and what doesn't work for one person - may work well for the next -- but you have that sixth sense or nursing intuition to tell you if someone/something's smelling rotten - and sure enough when it comes to unusual cases - the rotten ones seem to be those with ego's unable to handle a simple "I Do Not Know" uttered from their lips. Bless the wise ones who admit such and weep with you at least.... The other danger of course the 'I know it all' when they've only just met their '1st' one in YOU. Balancing listening with appropriate questions, teaching with learning, proven science with anecdotal victories - it's a juggling act to be sure. I'm now looking for a desk job. My EDS is trumping my best cards lately....with one of my joint replacements acting up more than usual just two years after it was put in. Which I guess brings me to my chosen name LOL Nowwhat!

I'm trying to figure out where my newly dx'd small fiber neuropathy figures in - as far as my symptoms.... Then I got to thinking - how many of you have it? Did your doctors share the reason for your SFN or was it just 'idiopathic' and no real reason surmised or contemplated.......? Is it a true common finding with dysautonomia? Or is it only with EDS-HM dysautonomia patiens? Or is it because of blood glucose/insulin issues?........ I get sooooo confused lately about this mess....... Does EDS cause it? Does POTS cause it? Sorry if I already asked this...awhile back - I can't remember my name lately! Too much stress lately...

My neuro said to drink G2 and I sub with Powerade Zero as they are only 88 cents locally lately. Yet I'm on a diuretic and should limit sugar d/t hbaic of about 6 over the years. I get dizzy if I stand too long. Heck if I get ANY fluid in a day other than a cup or two of coffee in the morning it's a major feat. My thirst thing doesn't work - I do not enjoy the 'job' of keeping hydrated......to me it's real work and I don't notice much help with it -- TP in the bathroom goes faster and my wallet is out for all the fuss of drinking fluids. But many of life's 'good' things are not easy - so I don't give up and figure any fluid is an improvement over none. I'm a professed salt-a-holic and am told to 'don't do that'..........yet I crave it daily. My b/p is hi..then it's low. Then it's high again...... Who knows. I was told that eating diet food such as carrots and celery sticks have a ton of sodium in them and folks don't ever think of that - that because it's a veggie and even if you eat it plain - the fact it comes from the ground I guess can load a food with 'natural' sodium..... Sigh......tomorrow is a new day ..... some times I get overwhelmed with all the 'shoulds' know what I mean? Should wear compression hose, should drink G2, should exercise, should eat healthy, should wear a knee brace to stabilize the patella, should, should, should..........?

This is very interesting and helpful - thank you! I swear when I read the charts provided in this article about all the different bodily things that suffer with/or for having POTS - I have them all - but no POTS..........I just don't get it.... Vasomotor issues, sleep issues, digestive (gerd), constipation, orthostatic intolerance.......and more - but yet because my actual heart rate that runs 100 at rest without meds........doesn't jump up 30 points or more I don't have POTS...... Instead I have all the disability and such .... but no 'title' or name for it..... That's why I must afford one last visit to an EDS/HM specialist......to ask what's what by their opinion......I'm messed up on so many different fronts ... fromm distressed joint replacements to EDS to pots-like stuff and chronic pain...muscle weakness and neuro things......Yet I see I need to actually begin a diary of sorts of how it is to live in my shoes in a real world where many never struggle to get out of bed, to walk etc.... Thus far disability is granted by arthritis alone. A 'way down the road' effect of all the other issues that were progessing of which I was so ignorant of.......It's so hard to have your "job" turn into seeking doctors and wisdom as you progress from one aspect of your disability to another - employing so many specialists!! It's enough to make you crazy if you weren't already.....you get so so tired.... But whine? LOL no not me hahahaha! Yes lately I whine too much - and prolly would do well to 'fine wine' and relax a bit about it all and have a good laugh..........crying gets me nowhere!

