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friday
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HI. I'm very new here but not to health support groups. I started out with Hypoglycemia, found out then I was anemic, and was diagnosed with fibromyalgia and cfs. It was from a few links from them that I found out about POTS . The thing is in the past few months I have been having very weird and scary symptoms that docs won't take seriously. First my right toes went numb. Off and on, more on than off. then A few months ago i noticed trouble breathing. Which is sort of hard to explain. It's like I'm out of breath, breathing short shallow breaths. Then I had heart palpitations. The next day I woke up and my left arm was numb. Okay I panicked and went to the emergency room. They gave me an ekg and sent me on my way. The only thing the could say the numbness was from was of course that old stand by ..anxiety. I told the guy I wasn't anxious until after I found my arm was numb. Then he said i probably slept on it wrong. Anyway, it just seems to get worse, i get soooooo weak, I feel like I'm dieing..sorry but i don't know how else to put it. ONe day I woke up and I could hardly move my muscles to walk, and speaking words were an effort. I noticed I feel a perculiar pressure in my upper chest and throat, when I have the breathing problems.NOw my legs and arms take turns getting numb. Also it feels like if a band was strapped around them sometimes. I had noticed that my blood pressure although it's not technically low. adverage105-65 IT can get lower but often stays right at the borderline of normal. So the doctors say that's good. But then I noticed a lot of the symptoms i have are symptoms of low blood pressure.Also my sodium level was low, and I eat a ton of salt. So I decided to do a little testing of my own. I started taking my bp lying, sitting and standing. I noticed a drop in pressure as I went from lying to standing. Then I also have a rapid heart beat. Anywhere from 80-95.again it's not as bad as some people but still. I noticed that it would go from 82 - to 127 within 10 mins. of going from lying to standing. Also I noticed all of the symptoms I had just kept worsening as I stood. First my legs had great pressure, then my chest , then the breathing got hard, dizzyness and faintness came in towards the end, & my fingers started to get numb. Oh i also get nausea all the time, wrecks my appitite, I can hardly drive anymore. So I'm wondering does any of this sound familiar to anyone here. From what i was feeling lately i thought it might be neurological, since I also have restless leg syndrome, and wake up gasping for air sometimes..which i heard could be central sleep apnea. Sorry if any of this is confusing but I'm also not thinking clearly sometimes. It's just really hard to funtion these days. It seems that it may be something to do with the blood pressure but I can't get a doctor to help me, and i don't know what to do. I'm not usually like this. Any help appreciated.

Sue

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First of all, I have a friend with fibro and she is having much difficulty with shortness of breath. She found out that sometimes fibromylagia causes this. She had had a complete workup as well to try and figure this symptom out, and the drs. could not.

Also, I can relate to the being so weak that you feel like you're dying. It feels like a really scary attack to me. I do have a diagnosis of POTS. But my take on it is that my autonomic nervous system is out of whack and consequently many different body systems can be affected at different times. I went to an endocrinologist about my extreme fatigue and "attacks" of feeling like I'm dying. To make a long story short, he did an Insulin Tolerance Test on me and found that my adrenals, though functioning, react poorly to stress (in the case of the test, the stress is extremely low blood sugar). He tried me on supplemental adrenal hormone. (Two other POTS patients of his had improvement with this treatment.) Unfortunately, I could not continue to take the hormone due to the severe gastrointestinal symptoms it caused in me. If I were you, I would consider trying to find some underlying causes to your symptoms realizing that if your ANS is out of whack, almost any system can be affected. Maybe you would end of being a candidate for adrenal hormone and it could help you? Do you have a cardiologist or neurologist who is well versed in POTS at this time? Maybe you could find one in your area? That is a start. I wish you the best and hope you can find someone who can begin helping you with your symptoms.

