PLZ HELP!!!!

[kiwi3221]

Hi! I have seen a lot of specialists but no one can find out what's wrong. I have been to a psychologist and there is nothing wrong there and I KNOW something is very wrong! I cannot work and spend most of my day in bed. As I've gotten older more symptoms have appeared and I simply feel like I am 85 when I'm only 35 and have felt this way for some time now. Here are a lot of my symptoms....I may be missing some but this is what i can think of off the top of my head. Not sure what is related and what isn't so i am listing as much as possible. I know something is wrong with me....and one of my children has some of these symptoms as well.....if anyone has ANY ideas or help PLZ offer it. I no longer know what to do... :( by the way......I used to be extremely active and positive and now I am not able to be active and am more of a glass half empty girl now...i think just from being frustrated
-bouts of VERY severe diahrea
-swollen lymph nodes in the upper part of my body consistanly for a long time now (mth's almost a year for sure now)
-extreme fatigue every day (when i am not fatigued if I try to do the normal stuff people do like groceries, shopping etc.....if I do what my body considers too much which is less than most people do regularly then I get flushed and feel crappy
-I have a fast heart rate and heart palpatations (and I have slightly low blood pressure and the doctor says this could all be caused my my blood being dehydrated basically as i am not retaining enough salt and water however i have consistantly tried to make an effort to drink a ton and take in salt with no change)
-I get dizzy spells, especially triggered by lack of sleep
-I tend to be irritable
-I have become anaphelactic to the freezing you get at the dentist for no known reason.
-two of my relatives (one being my dad) have auto immune disorders and I suspect that's what this is but have no clue...
-in my blood work a couple levels are elevated such as inflamation etc....
have been disgnosed with severe irritable bowel syndrome
-am lactose intolerant or allergic something to that effect...don't tolerate milk etc....
-I NEVER feel well....always feel crappy. just general unwell feeling all the time.
-I am very tiny always have been 100 lbs
-sometimes have shortness of breath but not consistantly
if I exercise my heart rate rises above the safe zone even just from fast walking therefore i am unable to do much in way of activity or exercise.
-headaches (fairly severe and nearly everyday)

PLEASE ANYONE HAVE ANY INFO???????

[LivingInHope]

I too have been diagnosed with P.O.T.S., and yes when you have dysautonomia problems, you can have many other symptoms related to other parts of the autonomic nervous system.  (I was diagnosed with I.B.S. long before being diagnosed P.O.T.S.)  But when you mentioned you were tiny, it also made me think of wondering if they tested your thyroid to look for a problem related to it (TSH, T3 and T4)?
I saw somebody brought up iron- have you gotten that tested, not just CBC, but iron and ferritin and T.I.B.C.?  Because low iron, even if your CBC is normal, can make tachycardia symptoms even worse (experience in the past).

[evo123]

Link for information on treatment:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Treatments/show/171?cid=196

Link to FAQ on the Dysautonomia health pages:

http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction-FAQ/show/181?cid=196

Link to Dysautonomia health page index:

http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction--Dysautonomia-Index-Page/show/857?cid=196

I hope this info helps xx Good luck

[evo123]

I am so glad this information has helped you x I really am x

I know how valuable a correct diagnosis can be.  I was hospitalized for 7 weeks with no diagnosis, I was close to giving up and then I had a tilt table test!! My dr's were still not convinced at that time but all other tests have ruled out everything else so far.

Join the Dysautonomia (autonomic dysfunction) community they will help you and support you and will help answer many questions you may have.  I am still learning about this myself and there is a lot to learn.  

Not much is known about POTS and many medical professionals have never even heard of it and I think that is half of the battle.  Treatment is by trial and error really but should help you lots so the sooner they try you on some the better.  I will post a link to a list of medications that can be used.

I am so glad you have read up about this and can actually put your symptoms to something.  I cannot believe your cardiologist has not linked any of your symptoms to this, he/she should have at least gave you some info.

Kind Regards xx

[kiwi3221]

OH MY GOODNESS!!!!!!!!!!!! I have most if not all of this! When the cardiologist explained it he only told me about the cardio effects!!!!!!!!!!! THANK YOU THANK YOU THANK YOU!!!!!!!!!!!!I see my doctor on monday i will be taking info on this and showing him but it's me to a t........THANK YOU!!!!!!!!!!!!!1 I was so tired of peop;e telling me I waqs crazy....you have no idea what this means to me. I cried when I read it and am more than thankful.

[evo123]

It would help you greatly if you read about POTS and the symptoms it causes, it would explain a lot of things you are experiencing.  

Are you on any treatment for your POTS, there are many different meds that can be tried to lesson symptoms that you are experiencing.  There is a detailed list in the Dysautonomia health pages.  

POTS can be a primary condition or secondary caused by another illness, on the website link I gave you in the previous post there is a section listing similar conditions and conditions that can cause POTS symptoms.  

I hope this helps.

[kiwi3221]

I was diagnosed with POTS as well yes! But don't know a ton about it.

[evo123]

I'm sorry to hear you are experiencing so many symptoms.  

Do your symptoms become worse on standing?  Post your question on the Dysautonomia (autonomic dysfunction) community forum.  See if any posts there sound familiar.  Have you ever had a tilt table test?  

Looking at another possibility have you had a full hormone panel done.  Maybe post your question on the Adrenal insufficiency forum.  

I to have had many symptoms and all tests came back normal, my dr's were at a loss on what was wrong with me.  They found an adrenal tumour, but this seems to be non functioning, and discovered I had coeliac disease.  I had a tilt table test and had an elevated heart beat on standing, and was dx with Postural Orthostatic Tachycardia Syndrome (POTS).  Many of the symptoms you have mentioned are experienced with POTS, the link below will give you some info on this condition:

www.dinet.org

You may not have these but it is worth looking at this to see if any of it relates to you.  I hope you find some answers soon x

[kiwi3221]

they see symptoms of but nothing to suggest what it is or if it's that. he said I may need to get sicker before they can figure it out...not sure I like that idea as i am pretty much bed riddenmost days now! I have had these symptoms for years they think it may have piggy backed on a virus as I have been sick since that day but with things getting progressively worse as I go. And i got c-diff two years ago and nearly died and they don't know how or where i got it from.....wasn't fun in the least!!!!!!!!!!!!!! And before someone asks....have NEVER tried drugs. Have travelled to the states a couple times but never anywhere else and I don't drink. so can't be anything related to these things.

[daney928]

hmmm then no clue then, autoimmune is quite possible but im sure doctors would have figured that out by now.

[kiwi3221]

no I am married and only had sex with my husband. Have four children and imagine they'd have found that and that it would have affected my husband before now. Had two friends with aids but no..nothing sexual.

[daney928]

Hmmm, the fatigue could be cause by lack of iron, have you ever been sexually active with multiple partners but I don't mean to scare you but that almost sounds like certain latent stages of HIV.