pulp

I'm in the nursing program at University. Got 3 semesters left for my degree, hope I can get well enough to complete it!

It's weird isn't it! When it all began it started with the dreams + fatigue + aching hands. My body feels stiff too in the morning, but no wonder considering I probably do not sleep very well. I never enjoyed the dreams, they are usually quite unpleasant and the feeling from them lingers the whole day. I sweat too some nights, if I put the comforter on I'm instantly sweaty and if I remove it I'm so cold it hurts. Odd to be honest! I think my pressure can drop quite low when sleeping - have had measured like 70/40 or something in the night.

I sweat much more than I ever did. Enough I get even slightly excited or upset and I'm drenched. Twice I've had my whole body sweating so bad it even drenched through my pants. Before I barely ever was sweaty, not even in the hottest summer day. If I eat some big meal I get cold sweats in the hands/feet.

I sleep very poorly, fragmented. Dream weird lively dreams which I remember every morning, I can remember waking up many many times every night. I fall asleep again quickly but wake up again quite fast. Worse when I'm being active, then I get jolted awake constantly throughout the night. Not very fond of sleeping anymore, it has become something unpleasant. Usually my body aches, especially my hands, in the morning. The ache can wake me up sometimes.

I just ordered Vitamin B12, Vitamin D and Magnesium pills. Maybe they will help me out some, I probably have some Vitamin D deficiency since I have not been in the sun for years, spent last two summers indoors working and live so far north we don't get strong enough sun in the winter to produce vitamin D.

Thanks for the feedback guys!! I thought it was so messed up that she told me it was normal. I don't know how to reply to that - she's supposed to call on friday and I have a feeling she's allready made her mind up regarding me and my symptoms. Blood samples I've given have all been normal so I should be healthy.. as if I didn't know that, I wish I was healthy!!

Sometimes, mostly if I have been exerting myself too, after I eat I don't only get the icecold hands/feet but also start to copiously sweat and shiver + anxiety hits. I guess that's the norepinephrine hitting.

Bren, that makes me feel more certain of myself, thanks! I really wonder why this doctor told me it was normal - I gotta admit to feeling a bit like 'doh, I finally thought I had something I could show them that's not normal AND visible, when she said well that happens to everyone who stands still I just went silent. I'm going through doctors faster than I'm going through my underwear. I did tell her about POTS and she said she would read about it until next week, I really hope she'll keep her word about that, there's not many doctors left to see around here. ~Naomi~ yes! I've seen that picture before. I actually didn't think I had pooling until I compared my legs by letting one rest/putting one down and then the difference was as striking as in the photo. Trach that's just so sad! My family didn't really take me seriously until I showed them my discoloured legs, now they are worried and wondering what the **** is actually going on. I never heard about cyanotic legs happening from just standing /in a healthy person) when I did my anatomy/patophys classes, I wonder where the doctor I met learned that.

That's called Raynaud's phenomenon. I'm sure there's quite alot on google about it!

I do! Mostly after meals though.

Yeah I think my legs look swollen too if I'm upright long enough! I just got so surprised when the doctor said it was normal - I mean does this happen to healthy people? I've seen it in the elderly I care for but they usually have damaged veins and so on. What does your pooling look like?

Thanks for the reply Momto! I thought it was a typical symptom and if this isn't pooling then I'm not sure what pooling is. I don't have a diagnosis but fighting to get one. PCP said she would speak with her superior and call me back in a week.. got a feeling it will be the same thing like "test-results are normal, sorry nothing wrong with you here's the number to psych". Told her my psychiatric doctor thinks this is somatic though, maybe that'll help.

Hey guys. I saw the fifth PCP in a row now today regarding the stuff that's going on. One thing that i have is that my legs feel very full and go red when I'm upright. If I stand still they take on this kind of coloring: I showed her this picture, this was after I had one foot on the ground some 2-3 minutes and other resting horizontally. PCP told me it's normal. But is it, really? In my age - I'm 25 and have never had any issue like this before and I work on my feet walking around. My legs had never felt stuffy before except when I was pregnant and they were filled with fluid. Does this kind of discoloring happen generally too when "healthy" people stand still? I mean none of my friends had never even experienced something like this. She had me stand still some minutes for bp-takes and I was barefoot so she saw my feet turn blue but said it was normal since I wasn't moving around. Maybe I've gotten something wrong but I thought the healthy body handled being upright by contracting veins so the blood went up anyway, can't recall ever seeing my feet (prior to getting ill) or anyone elses feet turn this color.

