Nauthiz

Once again things continue to go worse, i don't really know what to do anymore. It seems im not as hungry anymore and have trouble eating food in several ways, bad swallowing function, so much that i spit alot because of it, weird stomach sensitivities when eating. Because of this i am extremely underweight now, im 5'9 male at 119lbs !. I also have been experiencing headaches and spasming pulses in my body and minor skin infections and much more. I just feel like im wasting away and my doctor can't do crap to help me. Everyday seems worse than the last somehow its always getting worse no matter how hard i try to control it. I just want to go crazy. Im sorry if this post doesn't seem to have much meaning but i just really need to let out some steam.

Im trying too find what has helped people in the vitamin and supplement department.

Things that help somewhat

Whole food Multis give me a bit more energy(nature's way)

Probiotics have helped my stomach a bit(country life)

Elderberry lozenges for the throat pain(ricola)

Things that i haven't noticed any differences from:

Vitamin D

Fish Oil

Digestive Enzymes

Quercetin

its confusing. Ive read so many websites where the symptoms of CFS are reported as identical to what I suffer. I met a guy that had CFS and he reported the same symptoms as me but his tilt table test was totally negative for POTS. Confusing.

I think there are studies that suggest that 50-90% of CFS patients have POTS. Other studies say that most CFS patients have Neurally Mediated Hypotension as well.

A lot of Fibro patients also have POTS so maybe its as the person above said - many with CFS have POTs but not every POTs has CFS. (I dont seem to have a low immune system as an example, mine seems almost too good).

my immune system *****, do you do anything special!?

I looked up the symptoms of CFS and the symptoms match me identically it also says that Othorstatic intolerance is a symptom, is CFS and POTs directly related?

Here is from the website.

Primary Symptoms

As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it's not the kind of fatigue patients experience after a particularly busy day or week, after a sleepless night or after a stressful event. It's a severe, incapacitating fatigue that isn't improved by bed rest and that may be exacerbated by physical or mental activity. It's an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.

People with CFS function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational, personal, social or educational activities.

A CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms. These symptoms include:

* cognitive dysfunction, including impaired memory or concentration

* postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise

* unrefreshing sleep

* joint pain (without redness or swelling)

* persistent muscle pain

* headaches of a new type or severity

* tender cervical or axillary lymph nodes

* sore throat

Other Common Symptoms

In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include:

* irritable bowel, abdominal pain, nausea, diarrhea or bloating

* chills and night sweats

* brain fog

* chest pain

* shortness of breath

* chronic cough

* visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)

* allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise

* difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)

* psychological problems (depression, irritability, mood swings, anxiety, panic attacks)

* jaw pain

* weight loss or gain

Clinicians will need to consider whether such symptoms relate to a comorbid or an exclusionary condition; they should not be considered as part of CFS other than they can contribute to impaired functioning.

I have, and it hurts. But I really don't know why. It is usually my left also. Most stuff happens to me on the left. I hope it gets better soon.

Suzy

yeah my stuffs always on the left which is the most anxiety causing thanks to the old heart being over there, drives me nuts!

I just noticed this today as my arm has been a bit achey on and off last few days (left arm). Seems like all my problems lie on the left lately.(head aches). Anyways the wrist i noticed is very veiny and it its very engorged feeling when i press on it, compared to the other wrist where i dont feel any blood or vein its just hard like bone. Has anyone experienced this more visible engorged veins? Its kind of wierd not sure why it would be happening. Left wrist = engorged vein, right wrist = hard boney dont feel a vein.

Im sure most of you can agree with me here atleast for my GP. I went to him the other day complaining of headache, and he looked in my nose and ears(no neurological questions or exams). he said one ear looked inflamed(the one that didnt even hurt), and my nose looked inflamed. So he gave me anti biotics. The thing is i don't have a fever or runny nose or really any symptoms of a infection i just have a one sided head ache in the back crown of my head and a mild feeling of ear pain. But the ear that hurts he didnt see any inflammation?? Anyways i took the antibiotics for 4 days(although i missed a couple doses from falling asleep to early)and i feel no different.

So i call him back as he asked me to do if i didnt feel any better in 3 days, and he doesn't even talk to me, they just auto order me new antibiotic brand. I feel kind of ignored i mean what if it has nothing to do with an infection? He didn't even talk to me, its upsetting.

I also looked up the new antibiotic which has alot of side effects including irregular heart beat which i don't want to deal with considering i usually always get bad side effects.