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HI, Thanks for the reply. I think the breathing has something to do with the blood pressure/heart rate because when i was testing my blood pressure standing, the longer i stood the higher my heart rate went and the more my symptoms worsened. I found i couldn't stand longer than 10 minutes because I got so sick and couldn't breathe. I've had tests to rule out Lupus,Thyroid,Lyme disease, and a few others I don't even remember.Unfortunately I don't know anyone who could help me. I just heard about POTS for the first time last night.I've been going to the docs with these symptoms for months, and they haven't been any help. Whenever i mention something I read on the internet that relates to me they act like i'm stupid for bringing it up. It really angers me, because i am in no way a Hypocondriact, I'm pretty honest with myself, and know when i'm sick. I just wish the doctors would trust that.I'm amazed by the doc's some people have. They perform tests my docs won't even consider. I always have to plead my case when I go to the docs. Then finally they might give in and try something. It really adds to the stress of being sick. It's like they think these are minor things that are bothering me. I am supposed to see a neurologist but the earliest I can get an appointment is September. In the meantime i have to suffer with this. If I knew of a good doctor that knew about POTS I would pay out of my pocket to see them. I'm in NJ if anyone knows of a good doctor. I do see an endo..once in a while because although my thyroid tests are normal I do have a goiter.So he likes to check that to make sure it's not growing, plus he's treated me for the hypoglycemia. I could ask him for the Insulin resistance test if the GP won't give it to me. Sorry for the long post but I can't help venting about the docs I've seen. How did you find out you have POTS?

Sue

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Hello Sue, welcome to the board. You and I share the fibro and CFS dx's...I also have POTS/NMH (neurally mediated hypotension, which is another name for NCS, neuro cardiogenic syncope). In addition, I have asthma.

The numbness you describe could be any of a number of things, ranging from symptoms of cfs, autonomic dysfunction, ms, back problems, to something as simple as an irritated nerve from sleeping in a bad position (ER doc may have not been wrong, even if he/she didn't say those words out of a good differential diagnosis). You probably need to find a doctor who is willing to take your issues seriously and sift through the issues--sounds like your current team has lost that ability.

You can find resources that might lead you to a more open minded doctor in several locations:

on DINET (the main site that hosts this forum):

http://www.dinet.org/physicians.htm

on NDRF, another dysauthomia site on the web:

http://www.ndrf.org/physicia.htm

and on the Co-Cure website, a CFS website:

http://www.co-cure.org/Good-Doc.htm

Hope you find your answers. Nina :wub:

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Sue,

Your symptoms sound very much like mine. Although many people here struggle with weakness and shortness of breath, those are my worst symptoms, first and foremost. I haven't breathed normally since developing POTS (but I still have hope that I will soon!) eight months ago and have lost so much weight and especially muscle mass that I am literally down to skin and bones. I was told by my doc that the constant release of excess adrenaline just makes you burn off everything at a fast rate. Have you also had weight loss?

Did you have an event that triggered your illness -- maybe a viral infection, a pregnancy or something? My POTS came just days after delivering my first child. This seems to be common. Others here developed POTS after an infection, and yet others just got it out of the blue.

There is good chance for recovery. Take very good care of yourself (eat nutritious and balanced frequent meals, drink plenty of water, etc.) and try your best to exercise, even if it's a walk for 15 minutes a day. Exercise helps you burn off stress hormones like adrenaline and helps prevent more muscle weakness. You should also see an autonomic specialist -- or a good cardiologist or neurologist for a proper diagnosis.

Good luck,

Amy

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I only have time now for a quick reply, but I just wanted to tell you that I've been diagnosed with POTS and I too have the numbness in my hands and arms during the night--and I'm NOT sleeping funny, lying on them, etc. Sometimes they'll just go "dead" -- and the feeling (or lack thereof) will wake me up. It's not the same feeling as a hand "falling asleep" during the day, with tingles etc. It's pure numbness--same as you describe. I do believe it's a symptom of POTS; I've shared it with my cardiologist, neurologist--people are rather nonplussed--perhaps because it's rather benign. Very weird, very scary ... but not in itself dangerous. I have other symptoms you describe as well (e.g., shortness of breath etc--my heartrate is much much higher than yours; I don't know my bp) and many many others on this board suffer these as well. I recommend you read past posts on this board--go beyond the last thirty days or whatever your default setting is--there's great information and support available to you here. Also read up on POTS on the home page, what helps and what to avoid, and check out the NDRF.org site as well. You're not dying; in the words of John Kerry and all last night, hope is on the way! Speed the day by drinking 2.5 liters of water today, eat a ton of salt (3-5 grams--salt tablets may help you with that), and get some 30-40 compression hose at a medical supply store. I hope you can find a new doctor who knows about POTS treatments soon! I think others here live out East and can help with that.