A nice book to have on hand is Dr. Tinkle's new one on EDS - called the Joint Hypermobility Handbook - in it is a chapter devoted to social security -- and what they look for etc. It's basic info - but heck it's a great book and on top of that it's all about you.......the EDS patient. This book is on the heels of his first book in 2008 - Issues and Management of Hypermobility (for HMS and EDS-HM) which was a best seller in four book categories. I find him an amazing resource ... so much so I had him sign or autograph my book when I met with him earlier this month! Thanks for the great tips on disability given by the others that posted here........this is so helpful -- there is also a book called Persistance is Power - a real world guide for the newly disabled --- with lots of info that one could find helpful for trying to get social security benefits and other ltd bennies when disabled. Blessings your way!

Dunno much - but I have some issues that are pots-like my entire life - but only recently got the dx of the hypermobile eds... I was told that this is common - eds and pots or pots-like dysautonomia because of how we're wired up. Because of being on the hyperadregnergic side of things - I had studies done for labile b/p or what was perhaps originally called orthostatic hypertension ... but we decided to let that rest for now - as the monitoring needed for a definitive diagnosis on this - would (per neuro and eds doc) virtually need to have you monitored every second of every day during testing and maybe lying down strapped to a table which they told me has been done before but it's so extreme... my measly 24 hour monitoring was a huge pain in the butt and arm lol... so I didn't volunteer for extreme measures - labile is labile I guess... Anyway my b/p turns out thus far to be just essential hypertension with ortho intolerance ......but an incidental finding was one big kidney and one normal kidney - the big kidney turns out to have a double collection system within it with two separate ureters exiting the kidney - that eventually join as one before hooking up to the bladder.......prolly nothing but I do know that's 'me'.... Also my sibs and my dad and myself have days out of the blue every now and again where we 'diurese' or void like crazy with no fluids in........so weird - to each of us - but when talking one day - we all shared we had the same experience.... Might not happen every month - but more than twice a year .... Just going to the bathroom all day long...without any 'reason' - no extra fluids on board etc. Then back to normal Okay that's all I know - blessings your way ... 'Cept that my 'huger' kidney is tthe left one - and the geneticist in SFO wanted to know for sure 'which' kidney it was that was with the extra system......dunno why but it was important to him...or them I should say.

AHA! Just as I suspected -- I am far from alone in this experience. Thank you all so much for the well wishes and for the information. Well I am still feeling like my head is too wobbly on my neck and it's so bizarre - and it's sore today on both sides - but not as sore......mid back threatens spasms - but really doesn't go into them - just sore too. Dang --- what a trip that was! But I don't think any permanent damage was done - gosh I hope not! Today was rather miserable - well the day was good - I was miserable lol.... I had to try to find a PT to get active in some fashion so I called a whole list looking for one that had a wellness program or rehab program attached in some way - so I could keep working out after my PT. The aqua therapy sounded good at first - but heck I can pool walk etc. on my own - and well I have to save something for the wings down the road. I did find a place - who told me they really wish I'd bring them a script from a 'real' doc (to them meaning an ortho doc) and not a pain mgmnt. doc. Well that's okay because I found an ortho doc who'll see me tomorrow - he accepted me after looking at my medical records - brave man I thought haha! So when I see him tomorrow at 8 a.m. - I'll ask for a PT script probably for core strengthening again - or for my right knee (which always buckles ever since it was put in a couple years ago) - that should get the ball rolling. I might mention the whole chiro thing to him and share my experience with the pain doc as well. I don't know what I'd do without you guys - seriously I'm indebted to you -- I may not have 'true' POTS --- but I'm being treated as if I do. I'm on the beta blocker and soon probably trying the Clonidine as it is known to help with pain too. I'm also going to see a new pain doc too - to see if he's any gentler than this guy I saw that wanted the chiro etc...I was silly to think I'd get a good fit on the first try I suppose. My body responds with the hyperadrenergic responses, surges, orthostatic intolerance - etc. but my heart rate never changes that drastically with position change....dunno if there's a name for peeps like me or not - other than stressed to the max.....but y'all know about that all too well... THANK YOU ;-) Arizona Pots people - if you want to get together I'm so game - we could meet for lunch maybe? I see Dr. Goodman in follow up the first week in November -- I know some of you see him also...... I'm residing in Scottsdale now - feel free to message me ... and sry if I didn't return messages...this move has been taxing!

