It's been years.. why am I still sick?

[kathryn]

Hello everyone.. I've been offline for ages as I've been trying to get my life under control. Of course that has not worked.

I'm still SO sick. Hopefully I'll bump into someone who remembers me, but if not here's the background info. I'm sorry it's SO long but I'm sure you can understand I feel utterly lost anymore and I have really no one to talk to...

When I was 13 I had mononucleosis and further bloodwork showed the presence of epsteen bar virus and parvovirus b19... etc etc... so basically a couple nasty virus's that after I originally got sick all kind of kicked me while I was down. Well, ever since then I have not been the same. I used to play field hockey and could run around outside all afternoon and still want to play a game of basketball after dinner. I was a fairly DECENT student... I never really liked school that much but after I got sick it was hell. I used to read tons of novels and just loved to read and write. After I got sick I started missing alot of school and people started messing with me. That is a whole 'nother story though, but the massive bullying did lead me to become extremely shy and nervous which doesn't help matters either.

Anyways, so since I was 13 I've been progressively getting worse. My main symptoms have been all over body pain, extreme fatigue, headaches, joint problems and the like. I seem to go through periods where this gets worse, after stress or major events. I can't really explain it but I also have 'brain' problems.. I have no attention span, can't focus for the life of me and black out fairly often. I just tend to go off into my own little world. Sometimes I can just get very confused and I say things I don't mean- good and bad. So I just try to not talk all together which just makes me seem even weirder.

For the physical symptoms they have gotten alot worse. I've been previously diagnosed with fibromyalgia and also Raynauds. I've honestly got the doctors baffled though. My joints crack and grind.. you can hear my body creaking when I move. I have to actually crack my joints to release the 'pop' or else I get so stiff I can't move. This applies mostly to my hands, back, neck and jaw... but I have to crack my toes sometimes as well.

My joints also change colors... purples, blues, whites, red... etc... as well as the temp changes.. they can be cold as ice one minute and the next I feel like I'm on fire. I don't always actually 'feel' the temperature changes... I'll be handing someone something and they will be like WOW you are frozen/on fire!! Sometimes I feel it but not always.

More recently these symptoms seem to be leaving my joints and spreading to the rest of me. I've been bruising on my legs very easily and the bruises just come and go. There is a strange one on my knee that's been there for weeks now and won't leave. Other areas of my skin are changing colors and temperatures. My headaches are becoming worse and my fatigue is so bad recently I've been laying on the couch for hours. My sleep patterns are also getting weird again. For a while I was doing okay with going to bed and somewhat sleeping through the night. Now I am soo tired but still can't fall asleep or stay asleep.

Basically, I am exhausted. I'm so sick and tired of being sick and tired.

And I'm not even finished yet.

Besides all that, I have more problems. My stomach is constantly upset. I am either constipated or am vomiting... etc etc. It goes from one extreme to the other. I also have chest pains as well as specifically heart pains.. my heart 'flutters' sometimes or I feel like someone has just punched me in the chest. My ribs hurt... I don't even know how to explain that one. I also have tightness in my chest and sometimes I have some serious trouble breathing.. I feel like there is a weight on my chest and I gasp for air. People around me give me strange looks because I'm out of breath when I'm not even doing anything.

Sometimes I feel like I've just been stabbed in the gut.. Or in the back... just random jolting pains. I've also come to realize this is much more complicated then previously expected.. this has gone beyond 'not feeling well' to actually 'not being well'. I get random unexplained fevers and whatever the opposite of a fever would be. Sometimes it's only for a few hours and other times for days...

I go from being really hot to being really cold... Since it's winter now when I am bundled up from being outside and go run into the store for sometimes, that change of being in 30 degree weather to a nice warm store makes me nearly pass out. I have to remove my jacket right away and nearly strip in the store as I get so overheated so fast. But yet, other times I'll come in and I'm still as cold as I was outside.

