Discussions By Condition: I cannot get a diagnosis.

Four years of multiple symptoms

Posted In: I cannot get a diagnosis. 25 Replies
  • Posted By: Claire79
  • June 5, 2008
  • 10:51 AM

Hi everyone

Around four years ago, for no apparent reason, I started to feel tired. Not the usual tiredness after a day's work, but more of a fatigue. It has gradually got worse over the last few years (and more specifically over the past few months). I have a "background" tiredness which is always with me whatever I do and what I would say is normal tiredness on top of that when I've been working. The normal tiredness disappears with a good night's sleep (I get around 8 hours a night), but the background tiredness remains. I have no delayed fatigue associated with exertion.

At a similar time to the fatigue, I developed problems with my circulation and have constantly cold hands and feet unless the weather is really hot or the central heating in my house is up high. I also started to experience weakness in my legs when climbing stairs.

I was "diagnosed" after a few months of symptoms with chronic fatigue syndrome. This diagnosis has recently been overturned by my new doctor, although he hasn't given me a new diagnosis yet. He said that the absence of post-exertional fatigue and a specific infection before the fatigue began were contraindications for CFS.

A couple of years back I started experiencing episodes of pins and needles, mainly in my arms and hands, at night. It wakes me up. I tend to go for months without this occurring and then it will happen several nights a week.

In January I started to feel dizzy - things look like they're moving when they're not and sometimes I feel like I'm moving when I'm not. This dizziness is constant at the moment and gets worse when I'm very tired or stressed. It makes me feel spaced out. I've also started to get occasional shaking in my hands, particularly my right hand. I used to - and still do - get internal shakiness when I'm really hungry, but this seems to be separate and I can actually see my hand shaking.

I recently saw an ENT who specialises in balance problems. He reckons that the dizziness is migraine associated vertigo and is unconnected to all my other problems. He reckoned the spaced out feeling is depersonalisation disorder, which was really odd because I just thought feeling spaced out was because I'm exhausted and dizzy. My own doctor doesn't agree with his diagnosis, but again couldn't say what she thought it was. The specialist advised dietary changes - normal stuff for migraines, which I did say I already did because I've had migraines for years (of the common variety). I still had to listen to a nurse telling me to cut out red wine, chocolate etc. etc. It was all a bit bizarre.

Where on earth do I go from here? I'm getting increasingly exhausted, the dizziness is interfering with my work and the shaking and pins and needles are just annoying.

Sorry for the long post! Any ideas gratefully appreciated.

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25 Replies:

