Mystery Sickness For 17 Years Now (sorry For The Long Post)

[KushielsTart]

I can't tell you all how happy I am to have come across this website; I'm starting to believe that you guys may have finally provided a diagnosis of some kind for me. I have been sick since I was 15 years old, and it seems like each year I get progressively worse. I am 32 now. Like many of you I have seen what seems like every specialist under the sun, and have had what seems like hundreds of tests run.

Every time I switched insurance companies or moved I would do a whole new round of doctors and tests hoping for answers. I was diagnosed about 4 years ago with Fibromyalgia, but my current pain management doctor is convinced that I don't have it. She says that although I have chronic pain and myofascial tenderness, I don't have enough of the wide spread tenderness. So she started me on yet another round of doctors. This is the list that I take to everyone of symptoms:

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-deep radiating pain from both hip joints (primarily right)

-pinching and catching in both hips (primarily right)

-diagnosis of bursitis in both hips, hypermobility in hips and lesser degree in knees

-occasional pain in right knee, mostly when hips hurt bad, but it also occasionally feels like I twisted it

-frequent knots along shoulder blades with neck pain and headaches

-lower back pain generally at same time hips hurt bad

-yearly sinus infections (tested negative for all allergens and CAT scan shows no structural problems)

-sensitive skin prone to rashes and hives

-multiple chemical sensitivity: perfumes, lotions, air fresheners, cleansers cause bad headache, nausea, rashes, “brain fog”, and I can taste them in the air

-heightened senses; 20/10 vision, sensitive to loud or high pitched noises, sensitive smell

-always cold, especially hands and feet

-difficulty finding certain words or losing track of train of thought mid sentence (usually when it's been a painful day)

-difficulty with math

-chronic fatigue (in my opinion, the most debilitating symptom)

-Feeling of extreme distress/exhaustion/panic in the morning when getting out of bed

-IBS like symptoms

-weak pelvic floor/bladder muscles

-chronic insomnia

-square feet, low instep, turned up strangely shaped toenails

-used to have anxiety and panic attacks, have them less strongly, but still there. Particularly at night trying to go to sleep, and first thing in the morning when getting up

-pain and dryness during intercourse

-clumsiness, difficult to walk in a straight line

-Multiple moles

- extremely sensitive to sugar and caffeine

-recent increased gag reflex, and occasionally difficulty swallowing at night – i.e. my retainers cause these reactions in putting in and taking out, and it seems like too much saliva builds up when I have them in laying down.

- very low tolerance to exercise – my body feels like it doesn’t have the energy to continue. Climbing stairs has become very difficult; one flight feels like 10.

-Propensity to lightheaded and dizzy spells w/ cold sweat and being close to passing out with certain stressful/ painful situations. i.e, dentist, IV being put in, bad menstrual cramps. Also feel a strong need to urinate when in pain.

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So I had not gotten anything from anyone. Then on Saturday night, I got a very bad IBS episode after eating Chinese food, which I am guessing must have had MSG in it. About 45 minutes after eating, my neck and shoulders started hurting, then my head started throbbing. Then I started to feel queasy, then dizzy. I had had a bad bout of diarrhea and came pretty close to blacking out. I was sweating so bad I was dripping, and I was freezing cold.

After I started feeling a little better I started poking around on line and came across the vasovagal syncope. It all sounded incredibly familiar, and reading about that led me to POTS and dysautonomia. Everything I'm reading seems to match up with my own experience, although I have a lot less dizziness and fainting than many of you. I wonder why it never occurred to me to check blood pressure or worry about my heart. I also wonder why it never occurred to any of my dozens of doctors. When I've had anxiety and a racing heart, I always assumed that it must be related to the pain and tension I was experiencing, but I never thought about the possibility of it being the other way around.