I catch everything... I've had strept throat about 3 times so far this year. I get every stomach bug, every sniffle that goes around. I feel like I should be wearing a mask and gloves.

Okay, one last major complaint for now-

EXTREME THIRST. As well was my eyes are always dry, and my lips and nose as well. I drink a MASSIVE amount of liquid in a day. I don't even pee anymore then the average person either... infact I seem to pee less then most people. I would estimate I drink 5-10 times more liquid then the average person. My mouth is always sooo dry and I have been chewing gum every waking hour of every day for the past couple years.. if not my mouth just gets so dried out. I also apply chapstick about 10-20 times an hour. My lips get dried out that fast. My nose always gets dry as well (when I'm not sick with a runny nose that is). I get nose bleeds every one in a while from it. My eyes are always dry and itchy. I have to apply eyedrops quite often.

I believe that's it for now. Atleast I got this out there. Even if no one has any answers for me I'm just glad to finally get this all off my chest. I have more doctors appointments coming up but so far they've all told me they don't know what's wrong with me good bye have a nice life. It's so FRUSTRATING!!!

[alonealways]

I have no answers but I just wanted you to know that I've read the entire thing and I'm so very sorry. I'm here if you wanna talk. PM me anytime! (:

[glittermist]

Hi Kathryn,

In many ways i can relate to you - ever since i was little i've had so much 'wrong' with me, in terms of never feeling healthy. I've caught every bug you can catch, i get the flu/common colds with cough/sore throat more than the average person. I also have many other symptoms you've described among others such as: headaches, nausea, extreme fatigue, dizziness, joint pains, chest pains, constipation, diarreah etc. I lack energy all of the time and i have anxiety as well due to missing a lot of school and being bullied. WOW it seems like we're very similar. The only difference is i've failed to be diagnosed with ANYTHING up until now - the blood tests would always come back negative even though i was certain something was wrong with me, and the only thing they've managed to find through blood work this time around was that i have iron deficiency anemia, and folate deficiency anemia. However, i have been on meds for iron deficiency anemia in the past and this did not make an ounce of difference. I am only one month into treatment for this current diagnosis, and my doctor recommended it would take around 2 months before my symptoms started to clear up. I've read up on anemia a lot, and i'm quite certain that it does not cause ALL of my symptoms so i'm still confused as to why they can't find out what ELSE is wrong with me. I've had brain scans and numerous other tests too, yet they always just fob me off and tell me nothing is wrong.

I guess i'm trying to say you're not alone in this. If you ever feel like talking, i'm always here. <3

[Fucking Done]

No answers, just thought i'd let yah know that people remember yah. You're the one that helps the cats from years ago
Sorry to hear that you haven't been feeling well, and I hope you get better soon.

[kathryn]

Yay for just having someone listen to me! My friends all think I'm nuts... gahhh.

Glittermist- same problem!! The thing is my bloodwork and tests will have something really weird one time that makes them go hmmm then the next time it is gone! I once had a urinalysis and my protein was like a 4 when it should be a .04 or something stupid like that... they rushed me to the nephrology dept. cause they thought my kidneys were failing.. then poof- next time around it's perfectly normal. This keeps happening. I'm anemic then I'm not... there's something funky then it's gone.

I just recently had bloodwork and it was totally normal. Negative ANA. No rheumatoid factor detected... everything was totally average. The only thing I personally saw on the sheet was my WBC count was on the lower end... but the doctors didn't mention anything about it so I dunno.

It's just I can't stand it and I feel like there is something more. There is no way this is all in my head. Am I a bit depressed over this? Sure! I've lost almost all my friends and am almost non functional. I do everything I can to get through the day though and considering the being sick came before the being sad about it...


And yes.. I am the cat lady Infact that's probably why I'm going through a lapse... one of my cats died recently and it was really rough. He had a horrible heart defect and he was only a wee baby I had rescued A vet I am friends with did heart surgery on him for free and saved his life.. but he died a few weeks later after getting horribly ill. So it was really rough on me cause he was my little dude and I worked so hard to save his life more then once and still lost him in the end. It took a real toll on everyone involved with his care.