The source of my orthostatic intolerance issues could be my hypermobility syndrome -- and this is a painful condition that is very challenging to deal with.... In a recent relocation to a new area I found a primary care doc who asked I go to a pain mgmt. doc for pain meds. So I did. He told me they strongly recommend PT, Chiropractic care and CBT (cognitive behavioural therapy) -- pretty expensive and lots of hoop hopping to get my basic tried and true pain medication. So I give it a try - insurance won't pay for the CBT -- PT might be aquatherapy -- but only if and when I get over my second chiropractic visit... I've never had one before -- so the first visit she just put a back rub machine on my back and a laser on my back I guess. It was mild and I may have felt 10% better the next day. The second visit was totally different. It started with a brief laser treatment thing to my back. Next all I remember is that I was nervous so I talked alot the whole time... She did a bunch of stuff with my neck while I was lying on my stomach -- and a bunch of stuff on my low back by moving the table side to side. She knows she has to be careful due to my eds - and she's seen my neck xrays. As I got up to leave and reschedule for my next appt.... the scheduler says 3 times a week next week... I started to feel kinda sick -- really weird -- so I said - , 'no how about for me - just 2 times' -- I kept trying to deny I felt horrible -- but pretty soon - I told her I think I'm sick and I must sit down (or fall down) -- so I did - I was so scared because I didn't understand what was happening - I actually teared up a bit - but then got a grip -- finally after a few minutes I was handed my appt. card by the receptionist. Great I thought. Well anyway - later that day I was super sore in my neck - like a stiff neck - but on both sides.... then my low back chimes in with worse pain -- I was pretty miserable -- and now tomorrow is the third day since the appt. and I'm thinking I better cancel my Tuesday appt. Dunno what happened - but I don't want to risk this happening again. Have NO idea why I would feel so awful from something so simple as ?a massage? I don't get it - but I'm definitely not a fan -- was that vaso-vagal response? Why so sore still today? Thanks everyone!

Thank you everyone so much -- you've helped me gain a bit of perspective and sanity in all of this..... I always wonder if I'm the only one -- and honestly I've been bothered with this for quite a long time - but never put it in the perspective of my newish dx of hypermobility eds ... and my orthostatic 'intolerance' I guess (no pots dx).... I used to wonder if it was just because I was 'tall' - as a woman at 6 foot tall - the ground seems like such a long way down! But alas I cannot do as suggested and stoop using my legs and knees and hips - because of joint replacements and a bit of a weaker constitution and some muscle/nerve issues I guess... Still haven't figured it all out ... I smiled about using your feet to pick things up -- and I've tried that with my toes on occasion and have used 'grabbers' to pick things up before too... I never have checked my vitals -- but feel just YUCK when I do this... Thanks again for sharing with me!

nevermind.

Hi everyone! Okay if you are going about house chores or are at work - and your tasks have you bend forward from the waist -- or get semi-crouched or reaching to the floor rather frequently .... Then you suddenly say, "whoa I just don't feel good today" .... and try to think ?why am I having a tough time of it today -- suddenly you think, "you know, it seems like when I pitch forward from the waist -- like to peek in a lower cupboard or pick something up that fell to the floor -- I just don't feel good - maybe it's positional?" So is there a correlation here for anyone? Do you think it stems from a 'neck' issue because you strain your neck bending and getting up again more than you realize...and maybe you have neck issues that are bothering your autonomic nervous system some how? Or is it from squishing your stomach or abdomen in the position change forward - so you do something to the blood distribution? It's not exactly dizziness -- but just 'I want to lay down, I don't feel well' Any comments much appreciated... I recently moved and the packing and unpacking is beating me up!