So after reading all weekend I called my rheumatologist on Monday, and he said that it seemed feasible, so recommended me to a cardio. I'm very lucky, as they were able to get me in this Monday. Yesterday I went and bought a heart monitor and have been randomly taking measurements and keeping a log. I don't seem to have a whole lot of fluctuation for the most part, but there have been some big anomalies. Most notably was upon waking this morning, laying down at 105/62 w/ pulse 68, to standing 145/123 100 pulse. Also this afternoon when I started feeling really crappy I measured 139/126 78 pulse as compared to 102/69 78 pulse about an hour earlier (both sitting).

I really appreciate all of the information I am finding here; I have been reading all of your posts and learning as much as I can. At the very least if I am on the wrong track I can be an advocate for you all.

[Maisie87]

Kushiels!

weeelllllcoommmmmeeee! I'm so glad you found this forum.

17 years wow- I can't imagine your frusteration. My journey to a diagnosis was only two years and that was agony..

I'm glad you have an appointment with a cardiologist- damand a tilt table test!! make sure you get one.

Like many of us with dysautonomia, I was told my racing heart, IBS, dizziness, cold sweats, chills, insomnia, confusion, exhaustion, neck and back pain, headaches... (i could keep going) was all due to anxiety! no way.. Good for you for being persistant about finding answers. Most of us on this forum, from what I've read, went through an average of several months (some several years) of doctor hopping before reaching a diagnosis.

Pain isn't one of my main symptoms like yours- I'm not a doctor at all, and don't know what that points too. But so many of your other symptoms sound so familiar to me.

I'm so sorry you've been dealing with this for so long. Hopefully things are about to change for you- answers and peace of mind.

This forum has so many wonderful and compassionate people, it has served as daily validation and companionship for me. I hope we can do the same for you!

feel better*

Maisie

[sue1234]

Welcome!

First I would like to mention that getting tested for endocrine things might be good to rule in/out certain things that share symptoms to dysautonomia.

If I were going to the doctor with your symptoms, I would ask to be tested for hyperparathyroid(serum and urine calcium levels, PTH) and a pheochromocytoma(serum and urine catecholamine levels). Hyperpara. can cause lots of muscle and joint pain, headaches, insomnia. Pheochromocytoma can cause headache, sweating, and a host of other symptoms. Both of these can cause erratic b/p and anxiety. Read up on them and see if they sound possible to you.

[runningshoe]

Check for lyme disease too....

[KushielsTart]

Thank you both, I will askh if those things were tested for when my last few sets of labs were run.

[Mrs. Burschman]

Welcome! Glad you found us, sorry you had the need. Yada, yada.

Sounds like you fit in with us!

Amy

[HopeSprings]

I hope you find your answer. I went undiagnosed for over ten years. I am still on the hunt, as POTS doesn't explain everything. I know how incredibly frustrating it is to be experiencing all of this and not know why, seeing Dr. after Dr. and getting no answers. I have a lot of the same symptoms you described, but am curious for more information on one that you mentioned. Can you describe the chemical sensitivity more? This is one of my most challenging symptoms, as it is so hard to avoid chemicals in everyday life. You said you could taste them -- the same thing happens to me. If I smell someones perfume, it feels like it enters my bloodstream, it gets in my mouth, up my nose, in my head, makes me lose cognitive ability, makes my ears clog up and can take HOURS, if not a day- to get rid of. Is it like this for you? Does alcohol bother you? If I take even a sip, it sends my symptoms out of control. Thanks.

[KushielsTart]