[glittermist]

Yeah, i get the whole 'friends/family' thinking i'm nuts thing too! Because i always seem to be complaining about something or other being wrong with me and i guess because they're healthy they never understand. I'd do anything to experience what it feels like to have NOTHING wrong with me, to be able to dance like i used to without fear of passing out or having a huuge headache and breathing problems, even walking gives me headaches and dizziness.

Ah, i'm sorry your blood results seem to be inconsistent - that must be the most stressful thing to ever go through, <3 For me, everything usually comes back negative up until recently...but i know how you feel with this because we KNOW our own bodies and we KNOW something is wrong, we just wish the damn medical professionals would be able to tell us what's wrong, we put our faith in them and they don't seem to be doing an awful lot. They say technology is so advanced so really how hard can it be to find a few things. =/
Lol, sorry, i'm turning my replies into a fully-fledged rant, I do apologise.


I'm sorry about your cat, also. The pain and stress of dealing with such a loss is never good for anyone, and certainly doesn't help your health. Just know that your cat would have been grateful for all that you did for him, there was nothing more you could do.

[kathryn]

No I totally understand... before I was just saying I felt sick but now you just look at me or touch me and you understand. On Thanksgiving I was feeling kinda weird all day and sat down to dinner and everyone just looked at me and could see how awful I looked... my mom felt my forehead and I was burning up. I then went to the next room and began to vomit and then fell asleep on the sofa. I think that was sort of a turning point recently when my family had been around me all day so clearly I hadn't been doing anything I shouldn't have been doing... I was just hanging out helping to cook food. They could see how fast I went from just feeling a bit sleepy to being horribly ill.

My mom still insists I have a vitamin deficiency. That's the stupidest thing I've heard. Yes, because I'm not too fond of fruit and don't eat meat must be the reason. Even though every doctor has disagreed with her she doesn't care. I don't think that taking a vitamin is going to fix all this.

I've got two rheumatologist appointments coming up. I had to go to my GP recently because I'm sooo exhausted I couldn't wait. She prescribed a Medrol Dose Pack.. it's a steroid anti inflammatory. I'm on day 3 and since it's only a 6 day pack I thought I would feel better by now She said it works right away to give people a boost. Yeah right..

[glittermist]

If there's one thing i've learned, doctors lie! They can't wait to get you out of the surgery and onto the next patient so they can go home and put their feet up. Okay, not all doctors are like this - but the majority i've had the pleasure or shall i say misfortune of meeting! lol.

I hate it when my family insist i'm either making it up, or it must be because of 'so and so'. Again, we KNOW our own bodies, we know our own mind and actions.... in many ways it's like 'the boy who cried wolf' - after a while, people just won't believe you and convince you you're making it up until you go mad. Well, that's how i feel about everything.

Anyway, i really do hope that they can figure out what's wrong with you. Hopefully it's pretty soon. You don't deserve this at all!

[losing touch.]

Originally Posted by glittermist

If there's one thing i've learned, doctors lie! They can't wait to get you out of the surgery and onto the next patient so they can go home and put their feet up. Okay, not all doctors are like this - but the majority i've had the pleasure or shall i say misfortune of meeting! lol.

I hate it when my family insist i'm either making it up, or it must be because of 'so and so'. Again, we KNOW our own bodies, we know our own mind and actions.... in many ways it's like 'the boy who cried wolf' - after a while, people just won't believe you and convince you you're making it up until you go mad. Well, that's how i feel about everything.

Anyway, i really do hope that they can figure out what's wrong with you. Hopefully it's pretty soon. You don't deserve this at all!

have you tried changing your GP?.. or seeing a different GP in the practise. i'm a firm believer in getting a second, third, forth.. etc. opinion when the first doctor you see doesn't help.