I told him that in the mornings for months i sometimes have brown plegm only in the mornings so i might have a mild infection maybe??? But i don't think it has anything to do with these new headaches.

I think im going to just not going to take these new antibiotics and get a new doctor. Can anyone relate to this? i feel like i'm getting nowhere.

that is great to hear, i hope i can join you as feeling good soon as well!

Yes!!! Cranial osteopathy for me in a week for this.

You know it reminds me of? Night at the Roxbury! WHAT IS LOVE - BABY DONT HURT ME - NO MORE. (head bob)

lol i love that movie!

Initially they really couldnt get a standing bp reading because I simply could not stand, but the one time they did all I got was the systolic reading and it was 80.

These days when I test at home its usually anywhere between 130/85 to 100/70. Ive even checked it and it has been 140/90 - so it really seems to be all over the place.

I didnt get to see the results of my 24 hour holter bp reading, but my specialist did say he got some low readings. Also, the first time I saw him he took my reading laying down, then again standing and he did say that it did drop a little more than what it should for a normal person.

yeah the reason i asked is because from what i understand a drop in BP upon standing is a sign of other dysautonomia and a increase in BP in standing is related to POTs, i could be wrong though.

does your blood pressure drop on increase when standing?

i can relate when i lay down or sit down sometiems with the back of my head resting on the pillow or chair i can feel a shaking or rocky in my head due to pulse.

Has anyone experienced this strange sensation? I have a headache but also have this weak feeling neck on and off. It kind feels like you have weak neck muscles supporting the weight of your head. Like for example if i look up nad tilt my head backwards it feels like my head falls backwards without as much muscular support or effort. Feels almost like i am a boble head.

Has anyone experienced this , just really wierd. Sometimes i also get a "freeze" feeling in my neck for a split second.

This is something new for me but does anyone else experience this? I have been having join stiffness in my right wrist / fingers / forearm. It just feels like i need to use a bit more energy to move them, its mild but its def a stiff feeling. Anyone have remedies for this or is it a symptom of pots?

I have had a headache for the past 4 days that seems to wax and wayne but its always there and seems to be intensifying lately on the up portions. I went to the doctor day prior he gave me a quick run through looked up my nose and in my ears. He said my nose looked inflamed, and my opposing ear (inside) did also, the one that doesnt hurt strangely enough.... so he prescribed me augmentin which i am going to start later today.

I have no fever or any infection symptoms but he said its still infection, i also had green and brown plegm OCCASIOANLLY in the past months he said also is sign of infection. Headache all started after i noticed a weird bump like hematoma on my arm that appears to be slowly bruising over and hopefully healing.

Anyway i've noticed the times my headaches is the worse is after eating, it doesnt matter what i eat and i do not believe i have any intolerances to food and also have had negative gluten test.

Its the left/back side of my head and i feel the pain occasionally in my neck/ear/throat(neck pinching pain woke me up yesterday). Does anyone know why it would be so much worse after eating? I thought jaw muscles maybe at first but the pains all the way on the back of my head during these painful flare up after eating.

Originally dr said nothing to be worried about but i forgot to mention worsening after eating, anyone know why this is ?? im very confused what to think of my headache and weather or not to be worried about myself.

Any new symptom is not to be ignored. I could actually be an ear infection!

It sounds a lot like my headache though, unilateral, base of skull radiating up over and inside the ear and behind the eye. Benadryl helped mine for a while, but I had to take a lot of it (25mg every 4 hours.) Klonopin is controlling it now, it is still there, lurking, waiting for me to cough or bend over. I wish you luck, it can drive you insane. I hope you get some relief soon.

yeah im going to try resting, sounds similar. I have headaches similar to this before but not as bad. Im going to see if i can wait it out another day or two it goes away, just trying to avodi going to my GP as he usually does nothing and its 80 bucks out the window. Figuring out when to go to the doctor can be mind ravaging as it is . I just feel weak and terrible and sick, almost like i have a cold sick but i dont have one that i am aware of.

Im a bit worried and depressed last few days. It all started with a bump i noticed on my arm towards the armpit, it was red lump bump kind of like a blister or pimple but harder. I was fiddling with it kind of stupidly it and it turned into a small hematoma, big purple bump/bruise that worried me because it was real dark. So it freaked me about a bit. Over the last few days since this wierd bump ive gotten a TERRIBLE headache on the back left side of my head, one of the worst i have had ever. It seems to gradually get worse throughout the day each day and seems more minor in the mornings. It also hurts more when i open my mouth to yawn or swallow i feel a pain on the same side of the head. Its wierd too because before these last few days i was feeling best i had in long time!