Best to you,

merrill

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All good suggestions above! Sometimes it can be difficult to differentiate between CFS, Fibro, and POTS since so many of the symptoms overlap. The first thing I'd do is check out the links given above and see if you can find a specialist in your area. I will say, the very first symptom that showed itself for me was waking during the night gasping for air as well- but fortunately I rarely have that problem anymore. Shortness of breath is common when the lungs feel as though they aren't receiving enough oxygen when the body can't properly force blood upwards.

I wish you luck in your search for answers, and let us know what comes of it :wub:

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Welcome Friday, I have been suffering form Fibro for nearly 10 years. I was Dx'ed with OH(orthostatic hypotension) in May of 2001. Just in the last few weeks has my Cardio made the admittence that it may be POTS. I also have breating trouble. I know now that even in high school I had trouble running that something was up then. I had a lot of pain at that time, but it wasn't until after my son was born that I was Dx'ed with fibro. In March of 2001 I had a terrible bout with first viral pluersy(sp?) and then a blood infection that effected my brain for about 2 weeks, I don't remember much, but I do know that about 2 weeks later I couldn't move around the house without blacking out as much as 15 to 20 times a day. After 2 weeks of that, I was sent for my first tilt table test(TTT). And boom, OH! As to your numbness, been there, done that. I wake up always with numbness, and I know I don't "lay funny" I only sleep upright on my back. A good hunk of you symptoms sound just like mine. Nausea, brain"fog", weakness and most the others are a daily, weekly, etc. type thing. I agree with the others, start with the TTT and go from there. Good Luck Blackwolf

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Thanks for all the help and support. It sounds funny but it makes me feel good to know some of you have experienced the numbness and breathing problems. I have been reading some of the links you sent. One of the docotrs listed. Dr. Podell in nj, is supposed to be an expert in CFS, I guess he would know about POTS, or any about the other things you guys mentioned. I read that a lot of people with CFS also have POTS. Some people believe that that might be causing some of thier CFS symptoms. It makes sence, It seems all these things are connected that have similar symptoms. I'm glad my pulse isn't as high as some of you. I don't knw how i could take it. I can barely climb the stairs without my heart wanting to jump out of my chest. I had to walk up one at a time last time i went to the docs, and even then I had to stop and rest...while my 69 year old MOM stood and waited for me. I told the doc but he didn't think anything of it. Okay I won't go into "doc ranting " mode. The thing about the pulse is, it is a bit high for normal and then it goes up at least 30 bpms when i stand for a few minutes. And then the symptoms worsen.That's what I read POTS does so I thought it was worth looking into. The tilt table test is definately worth doing. I know my bp drops when I stand too. To answer someones question I haven't lost weight. I imagine some other stuff i have going on might be keeping it on cause i really don't eat much. As for trauma or illness. i haven' had a physical trauma preceding this, but my brother had a heart attack and died in front of me 2 years ago. That would count for emotional trauma. Other than that , the only illness I had was last year when it rained constantly through the whole spring. I was sick for months with a sinus infection that wouldn't go away. That' s all i can think of. Well, Hopefully I can get an apointment with the nj CFS doc soon. I don't have the money. I'm on SSI ..but I'll live on nothing for the month if i have to. In the meantime, I'll try to load up on the salt and water as some of you suggested. Thanks so much

Sue

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Guest veryblue

funny you mentioned that you had a sinus infection preceding this...I did too...no other possible cause other than that! I still have my sinus infection and it wont freaking go away! I've had it for about a year now and wonder if this caused all of this then maybe its making it worse as it goes along. Hopefully I can get rid of it and then my POTS symptoms will go away! Do you have a family history of POTS like symptoms?

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I also had a sinus infection at the time of my diagnosis, which showed up in the initial MRI. I was given antibitoics and haven't had any problems since, but I think it's interesting that we all had one during that time. My doc seemed to think mine had been there for a long, long time prior to that as well.

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No, I don't think I have a family history of anything like this. At least not to this degree. I do have a family history of sinus problems though.(:mellow: Now that I think of it, my dad has Nueropathy because of his Diabetes. I know that's related to the nervous system.

