I have only just came back from an appointment with the new GP, bloods are all fine apparently, FBC - platelets were borderline low again, just under, so he wasn't too concerned with the symptoms i was having didn't relate he felt. ESR, LFT's, TFT's, Random sugars, all fine he said and in range.
I brought up lyme disease and said id like to bring it to attention as before my symptoms started i was really sick on holiday in Cyprus. He said ok and got up the internet page and started to look into it, unfortunately the NHS page isn't too great as there's a lot of controversy, about the rash and all, etc. He said you don't remember a rash, i sort of felt like i needed to lie but i shouldn't have to, at a later date i can always go back and say, oh i did get a rash, at so and so, if needed.
I said do you need a rash, and he said no not necessarily, and read on the page about the symptoms presenting as FM and CFS, he said normally a specialist lab would test for it as it's a clinical diagnosis and there wasn't nothing on the page that made him think "YES", but he said, he's not saying it's not that or it is, but wants me to see what the rheumatologist say in a few weeks time.
So, although it's not ideal, fairly happy with this GP so far, whereas some would say "definitely not, no no", etc, he said, Greece not being a popular area, doesn't bring much concern, unfortunately as the page still says it's rare and is outdated i feel. But he didn't dismiss it, anyhow, i think the NHS tests are pretty unreliable, but for the time being, wants to see what the rheumy says and i guess to rule out possibily causes.
Think it's going right way?
Got some bloods from the GP 2 days ago;
Full blood Count + Iron
ESR
Liver Function Tests
Thyroid Function tests
Urea/Electroylytes
Random Sugars
Should be able to get the results in a day or two, should i keep pushing for more? Ideally, he wants to see on the results, and if nothing is urgent, wait until my rheumatologist appointment as he said they'll do more tests to investigate the matter more than he will.
Weird, some days i don't feel too bad, then like today - BAM.
I always seem to have some degree of muscle stiffness, especially in my neck, and back. A lot of the problems are migrating though, for instance, today i went down to a shop, probably 15mins walking if that, after being home for a while, i was exhausted, not sure if the walking caused it, but i noticed it afterwards.
So, so exhausted that i have no energy and feel incredibly weak, as it eases off a little, i started noticing some facial problems, for instance, now, i have pain in my nose, like a cold/sensitive sensation, my eyes are hurting behind, and i have pressure in the back of my head.
I did have a docs appointment last friday, but felt it was a waste of time, as he didn't have any of my records yet from the old doctors surgery i was at and would take another few weeks to come, however, ive thought about it this weekened with my symptoms, and i might make a nother appointment and ask to be considered for lyme disease, or at the least some health routine tests, FBC, that stuff.
Just over 3 weeks until i see a rheumatologist, this is driving me nuts.
Miles i checked that out briefly, didn't quite match what im experiencing though?
Knee has been in ALOT of pain all day, i'll explain about that later, i feel i do need to get surgery on it though.
Earlier i went to the docs, was going to request a lyme test, however, it's a new doctors ive registered at, and they don't have my records, probably not for another few weeks, so it was kind of a wasted appointment. I guess i'll have to wait a month for my rheumatology appointment, but i'll keep searching for cancellations for the hope of an earlier appointment. Once i left the doctors, the glands in my neck were hurting and felt tight/swollen, just randomly out of the blue.
In the night, i woke at 3 am, went to the toilet, but wow, my left arm was lifeless, the feeling when you have no blood in your arm, i couldn't really bend it at all and it's almost as though i had no blood flow there - perhaps neurological symptoms? Maybe i just layed on it funny though..
With my right knee, i have a rare meniscus in my knee - a discoid meniscus, the surgeon just took photos off it from an arthroscope, and didn't remove anything, and he stated there was no tear, even though an MRI revealed a large bucket handle tear. It usually doesn;t give me much pain, only occasionally, however today has been a lot of pain, all day, feels as though something is getting caught in my knee, which is reasonable, so i'll see how it goes, and will try for a 2nd opinion, but may need to get it cleaned up and trimmed down.
I've found an article that offers a name of something else to consider:
Study of freakish mystery illness finds no cause
http://news.yahoo.com/study-freakish-mystery-illness-finds-no-cause-220159892.html
No hurry, though - no treatment available yet, and no test for it either.
Will request some tests for lyme tomorrow at the docs and see what they say. Last night i tried to take my mind off the constant aching tendons in my arms so went out for a meal. It's weird, but all of a sudden, i can come over REALLY tired, as if i could go asleep, at the same time, it would pass after a while. And my eyes felt REAL heavy and achey, hope there's something that can be done about all this.
I get real confused. Sometimes for brief periods i feel fine and feel "perhaps im ok", but more often then not there's times i don't feel fine at all. The tendon pain comes on from no where and no pain killers that ive used seem to touch it. There's no swelling or nothing, but i feel it's coming directly from the tendons. Along with this type of pain, there's often clicking within the tendon/joint, for example, when my bi tendons are aching up, i feel i need to straighten my elbows and hear the cracking sensation.