I had a sick parent as a child. Not for very long, my father did die in cancer when I was 14 after a short battle. What I can give you from this is something I wish I would have had - honesty. No one talked to me about it, that is still my remembrance of it. It was like this you-know-who being in the house that no one mentioned but still knew about and I was so scared. I was so scared he was going to die and he did. I'm sorry your daughter is struggling, I think you should try to really talk to her, make arrangements for a safe place where she can really voice all her concerns maybe not to you but about you. Tell her that that all this must be hard for her and maybe further on explain more about your illness for her - maybe she is afraid you are dying? Everyone around me was pretending or acting as if something was not wrong when there was. It was confusing. I don't tell my daughter, she's just 6, all about how I am feeling but I tell her as much as I can without her having to shoulder any of it. Inevitably she has to - it's due to me we can't do all the things we used to but I try to be as honest as I possibly can. I totally lost track of school (I was a straight A student) and a "pleaser" like your daughter but I was so sad cause of everything I just lost hope. I got counselling later and it helped me. Maybe that would help your daughter? As a teen it might be hard confiding in family. I know it was for me. I longed for someone to talk to me as an adult but most was hushed down. What I know from that time is what I read from my fathers journals when I became old enough for it. Love, Anna

I get quite similar experience to Chaos'. Since all this came I started getting déjà vu's like every day too, just me who gets that? It barely ever happened before. The out of body surreal thing is one of the things that freak me out the most, world feels unreal. Makes me think I might have some dissociative disorder or something.

Makes perfekt sense Dani! That's it. I have been severely depressed when I was about 20 (am 25 now) and I remember what it was like. No will for anything. Now I haven't lost the will to live but the means to do it. Fought like mad to get to university being a single mom without a good education and now that I'm there and halfway through I can't handle attending it anymore. Typical! Think that would depress anyone. Yeah I think so too Thankful, last time I went cold turkey and I got so sick from it it was horrible. Definately not a very nice withdrawal. The serotonergic effect tramadol has makes it even worse urgh. I'm trying to be careful with weaning off though, I'm taking them every second/third day right now and it's been allright except last night, the withdrawal even more messes up my body temperature (can't handle the comforter on cause it makes me instantly sweat but if I take it off I'm so cold that in turn wakes me up too, doesn't even work putting half body in/half out, either so warm it burns or so cold it hurts. Frustrating!)

I really miss the sensation of being relaxed too! My body feels wired all the time. I especially miss the relaxed sleep I was a total expert at before, haha. All this made me realize how much I really took such things for granted before!

Thanks much for the feedback! Great reading about what you do for yourselves. Gives me some inspiration. I (luckily) have 3 hobbies which I can do from home - I spin yarn + knit and then I'm also an old online gamer. I can still do these things most days, spinning yarn makes my legs go numb though. Most of the time I just focus on whichever it is i'm doing in the moment and try not to think too much about tomorrow but some evenings when I'm alone and too tired to do any of it it finds me. I'm a total TV-shows nerd too. Thinking of maybe starting meditation, I used to do this long ago. I have huge issues relaxing, I didn't have a good nights sleep in years feels like it. I still remember the feeling after a nights sleep, the relaxation and ahhh feeling, I miss it alot! The constant agitation in my body gets to me! Agomelatine is a new kind of antidepressant which I got for my sleep, I have not noticed any effect on my mood though. I have tried most other antidepressants (SNRI, SSRI + TCA's) and felt really bad from them. I did not have these physical problems then though and it's quite many years ago so maybe I should try again. I try to tell my friends how I feel and I do have a therapist now, however my therapist is quitting her position in a month and I have to find a new one. I think one reason that I'm feeling this bad right now too is that I'm weaning off the tramadol I have been on for quite a long while for pain - they have an antidepressant effect. Maybe I should wean off them at some other time, I just started feeling uncomfortable taking them all the time and even when I was not in pain cause I get sick when I quit. I asked my pain management doctor for something else but I've tried just about all painkillers without much result. (I have chronic pain due to my tailbone being all messed up) I believe it's like a million people who emigrated to US from Sweden back then, it's kind of cool! I'm a finnish citizen living and born in Sweden but I speak fluent Swedish. Where does your relatives live Momto?