[kathryn]

Originally Posted by Elle.

have you tried changing your GP?.. or seeing a different GP in the practise. i'm a firm believer in getting a second, third, forth.. etc. opinion when the first doctor you see doesn't help.

I agree.. I myself have tried many many doctors at many practices as well and everyone is like hmph... no one really wants to take on the challenge it seems. I've been to so many different places.

Besides the rheumatologist I am interested in some other specialists.. maybe an immunologist or internal medicine.. something else to look into.

It would be better if people just listened to us! Sure, sometimes it is 'in your head' in the sense of some kind of nerve disorder or something, but that still doesn't mean it's not real and your crazy. ACK

[losing touch.]

Originally Posted by kathryn

I agree.. I myself have tried many many doctors at many practices as well and everyone is like hmph... no one really wants to take on the challenge it seems. I've been to so many different places.

Besides the rheumatologist I am interested in some other specialists.. maybe an immunologist or internal medicine.. something else to look into.

It would be better if people just listened to us! Sure, sometimes it is 'in your head' in the sense of some kind of nerve disorder or something, but that still doesn't mean it's not real and your crazy. ACK

i know how you feel.. i was ignored for the best part of a year and told there was nothing wrong with me before i finally had enough and went into A&E and literally demanded that they find out what was wrong with me.

i am very bitter when it comes to doctors because i would be in a way better situation now if i had been listened to. i just wish i had been more forceful.

[glittermist]

I've been to all sorts of places, i've had pyshio, been back and forth to specialist clinics, had brain scans, blood work, etc etc, heck...my current doctor even thinks i have asthma now and so i have to take a pump every night. I just think everything is ridiculous, they shove all sorts of stupid medication in my face that seems totally unrelatable to any symptoms i've been having.

*breathes*

I have a feeling there's loads seriously wrong with me and it's only a matter of time before I deteriorate(as if i haven't been doing so already) and i feel only a trip to A&E would save me, because like you guys have said. - no one is listening.

At one point i convinced myself that all of the symptoms i've been having is down to anxiety and that maybe it's not really "there" but tbh i just don't know anymore.

[losing touch.]

Originally Posted by glittermist

I've been to all sorts of places, i've had pyshio, been back and forth to specialist clinics, had brain scans, blood work, etc etc, heck...my current doctor even thinks i have asthma now and so i have to take a pump every night. I just think everything is ridiculous, they shove all sorts of stupid medication in my face that seems totally unrelatable to any symptoms i've been having.

*breathes*

I have a feeling there's loads seriously wrong with me and it's only a matter of time before I deteriorate(as if i haven't been doing so already) and i feel only a trip to A&E would save me, because like you guys have said. - no one is listening.

At one point i convinced myself that all of the symptoms i've been having is down to anxiety and that maybe it's not really "there" but tbh i just don't know anymore.

if you're not getting anywhere with your GP, then go to A&E.. honestly, it's what i did and i was diagnosed two days later after being admitted to the ward and put through a load of emergency tests. if you go to A&E they cannot just send you home with no answers..

[glittermist]

Originally Posted by Elle.

if you're not getting anywhere with your GP, then go to A&E.. honestly, it's what i did and i was diagnosed two days later after being admitted to the ward and put through a load of emergency tests. if you go to A&E they cannot just send you home with no answers..

I'm supposed to finish my course of iron and folate tablets, and finish my pump as well. Then after that i have to go back to my GP and have another blood test done to see whether my deficiencies have gone away and if my symptoms have cleared up. I guess if i still feel like this then i will go to A&E because i can't stand being given all of this medication which proves to be useless. But you're right, they can't send me home with no answers and i'll probably get a much more efficient check up with more thorough testing.

[kathryn]

What is A&E?

I've also had scans, MRI's etc.. I've been in so many kinds of physical therapy..I've been to a chiropractor and all those types of doctors. All relief is only extremely temporary.