Im tired of having no answers, i will request a lyme test from the GP on friday, but it's so irritating, i feel like i need to grab and pinch the tendons at my elbow. It's normally noticeable badly in one part at a time, at least that's how Ive noticed it. For instance, last night i had bad pain in the tendons of my feet and heels, at least i feel it's coming from the tendons, i just am real tired of this.
Ive been offered chances to work, but physical work i don't feel i can do right now, even though i sould be able to, young male, and i explain to family members i can't do that work, and it annoys them as they think im not helping myself and what not, it just needs to end, seriously.
i have all those migrating symptems with muscle twitching...been to neuro and rhumy with no luck...ug and many more strange things..I to now suffer from panic attacks slash goraphobic..and spend way to much time looking at diseases...but I have to keep looking because the doctor wont...now i am looking into Small brain vessel disease...yah bob lol good luck
Some links on Lyme disease:
http://en.wikipedia.org/wiki/Lyme_disease
http://www.medicinenet.com/lyme_disease/article.htm
Lyme disease risk from dogs 'higher than thought'
http://www.bbc.co.uk/news/health-16706942
http://www.webmd.com/rheumatoid-arthritis/arthritis-lyme-disease
http://www.lyme.org/front.htm
At your age, Lyme disease looks like the next thing to test for. At least it appears to be treatable.
I'm not familiar with whether those pain killers also work for Lyme disease, so you might ask you doctor.
Ive had the pain for a while, i am quite young for a heart attack being 19. Ive read Lyme can cause migratory pain that moves around, i just don't get it, i mean, the tendon pain in my elbows, both elbows, never goes away when it arises, hot bath, pain killers, nothing works.
The pain killers i have are solpadol (co-codamol 30mg/500mg paracetmol) and dicoflenax 50mg used to work when i had neck pain back in october, now i take them for my tendon pain in my arms. It doesn't touch it or help at all, i have a knee op tomorrow but im more worried about everything else and it being something incurable, it's becomming overwhelming.
One cause of pain that moves around is a heart attack. Not everyone gets the chest pain symptoms. Not the only cause, though.
Is there a medical school within the distance you can travel? If there is, you could call them and ask if they're training any doctors who might be able to handle some of your problems. Medical schools often offer free medical care except for expenses travelling there and back, for those who volunteer to be treated by their students.
BAD IMSONIA last night, got maybe 3 hours sleep
Ive had pain in my spine almost constantly today, upper back mostly, but mid back too, tried having a bath with muscle gel, pain killers, didn't help at all. I used the foam roller and it helped a bit. Went for a walk but still not much help. Used the foam roller again and it took away the stiffness and pain in my back, but then instantly after the glands in the side of my neck are now hurting, im starting to feel like, why?
The pain in my spine is deep and feels like someone needs to push it back into place, what should i do int he meantime, i can't get to the docs yet, but i honestly can't sit around another month in pain just to see a rheumatologist.
See, now this is weird. Today, i woke up, went a pee, had a coffee, few cups of water, and ddn't need to pee for a good 4 hours or so. Ive got tests to do in a couple days anyway, for blood glucose and urea/electrolyes, perhaps im slightly low on salt or something, but some investigations inthat respect.
Seriously guys, is this looking like lyme? Today Ive got back pain again, but it's not just upper back or low back, the common areas, even the uncommon areas like my mid back hurt, and it's aches, and directly in my spine it feels, also the surrounding muscles usually feel stiff. Ive read lyme can mimic many disease, but am i just hopefully wishing here that it's the answer?
Ive heard of people being disabled and being spoon fed by loved ones from lyme, guess that's severe cases, even so though, the back ache and pains which pain killers don't seem to touch - last night my low back was severe pain, but i managed to get to sleep from it.
Ive done nothing or any injury that could of caused it, what do you guys honestly think? Should i push the docs for some tests, even if i convince them, they'll likely try to avoid testing, or just give me the unrealiable ELISA one. Should i say i remember a tick bite? I mean, i feel i'd have to almost say that to push them to get me some testing, i can't wait around no more, im wasting my life and precious time by sitting around.
Sorry to go on and on but any suggestions on what i should do next is massively appreciated, thanks.
So, in a nutshell;
- Pain over most areas of my body, varies in intensity and each day is different;
Neck - weakness and stiffness
Back - Both upper and lower back, low back is often severe.
Ankles/heels - aching tendons
Wrists + thumbs, sometimes go numb
Tendons at elbow, sometimes ache and make my arms feel weak
- Occasional fatigue/tiredness.
-Dizziness/Lightheaded/Weak.
-Nausea, increased motion sickness
-Excessive thirst and urination + dry mouth with foul taste.
-Itchy bottom - sometimes after going to the toilet, with this when i use the tissue, there is often waste there (embarrasing, sorry)
- Left eye twitching
-Increased sensitivty to cold (i have raynauds, but even so this is relevant)
All i cna think of right now, ut every day is different, for instance where i have been in less physical pain, i have noticed the excessive thirst and urination a lot more? I feel if i go to the docs about all this they will just label me as nuts or a hypochrondriac, im going there later today to ring up the thirst and urination, but im sure they'll just say, possible urinary infection. My dad says he has one at the moment, so could well be, but ive had this for years, just more noticeable past few days.