Naomi- It is the same for me. It was one of the first symptoms I remember getting at around 14 or 15, even before the pain started. Most synthetic smells bother me, but anything with a floral smell of any kind is the worst. Its funny - I can't stand the smell of perfume, but I can tell when someone is wearing certain scents because I've learned to identify the worst offenders. I can't always taste them, but if someone has put it on strongly, I can taste it in the air. Especially if I have to continually move through the same space that they have. First starts the headache, then the neck ache. I get the pressure behind the ears and eyes as well. I get nauseous, and when it's really strong I have a very hard time thinking. Reasoning is a nightmare, and my language skills devolve. It's like a super case of brain fog. And usually if its in the air strongly enough for me to taste it, I also break out in hived and a general flushed rash on my chest and face. The same goes for scented candles and air fresheners. What is really bizarre is that most men's colognes don't bother me, and neither do most food or fruit scented candles. It leads me to think that its maybe the chemicals that are used to imitate floral smells that really get to me. I have had to take quite a few sick days from either bosses that did not sympathize with the seriousness of it; or even with nice bosses, there are always co-workers who think you are passing judgement on their choice of scent and so refuse to stop wearing it. And I could go on for hours about the ridiculousness of people that use 10 different products every day each with a strong competing smell. Isn't it miserable to be so sensitive? At least lots of detergent makers and such are starting to produce scent and dye free products. I used to have to smell every bottle on the shelf to see what could go home.

You are the first person I've met that has the same responses I do. I've met a lot of people who act sympathetic and say they get headaches too, but we both know that it's far beyond that. Are there some kinds of scents that bother you worse than others as well?

I've only gotten sensitive to alchol in the two or three years. It used to be nothing, and then all of the sudden it got horrible. If I drink any hard liquor at all, I will wake up a couple of hours after going to bed and be wide awake with a racing pulse and a tight chest. Taking sleep medications will let me sleep for a few more hours, but nothing like a normal nights sleep. Then for the next couple of days my stomach will kill me as if I had gone on a bender, and I will be in a constant state of anxiety, feeling like I must have done something wrong, but I can't remember what it was. Luckily a single glass of wine or two or three beers isn't enough to do it to me, which is fine. The whole thing *****, but I really love a amber beer or a good Shiraz, so at least I still get small indulgences. :-) Back in July I went out with an old friend from high school and had 4 Amaretto's on the rocks. Not exactly a strong alcohol, right? But I was miserable for weeks. For about 4-5 days I was nauseous and couldn't eat more than a few bites at any given point. Yet when I had an EGD done two weeks later, positive I had to have an ulcer or something, they said it was only mild gastritis. What are your symptoms like if you drink?

[ramakentesh]

The pain you describe doesnt sound like POTS - it actually sounds like Ankylosing Spondylitis.

[firewatcher]

Welcome to our dysautonomic community!

I get just about everything you mentioned but the hip pain, mine is in my hands....usually from overwork. My physical therapist believes it is tendinosis (micro-tears in the tendons that just don't heal) since I have loose joints and the pain is atypical for arthritis. I also can taste perfume and fragrance, some chemicals (like gasoline or lacquer thinner) don't bother me at all, but get perfume within 10 feet and I am sneezing and swelling like crazy! That combined with frequent sinus infections (and several other factors) made my dx of vasomotor rhinitis. I wish you luck in finding good doctors! I hope we can support you in your search and that it is something "curable!"

[Guest tearose]

Welcome!

When we arrive at a new doctor consult with a list of symptoms and long history of many other doctor consults...we already have a challenge UNLESS we have a doctor enlightened on the Autonomic Nervous System.

Keep looking for answers, you are getting closer.

tearose

[HopeSprings]

The pain you describe doesnt sound like POTS - it actually sounds like Ankylosing Spondylitis.

I have wondered if I have this. What are the main symptoms?

[extern14]

We all know your frustration at not being able to find what is wrong and how to fix it. My journey was for three years and we are still learning about what I do have and what medications to take. I know being patient is something that you have already but continue to be patient. It sounds like you are on the right track. The heart rate jumping is a classic sign of POTS but as for the pain you have, I'm not sure. I know I don't have that sort of pain but I do have vision problems. Like most people with POTS, there is usually a few other things that are complicating the POTS or making it worse. So keep plugging away. Hopefully the cardiologist will give you some answers! Good luck and we are always here for you!

[ramakentesh]

Ive got it and ive met a couple of other POTSies with it as well but Dr Grubb said it was rare when I emailed him about it.

In males its mainly pain in the lower back and knees and shoulders - in females its usually more diffuse. Check it out. Its a pretty easy blood test to get diagnosed in most cases.