When I had my wisdom teeth out in October 2008 the pain was unbearable, and what is worse is that because of my sensitive stomach I would vomit the pills back up. But honestly, even when I started to keep the meds down (it was oxycodone so that's major stuff) I felt NO relief... not from the teeth or the rest of my body. Also before that procedure I was given Valium and I must say that did absolutely nothing either.

I honestly feel like my body is so screwed up that beyond actually sedating me I will never be pain free. No matter what medications I have been on for helping with my sleeping problems or pain or inflammation it's not made a bit of difference.

No medication at any point since I've gotten sick has helped with anything. Period. Nothing works. Or, if they do up the dose to try to get it to work, I get horribly sick. I either have absolutely no response to a medication (ANY kind of medication, related to the condition or not) or I get horrible side effects.

My body is just insane!!

[topov]

A+E means Accident and Emergancy.... I think the term is E.R in the USA

[losing touch.]

Originally Posted by kathryn

What is A&E?

I've also had scans, MRI's etc.. I've been in so many kinds of physical therapy..I've been to a chiropractor and all those types of doctors. All relief is only extremely temporary.

When I had my wisdom teeth out in October 2008 the pain was unbearable, and what is worse is that because of my sensitive stomach I would vomit the pills back up. But honestly, even when I started to keep the meds down (it was oxycodone so that's major stuff) I felt NO relief... not from the teeth or the rest of my body. Also before that procedure I was given Valium and I must say that did absolutely nothing either.

I honestly feel like my body is so screwed up that beyond actually sedating me I will never be pain free. No matter what medications I have been on for helping with my sleeping problems or pain or inflammation it's not made a bit of difference.

No medication at any point since I've gotten sick has helped with anything. Period. Nothing works. Or, if they do up the dose to try to get it to work, I get horribly sick. I either have absolutely no response to a medication (ANY kind of medication, related to the condition or not) or I get horrible side effects.

My body is just insane!!

A&E is accident and emergency - the same as ER if you're in america..

i can definitely sympathise with you, i felt the exact same way - that absolutely nothing was working.. i think sometimes until you can get a definite diagnosis and they get to the root of your problem it is like that, unfortunately. it sounds like you're in a really difficult situation, but it's definitely worth being persistent in trying to get your symptoms under control. try different doctors, insist on further tests, ask more questions, do research yourself.. it's very frustrating though, i know.

[kathryn]

I was just in the E.R. yesterday actually... I had fallen down the stairs (yet again!) and though I may have broken my foot for the 3rd time recently... luckily it was just really bruised and I sprained or pulled something. While there I did tell them about my problems and the nurses were like oohhhh and ahhhh and were all interested in me since I'm so young... But beyond that the dr checked out my x-rays, said nothings broken and take some tylenol (LOL! right, tylenol. I could take a whole bottle and all that would happen would be I'd barf.)

I feel like if I get 'sick' one more time before I can get to a rheumy or am still not finding anymore answers, I'm checking myself into a hospital and not leaving until they figure out what is wrong with me. Honestly there has been so many times I'd just be out of service for 3 days to two weeks with a cold, the flu or things like that. Last time I had strept throat I started feeling ill on a thursday afternoon, by the next day I was horribly ill and did not get back to work until the next wednesday. And it was during the summer.. not exactly strept throat season IMO.

Well, thanks for the support. It's just been a struggle all these years. I have honestly been working my butt off the past year to try and get myself together. I went back to school (college!) but I've already dropped out and failed all my classes. Besides being sick I swear I am cursed with terrible luck.. it's been one thing after another. Since I am mostly confined to my home due to anxiety and the sickness's, I take ALOT of comfort in my animals.

I've had 3 cats die on me.. all under really awful circumstances... my little dude who had the heart surgery really took a real big hit to me. That cat was like my own child... I did not let him out of my site for his entire life when I found out he was sick. Now my other cat has just been diagnosed with a terminal illness... My turtle had died...