Does your family have a primary pediatrician for your daughter? Or are you located near a tertiary care center like a big university medical center? It seems that this would all be able to be figured out with a couple of visits with a very astute primary pediatrician who is integrated into a system that does nothing but amazing consultive work for unusual cases. It's great you have the immunologist and all - but it seems as if a new set of eyes would be helpful to assess the situation fresh....as you've seen that one doc for near 5 years now and your daughters symptoms are ever-changing or at least not getting much better and new symptoms being added. Is there a big childrens hospital near you? I know Phoenix has both Mayo Clinic and an amazing Childrens Hospital -- and there are others in the nation for sure. Anyway sometimes specialists don't like to do much outside their niche - which is fine - but seems you sure could benefit from someone to see things again anew and quarterback the whole work-up for all the different disciplines that could/should be involved. I had a wacko accupuncturist also - and though it was a bizarre experience and I now truly laugh about how nuts the person was -- and how my body responded ... I'd venture there's one oddball story to every thousand good ones.... and the bad aren't really that bad.... you can always leave.......walk out -- you are in control -- not the person with their mini pins in you ;-)

Hmmm... well for what it's worth -- lower limb weakness and excessive flexibility in arms is a pretty common finding in Ehlers-Danlos and Hypermobility syndrome - which is an inherited connective tissue disorder - that is best diagnosed by a geneticist (rather than an immunologist) -- I know you are trying very hard to get your answers promptly - your diligence will pay off in time -- I sympathize and empathize with your situation ... but I just bet you are getting closer through the helps here and your perseverance... blessings.

Ditto on doing things painfully slow toward your goals. Truly benzodiazepine withdrawl or stoppage that causes withdrawl is sometimes managed in the hospital - that's how serious to take this 'heed slow' message. Over a loooong period of time is best in my experience - especially with Klonopin which is a long acting benzo. The long acting ones are the hardest to decrease without getting symptoms - yet it can be done ... and we are talking taking time to get down to a quarter tabe etc... Ask your doctor for a withdrawl schedule - or find one on-line maybe at Dr. Peter Breggin's website (the psychiatrist that is anti-drug)... And as frustrating as it sounds - doing them seperately might be a good idea.... However if your doctor is monitoring you -- I'd follow their advice. Sometimes your sweet little brain just gets used to these meds - and coming off of them can have you with near hallucinations, siezures, nervousness, nausea, being sensitive to the light, sweats etc... In the end you and your doc should be able to take steps to have you meet your goals safely and happily ... blessings~

It's a long shot - but are any of her afflictions an inherited disorder? If they are/were - or end up being so ... a geneticist might be helpful. Dr. Brad Tinkle works out of Cincinnati Childrens Hospital and is about the best doctor out there for inherited connective tissue disorders like EDS and all the others. He is amazing and smart and compassionate. You just may want to shake things up a bit if you think any of this type set of symptoms is being passed on from one generation to the next - by getting a highly skilled competent Genetic Doctor. Their bread and butter is all the complicated stuff, all the rare stuff - and often they come to it through a pediatric population -- yet there are good adult geneticists out there as well such as Dr. Francomano in Baltimore.... anyway blessings to you and your family.

I have leg pains too -- also had 'em as a kid (growing pains) --- I have EDS ... and in having that -- lots of odd pains and sensations in the limbs are pretty normal daily occurences... I just never knew that until recently when I saw an EDS doctor. Are you hypermobile? Anyway now I get burny leg pains... sometimes it's really bad behind knees and feet... guess thats small fiber neuropathy and perhaps something to do with all the odd sensations hypermobility offers d/t varying reasons like our vasculature and other things.... Dunno why some days are better or worse than others -- but it's definitely the case for me --- tonights treatment is half a box of Nilla Vanilla Wafer cookies (the lowfat kind)... NOT to be tried by anyone unless they r thin and need to bulk up the carbs lol...