I also have alot of brain fog/confusion, nausea(rare for me) today and feel very fatigued and just like garbage over all. The bump on my arm seems like it might be getting better maybe? But my headache is just driving me absolutely crazy. I've had headaches in these positions before that have come and gone but this ones worse i think. ( i always get them either left rear of head or right rear of head, upper or base of skull.) It just really hurts and hurts when i burp/swallow/yawn/talk etc. I also feel like its in my left ear???? Kind of like when you have a ear infection ache? its feel like that sometimes with a wetness feeling and dullness in the ear, and i found a sensitive spot or two on the side of my face/head. Is this just a bad migraine probably??

Should i be freaking out? I really can't afford hospitals or any thing like that anymore, what can i do to calm myself down or fix my headache, what should i look out for, or be concerned for?

I am also getting my TTT test in a week to hopefully get my official POTS diagnosis.

I thought I was just crazy! You can literally see my hearbeat in my stomach, and it makes things move when placed there (like the remote you mentioned). If my veins are so floppy and circulation so inefficient, how can this be?

have you lost any weight? I think mine could be party due to weight loss. But its wierd when this first started i didnt lose THAT much weight, and i noticed it. I asked a medic why my stomach pulse was visible, she said its normal. But it wasnt normal for me before..

I think that it may be due to my poor circulation I cannot keep my arms over my head. It would trigger a cascade of symptoms if I left my arms over my head but I just don't do that anymore.

The other question related is: what caused the poor circulation in the first place? Are my nerve fibers not working? Are my red blood cells carrying enough oxygen?

this is what i want to know how can i improve circulation and blood volume, and why is it impaired exactly?

I have the SAME symptoms!!! You should read my symptom list that was my first post. The pulsing/heartbeat internally is the most annoying. I feel it in my stomach or in my head the most often...and I can visually see it! If I Put the remote or something on my stomach, you can see it rocking back and forth, and sometimes if I close one eye and stare at something with the open one, I can see my head rocking up and down with my pulse! Have you found anything that makes this worse/better?

im still doing some research and new diets(Not to lose weight) etc. Its funny you should mention it being visible my girlfriend said she saw my pulse moving up and down in my temples for a moment than it went away.

i have the same burping problem!!! when i stand i start burping, when i eat i start burping!

do you have alot of nausea? is pots very disabling for you?

i have mild nausea SOMETIMES. Lately symptoms have been like this, and it really does screw up any normal life funciton it seems.

-Excessive burping, worsens on standing or starts from standing, feel like tons of air trapped or gas even, lots of painful pressure. Usually when this happens i have or feel like im having palpitations.

-Headache, usually on one side or another

-Flushing in limbs occasionally, and limb pain, aches and cramps

-racing heart sometimes upon standing(that i can physically notice)

-tingling, twitching, pulsing in limbs or head or random spots on body

-Standard Chest pain of course

-Shortness of breath sometimes, not as much lately.

Can you relate to any of this?

Does poor circulation add to flare ups? It seems like it feels to me anyway i have poor circulation and maybe blood volume. An example of this would be lift my arm up at times i will feel it warm up and get flush like blood flushing in or out of it. Also when after i eat i start burping like crazy, maybe due to blood pooling? Wierd enough though i also start burping sometimes when i stand up to walk around??? I was thinking about drinking a few glasses of OJ a day also as its said to improve circulation.

Yesterday was the first day in a long time I felt like running errands & accomplished a lot but today I'm exhausted. Late this afternoon I started getting a severe sore throat, one that gargling & lozenges don't touch. I must have picked up a viral inf. I have bad reaction to most meds & know that a lot of you have that problem also. I would appreciate any suggestions of OTC meds that have helped you. My PCP is out of the office until next Tue. I envy people that can take meds when they get sick. Thanks for your help.

Various mushrooms have strong supportive evidence on the immune system, beta-glucans you can check out in pill form. Also Orange juice, vitamin C, Tea's, and a humidifier all help.

Could the pop in the chest be a rib?

Where do you get tingling after meals?

not sure pop seems to be random but it feels crackyish like it could be a rib or a gas bubble or something??? I get tingling in limbs or face sometimes.

Has anyone felt a pop feeling in their chest? It usually just random happens and its once, its happend to me twice over like a few months. Its very strange just like POP in the heart area that feels really messed up but then i seem to be ok or feel little sluggish worse.

I also have been experiencing tingling in body after eating sometimes, anyone know why this could bE?