It's just my only true 'friends' are animals and 2009 was just an awful year.. one animal after another literally got sick or died around me. My cats are all I have and loosing 3 (all 'foster' animals) at young ages, and other ones getting ill.. it's just like being stabbed in the heart.

[Gemma =]]

Hey Kathryn,

First thing I'm going to say, it's scary how much of a similar situation I am in just now!
I suffer almost all of the same symptoms as you and also have Raynauds.
I too have been looking for a diagnosis for years, never got one.
Actually, I have an appointment at a rhuematology clinic tomorrow for results of tests for lupus. If lupus hasn't already been mentioned by your GP/any of the specialists you have seen, you should maybe mention it.
Seriously, go to the lupus uk website and look up the symptoms of lupus and you will find, like me, you have A LOT of the symptoms. Note down which ones you have and take the note with you to your next appointment.

Do you attend a rheumatology clinic? When I was diagnosed with raynauds and had positive ANA results I was signed up to one and have to go every 6 months or as often as needed if the symptoms get bad or I get any new ones.

I can totally sympathise with your feeling ill all the time. I started university in September and my flatmates have all remarked that since freshers I've been ill constantly. It's depressing when you never feel well, constantly feeling like something's not right. My mum accuses me of being a hypochondriac because I'm ill so often!

My advice would be to keep pushing for a diagnosis. Keep a diary of your symptoms and mark them down every single day, anything that you feel- write it down. Keep it going for a month or two then take it to your GP/specialist. They can't ignore a list so big of debilitating symptoms.

I really do hope you get somewhere with it because I know how it feels and how much it can affect your entire life.

[kathryn]

Thanks Gemma... yes I SO thought I had lupus.. My ANA came back negative though. So did my test for RA (arthritis). I still feel like it's probably lupus but since my body is so screwed up at this point that my body may not be responding the proper way and hence the bloodwork not showing anything?

And also, I am like 99.9% positive I am on to something... Sjorens!!! It fits so well and also goes WITH other problems...

Symptoms vary from person to person but may include:
a dry, gritty or burning sensation in the eyes
dry mouth
difficulty talking, chewing or swallowing
a sore or cracked tongue
dry or burning throat
dry or peeling lips
a change in taste or smell
increased dental decay
joint pain
vaginal and skin dryness
digestive problems
dry nose
fatigue

I basically fit that profile quite well. Always needing to apply chapstick and hand lotion and I need to drink water and chew gum all the time as well as apply eye drops. I always have a sore throat.

My teeth are in decent shape.. I think because I chew so much gum (sugar free mint gum like Trident that helps reduce cavities) it wards off the bad things from happening.

My nose is dry very often and the joint pain fits... I can't say anything for the vaginal dryness as I'm not sexual active.. like at all.. and never have been... I barely have enough energy to get out of bed let alone have a boyfriend


I don't think Sjogrens causes 'sickness' though, like how I always have a cold or the flu. It more or less causes chronic annoyingness but that's about it.


I haven't been to anything more then my orthopedic dr and my GP for the past 18 months or so. I kinda gave up. I felt basically helpless. So I just stopped going. Now I'm trying to hurry up and go to as many places as I can - my health insurance runs out when I'm 19!!! I need to try to keep it because otherwise I'll die without it as sick as I get sometimes... Plus being accident prone doesn't help... Ugh!!

[Gemma =]]

Yeah I actually thought of Sjorens when you mentioned dry eyes but I wasn't sure of the other symptoms of it.
Well if those symptoms apply to you, go to your GP and don't be afraid to say " I think I have Sjorens, these are my symptoms...."
If you say that then hopefully they'll have a proper look in to it with the right tests and stuff.

See I think that's terrible that you have to worry about your health insurance running out too! Since we have the NHS I don't need to worry about that and I think I sometimes take it for granted.
You should definitely try and get some sort of treatment/diagnosis before it runs out.

You should maybe ask your GP if they think it would be useful for you to see a rheumatologist as well, as your symptoms seem to be very like what most of the illnesses they deal with are.