I just don't understand what's going on with me and it's all getting overwhelming and TOO much to bear. Raynauds, probaly DI, knee op in few days, pain everyday, i just can't deal with it no more and it's coming to the point where it is making me depressed and making me feel as though i just don't want to be here and end this misery, im ******* 19 and i haven't even had chance to get on with my life yet.
Today, Ive had to pee 3 times in 2 hours, and that's from drinking 2 glasses of water. I don't understand this though, Ive had this for as long as i can remember, but although it's been a nuisance, it's not been as bothersome or major as it is now. Perhaps because i know what it likely is im worrying, i don't know, but again, it's been a lot worse, and i haven't been in as much physical pain, so don't know if that's a possible connection from lyme magnifiying things? Going to go to the docs later, if i can't get in, i'll go to the hospital because this is making me sick.
Last night for instance, when in MC D's, had a coffee, and we were out a good hour or so and i was fine, perhaps i was just dehydrated, but the coffee got rid of the bad taste in my mouth, i just dunno, but Ive had it for as long as i can remember, but only the past couple days has it been ruling my life.
Nope, no heavy metals. I have the thirst/urination issue for as long as i can remember. A few years back i took the complaints to the GP's and they tested me i think twice for diabetes which both came back negative. Maybe should consider DI though. Only u/a i had was at A+E when i went in for severe back pain, perhaps they didn't test the thirst/urination as i didn't mention it, however when i was up there, i drunk ALOT of water.
The spit/slavia isn't sweet, just a really disgusting taste which usually only goes away with some type of food. It's almost as though there's a prolem with my tongue,
a rheumatologist doesnt specialize in these other things but should be aware of them because before they specialize they still recieve a full range of medical training... the thirst and urination is a common symptom of diabetes or kidney problems. i doubt it wuld be salt intake unless it is extremlly excessive. if your spit is white and foamy you are dehydrated and should drink more water, not soda or tea or anything but actual water. the foul taste could just be a side effect of the dry mouth. though it can also indicate other things... is it sweet? that leans tword diabetes if its ammonia like or metalic could be kidneys. just let the doctor know all of your symptoms and likely they will refer you to someone more appropriate. have you ever been exposed to heavey metals?
as far as testing for lyme, even if there are no labs that do that in europe test samples can be sent over seas.
NOT sure if this is related. Today i haven't been in as much physical pain, except for bad low back pain in the morning. However, i have definitely noticed the thirst/frequent urination a lot more today. I woke up, and didn't even have 1 glass of water, and already felt as though i was urinating a lot, and with this i became thirsty, drink water, it would go right through me.
If im honest, i think it might have something to do with salts, sodium, something like that. Because usually with the dry mouth/thirst i have a bad foul taste in my mouth, and feel i'll need to eat something - not necessarily sugary, as i could eat say a biscuit, to take away some of the bad taste. Again Ive had this for as long as i can remember, only it is a nuiscane and today it has been affecting my life, not sure if related to possible lyme disease, but will try and get a docs appointment to get it checked out for sure.
Back to the guy that suggested DI - i notice that the excessive thirst may be something else. I mean perhaps salt related. Ive just been to MC D's which is fairly salty, and although Ive drank water, i feel no different, often with the excessive thirst, i have a foul taste in my mouth with an incredibly dry mouth. For instance, wheneve i SPIT on the floor, it's real white or i can barely make any spit/slavia.
Should i make a GP appointment about all this and tell them? It is important. I have rheumatology in a month, but there not really designed to deal with this stuff i guess, unless it's all tied into one disease - LD?
How can i get accurate testing for LD in the UK? Surely i don't have to travel to the US just to get testing? There must be some reliable labs here. I want to take action sooner rather than later.
My symptoms seem to come and go and change. For instance, past few days I haven't had much nausea or dizziness, but instead Ive started waking up with back pain again, which i did in the past, but went away, now here it is again, and nothing Ive done which could of caused it. I can't keep up with all these symptoms.
With the thrombocitopenia, nothing. I saw a haemotologist who diagnosed it and she just discharged me as she said the level was only just under normal range. Ive read that co-infections like babesia can cause it too.
yah its best to get it looked at again no one should have to live with so much pain. maybe its something nurological have you ever had any nerve tests or mri's.. as far as the hunger lyme can cause a varity of strange symptoms that very from individual to individual... and can effect mood , appite , pain, almost anything. how are you being treated for thrombocitopenia? has it been corrected or is it still being monitared.. my mom had that and it could have been a side effect of her lupus.
Now i think back, im not sure when my raynauds started, but the only mole or bite that i do remember, is something i had removed was around my shoulder. Also a couple years back i remember in the summer getting extremely hungry a couple times in the mornings. I remember eating tons of cereal and a whole loaf of bread for breakfast, i thought it was worms or something. It eventually went away.
Don't know what to do int he mean time, but it hink i should get things checked, i don't want to sit about another month feeling helpless and wasting my life.