Hi all! I'm still undiagnosed and have not felt well in a long time. Unable to work and I'm holding on to school by a thread. I'm undiagnosed with alot of symtoms, shame to say there are basically no doctors at all in Sweden who work with this. None that I have managed to get to anyhow. My quality of life has gone down alot as I'm sure you guys can understand, since I stopped working it's the excruciating fatigue + tachycardia that's the most debilitating. Lately I've started to feel more depressed and thoughts tend to be more negative, doctors not taking me seriously does not help with the matter. I'm the sole caregiver of my daughter and live with her alone so I'm by myself alot of the time with my thoughts and find myself too tired to go anywhere. Maybe it's ME/CFS I suffer from, who knows - something's still not allright. I started agomelatine treatment for the insomnia but am not getting very good results. I did do a holter monitor around christmas but don't know the results yet. My psychiatric doctor puts me in sickleave if I want to, I have postponed it a couple of times but since I'm obviously not feeling better I know it might be better f I accept it, the social isolation (eventhough I live in it right now) and giving up I feel it represents scares me though. What do you do to keep going? The thought of me maybe never getting my life back is so big and painful I can't touch at it.

My uncle has peripheral neuropathy and he has RLS from that and can't really stand still for any amount of time, I think what he describes sounds similar to what you are describing. He has lost sensation too though. Maybe that'd be something to look into?

I live in Sweden, it's a bit different here. Here you can stay away from work one week without a paper from the doctor which the doctor sends to the health insurance office where it can be denied or approved (been alot about this last few years cause some really sick people got their disability taken from them sort of). If you go on sick leave doctor has forms he fills with information of the diagnosis, estimated time needed on leave etc and then sends. If the time he grants you on sick leave is longer than "normal" for whichever condition you are having he has to write extra and motivate why. If it gets granted it's usually 2-3 weeks at a time and then the doctor does an evaluation to see how I'm doing and then has to send the paperwork in again. Thank you for the wellwishes.

Momto, problem is I still don't have a diagnosis, still waiting for two different appointments. One of them with a medicine specialist and another with a doctor abroad. The only doctor lately has been the PCP I saw who actually took me seriously, having met 3 others before that who just blew me off as having anxiety issues. This doctor referred me but has just seen me once. I will try and call there tomorrow and just say what's up, I mean I get so exhausted from one day at uni it takes me many days to get slightly better - it's not humane. Prio 1 in my life simply has to be my daughter and at this point I can not cover her needs. Just feels so weird asking for sick leave. So much want to finish uni but I have to work on accepting it might not happen inside the timeframe I had put up. I did ask my psychologist where I should turn to and she said not to psych atleast since it's somatic problems I say is the problem. Was kind of hoping to find a way out there just in case but won't happen I guess.

Okay since I joined up in the diagnostic limbo I've kept getting worse, especially the total and complete exhaustion (getting myself into the shower takes about 3 days of will.. I'm sure you guys understand where I'm coming from). I had 5 weeks of internship at the hospital and really gave it my all, since then I'm totally out of it. On top of that I got a cold last week which really was the straw. I hurt everywhere. I still feel somewhat ok mentally most of the time, I would not call myself depressed - there's so much things I want to do etc but I don't have the energy to even cook for me and my 6 year old daughter. So, now it is getting at me mentally too (it wont get better etc etc) and I understand that. I didn't have any time off since July last year when kido was with her jack-in-the-box-dad. I got offered sick-leave before the summer but decided to keep going and I worked my *** off this summer which I guess I shouldn't have, I got a cold and went to work too soon and started getting the tachy and dizziness on top of my crazy stomach problems. Maybe I've made myself sick. I'm rambling now, I'm gonna get to the point, I want to get on sick leave, to do that I need a doctor to write a certificate which I can send to the health insurance office. I don't know what I should turn to the doctor for or which doctor, there's so many things wrong but I guess the exhaustion is what is making me totally unable to do anything. Psych I don't know - I'm not depressed but exhausted. Maybe PCP? Thankful for any feedback, hugs Pulp

I don't suffer so much from brain fog, I think, I've tried to read up about the meaning of it. I know some evening I tried to count my pulse when I was standing but after 3 attempts I stopped cause I couldn't. I have some other weird thing, I (especially after waking up - takes hours for it to resolve) feel as if someone has poured sirup or put cotton in my head. I can still form words etc but I'm just so exhausted I can catch myself just staring out into nowhere for a long time. I hate the feeling.

Hi IceSkate! I'm sorry you're going through the same thing. I did manage to meet a GP who believed me and that's good - he's a resource from whom I can get referrals to specialists. Right now I'm waiting for an appointment at the local hospitals medicine section. I'm also on propranolol from the GP and it has helped with most of the tachy though it seems hard to find the right dosage, he started with 40 mg x3, one pill had me 40-50ish bradycardia so now I'm taking 20 x 2 and it seems to work somewhat most days. Forgot my pills at home yesterday morning so yesterday evening and today didn't have any and sure noticed a difference, really high pulse all day. I so hope the specialists at medicine will believe me, hopefully will since I've worked with most of them the last 5 weeks while I've been at the cardiology ward as a student and know them by name and face.