Sue

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Sue, I've seen Dr. Podell, and yes, he does know about POTS...and also is knowledgeable about CFS/CFIDS. The reason I didn't continue with him is that he didn't accept any insurance. My first visit cost 300$, and then follow ups were anything from 150$ and up. I think I saw him 5 or 6 times--my insurance reimbursed me for some of the costs, but only a small portion. I would consider seeing him again if I needed to in the future.

Nina

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Dear Sue, I also live in New Jersey and have not found anyone particularly impressive. I called Dr. Podell's office and he does not take any insurance and is very expensive. I did get an accurate diagnosis from Mt. Sinai Hospital in New York City. A doctor Horacio Kaufmann (neurology department) has an autonomic testing lab in the Annenberg Building, 2nd floor). (He also has a fellow in training in the Autonomic Disorders Research and Treatment Program) He is not the most personable person I have met but Dr. Nahm, the fellow, was helpful. I don't think any physician in NJ really is interested in this condition. The phone is Manhattan is 212-241-7315. They did accept my insurance. I hope you find some answers soon. I think this state is one of the worst for running you around when they don't find a simple explanation for a medical condition and they're not very nice about it. Unfortunately for me the suggestions they made have only helped a little.

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Fellow jersey girls,

Hi. Thanks for the info on your experience with Dr. Podell. I'm glad to know he knows about POTS. I have seen the costs listed on his website. I'm on Medicaid, so most private doctors don't accept that insurance.:(I'm at the point where I feel it's something I need to do. I've been to so many doctors that know nothing about anything I have.

I really don't have the money. I get 600.00 bucks a month from SSI. 200.00 goes to car bills so that leaves me 400.00 to deal with. Luckily I don't have to pay rent or for much food because I live with my folks. The thing is, I can never go out because I am too sick, so I don't really have to spend money on much. I can do without hair die, makeup and such..who am I going to impress at this point. Long story short, I sent in an application to the office. I know he's really the only so called expert in cfs in NJ that I've found. And i do like the fact that he's involved in research. I also like the fact that I don't have to inform him about CFS, because most of the doctors I see have no clue.I'm not expecting a mircle cure, I just hope to have enough improvement to be able to have more of a life than sitting in bed. I don't know about how long I can keep seeing him but I'll have to play it by ear. You are right this state is terrible when they don't find a simple explaination to a medical problem! This past year has really opened my eyes to that. It just makes more stress on the patient , the way they treat you. All I'm doing is making myself sicker by dealing with these unreasonable people.

Hopefully I can at least find a little improvement . I had thought of going to other states, but I don't think I can because of the fact that my insurance comes from the state.

Well, thanks again.

Sue

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Sue, there are other doctors in that area of NJ that treat CFS and also know what autonomic dysfunction is--and take insurance.

Michael Gutkin, MD -- Renal and Hypertension

on staff at St. Barnabas and private practice down the street

I can't find his number/address, but I believe the office was in Short Hills--I used the white pages online directory to find these, which may or may not be correct:

Gutkin Michael MD

22 Old Short Hills Rd Ste 212

Livingston, NJ 07039-5605

Phone: (973) 994-4550

Business Types: Physicians & Surgeons-M.D.

and

Gutkin Michael MD

349 E Northfield Rd Ste 202

Livingston, NJ 07039-4806

Phone: (973) 597-1107

Business Types: Physicians & Surgeons-M.D.

Dr. Natelson, UMDNJ-Newark

Neurosciences - Chronic Fatigue/Fibromyalgia Syndrome Center

Benjamin Natelson, MD, Director

Appointments: (973) 972-2550

I've never used Dr. Natelson, but I have a few friends who've done so. I used to see Dr. Gutkin--he's actually the one who sent me to Dr. Podell because Dr. G wanted another opinion. I liked Dr. Gutkin, but found his office staff to sometimes be difficult to deal with. Since I no longer live or work anywhere near there, I no longer see him (I'm closer to Philly).

Nina

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Natelson won't take insurance either and wants to be paid up front. He no longer has funding to see patients under his NIH grant. I don't know why New Jersey can't have autonomic specialists on staff at major medical centers. The NJ Department of Health keeps saying they wants patients to stay in New Jersey and not go to Philadelphia or New York. Well they're a lot of talk and no action. RWJUH and JFK just wants the patient to fit in a nice category and won't admit that they don't know everything.

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