If the Mayo doctors make you uncomfortable -- talk to their nurse. The nurse of one that ordered the test. If they don't know the answer to your question all they have to do in that system is fire off a short emaail to the doctor for an answer. In my experience answers come within a weeks time usually. Say that you are reviewing all your records for accuracy and find that a couple of things have an asterisk - indicating not within the normal reference range. While you understand that even so -- that it's not to be considered 'worrisome' you would like to have someone to chat with about that very test. That you would feel much more comfortable in being able to learn about POTS and serum catecholamines. I know that if you have high blood pressure the reference range allows for a higher number set than if you are normotensive. I also learned that sometimes people as myself will have a very robust surge of norepinephrine upon changing positions from lying down to standing. This can sometimes reflect in some labile up and down blood pressures....or what may seem initially like orthostatic hypertension. Anyway as you do have POTS and you did go there - yes you have every right to get a thorough explanation -- from the nurse that's on duty for that doctor....or whomever he tells to share with you what you need to know. If the doctor himself calls you -- remember he's just a regular old human being with a day job. A day job to try and help people with health issues. Then just ask your questions with confidence... Hope this works and you get more comfortable with your results and what they mean. I do this very thing all the time. Pick up on abnormal labs and then find resolution for them. I loved it when the Mayo doc noticed an abnormal lab where I did this kind of thing a year ago.... & here he was writing about it in his dictation. It must not have been 'nothing' -- if he writes about it. It may not be 'harmful' but abnormal is still abnormal. And why bother having a test at all - if you aren't going to utilize the information for your best health in some fashion.

Excellent thought......yes I will definitely look into this tomorrow. I guess they are sending me a packet in the mail.....with paperwork etc... But I will definitely look into the insurance aspect of things. I'm so sorry you had that experience... It will likely be cost prohibitory if my insurance doesn't contract with him to be in network.... But I just found out someone cancelled for Dr. Brad Tinkle in Cincinnati next Friday - so I am going to do that appointment for sure.... Maybe then I won't even need to see Dr. H. Or if I do...I'll know so by an EDS expert...that it's necessary or not. I want to be done seeing doctors for a long long time -- just like everyone here! It's been only a couple of years of this seeking answers - and I'm lucky most have come in that two year window....but it's been a long and arduous road... The last little bit is to nail down how EDS fits into all of this.........and if my diagnosis for that is correct etc... I was actually given Benign Joint Hypermobility Syndrome...but many experts say now it's the same as EDS-HM.

The Neurology department at the Mayo Clinics have cool booklets on POTS ... printed just a few years ago. Could you call them perhaps and have them give you a way to get a couple in the mail? Perhaps you could just tell them what you told us here and that you heard they had a good booklet.... I only say that because sometimes the Mayo name has a bit of clout with doctors... Good luck to you!

I don't understand this whole pre-diabetes thing too well myself. What got me started on that path -- was a med I was on once is known to cause diabetes....because of that the doctor did a hba1c 5 years ago and it was 6.0 I was put on Metformin and it never changed the hba1c....it remained 6.0 So they took me off the Metformin - Then out of the blue I get small fiber neuropathy causing painful feet....began about two years ago. Now just this year it's getting pretty bad and moving up my legs and my hands hurt too - same kind of pain.... YET.... I just did a 2 hr. GTT --- my fasting was 118 I believe and my 2 hour was 118. Diabetes means the fasting is over 126. No one did an insulin test on me yet. I wonder if I need one? Maybe my neuropathy has nothing to do with my sugars. I have no idea. But wow if it is from my sugars....poor little nerves are really angry from sugars rather mildly elevated for a few years. Anyway the doc said to lose weight and to exercise...latest research shows this to be more effective than Metformin for those that are overweight such as I am... and exercise is good if you are any weight at all for blood sugar control. Not much help - but this prediabetes thing may not be as harmless as it sounds -- if SFN is from that. Ouch.

Local home health agencies can bring a wealth of information to the table. Sometimes if someone happens to be freshly discharged from the hospital -- the case manager at the hospital can arrange for a few nursing visits, home health aide visits, social work visits, physical and occupational therapy visits and respiratory care visits. The first of the visitors does the intake and then orders the appropriate treatment team and modalities. It's then that you have a captive audience and can ask the home nurse a ton of question as to how to best get a loved one to take meds in a timely fashion daily, get food organized, have the home be safe etc... The social worker can be the most effective member of the team for these kinds of social situations....they often have insights as to what's available community wide to aide someone or their loved one in againg or sickness. Sometimes you can get 'free' information from a local reputable home health agency too....such as phone numbers or a list of agencies that provide light housekeeping, some basic ADL care etc... Non compliance to medications can be multifactorial in reasonings....sometimes the reasons escape people .... such as the person simply not caring....or any number of psycho-soc reasons aside from forgetting. Wishing the best..