  • hi claire,snap! i have had all these things wrong with me kept pestering the dr's asking them to find out etc etc.does your hair fall out a lot? feel cold and dry skin? exhausted all the time and have to drag yourself about?i eventually asked the drs to test my blood for everything and they did and i have an underactive thyroid. i am always sat next to the fire whilst the rest of my family melt! i get the shakiness and feels like i am starving even if i have eaten not long beforehand and feel all dizzy and faint.have you had your thyroid checked? if not i would recommend this as it sounds exactly like me. once the thyroxine you take gets to the right levels you feel much better,take care.
    morgown 1 Replies Flag this Response
  • You should both go see the post "Lyme?" of Michele611 from June 4 near this mail...I think it is lyme and there you have infos given by me, and Blaze, about it and where to find a good dr cause iNfectious dr don't treat lyme properly and the test is not good, i did post a proof to Michele. Im sorry im too tired to copy paste these links...When something normal wrong, dr find it!When they don't and a lot of symptoms, it is often lyme.Anyway, do u very believe you started feeling chronic fatigue and all this for no cause???Please go see the links!Fannie
    Fannou 111 Replies Flag this Response
  • Fannie - to get Lyme disease you need to have been exposed to tick bites. It's definitely worth excluding though, I must admit. I've never believed my chronic fatigue started for no reason (although there was no obvious cause, even tick bites). I'm not even sure that Chronic Fatigue Syndrome is an actual illness - by that I don't mean that people diagnosed with it aren't ill, I just mean that they are ill with lots of different things rather than an illness called CFS and the doctors haven't worked out what it is yet. hi claire,snap! i have had all these things wrong with me kept pestering the dr's asking them to find out etc etc.does your hair fall out a lot? feel cold and dry skin? exhausted all the time and have to drag yourself about?i eventually asked the drs to test my blood for everything and they did and i have an underactive thyroid. i am always sat next to the fire whilst the rest of my family melt! i get the shakiness and feels like i am starving even if i have eaten not long beforehand and feel all dizzy and faint.have you had your thyroid checked? if not i would recommend this as it sounds exactly like me. once the thyroxine you take gets to the right levels you feel much better,take care. Thanks for your reply. I have had my thyroid checked a number of times, TSH fluctuating in the normal range (varying from around 2.2 to 3.5). My hair doesn't fall out. But I do get cold very easily, even when everyone else is hot. I'm back to the doctors on Monday and hoping to get some more tests done, as well as previous tests redone just in case. After years of avoiding doctors, the tiredness and exhaustion is too much to cope with. They have to find out what's wrong.
    Claire79 5 Replies Flag this Response
  • You are not alone! Been facing almost similar symtoms you mentioned, except the migraine; for the past 6-9 months. Doc and lab reports have been inconclusive. Lets hope we all can help each other and find a solution soon! :) Cheers
    Anonymous 42789 Replies Flag this Response
  • Less than 50% remember a tick or a rash. I dont remember all this too. But i have lyme. Hope if you're going wrong, you will look at these links cause ir the dr don't find, it is cause it is lyme!!Fannie
    Fannou 111 Replies Flag this Response
  • Fannie - I promise that one of the things I will ask my doctor for tomorrow is a test for lyme. sid - yes, fingers crossed on the solution to it all! The migraine part is really weird. Migraine runs in my family - all of the rest of my immediate family get migraine. It would seem odd to have loads of symptoms, but that the dizziness is migraine. Luckily my own doctor agrees, so hopefully they'll treat it as part of the whole picture, rather than the consultant who was trying to separate the dizziness from everything else. I think the worst thing about that entire consultation with the specialist was the fact he suggested that my feeling spaced out was depersonalization disorder. I looked it up on the 'net, and it doesn't say anything about being a result of fatigue and dizziness... and yet those are the reasons I feel spaced out. I'm sick and tired of people suggesting it's a psychological problem. To the extent that I also plan to get a referral to the mental health team to get an all clear on that front.
    Claire79 5 Replies Flag this Response
  • Claire, as you'll can see in the other posts i answer, lyme test are not good if not the one of lyme specialist.I gave links for this on the other post if interested please look.Fannie
    Fannou 111 Replies Flag this Response
  • I can fully relate to that 'psychological problem' angle; curently my docs, family and friends are hinting in that direction too. I have become tired of explaining that i am sick and fatigued. Not making it up!! I run a pretty successful business and quite enjoy that, do not know of any incident causing grief or stress....what mental problem i cld have, i am unable to fanthom! My 'gut' tells me there has to be a clinical reason for my fatigue and i wld rather trsut that than any lab report or doc. :) Good luck mate.
    Anonymous 42789 Replies Flag this Response
  • A psychological issue doen't neccessarily mean your making it up. Stress which is psychological can cause a lot of different things to happen to your body. Look at it this way, if someone you care for dies you feel sad-which is psychological- but causes physical symptoms-crying, but thats just a start, you end up feeling it through your whole body. Having too much on your mind can cause a wide range of physical troubles, but that doesn't mean your making it up, just that the cause isn't physical. If your doc thinks everything psychological is "made up" its time for a new doctor. Anyone whos ever even been embarassed and felt their cheeks blush can tell you that theres a physical connection to almost everything psychological. If someone whos spent all that time in medical school can't get that, that sounds like a grade A idiot to me.
    chromegirl666 101 Replies Flag this Response
  • Understood & agreed. Thanks i needed that :)
    Anonymous 42789 Replies Flag this Response
  • Almost sounds like a blood sugar thing with some Thyroid problems. Have you tried taking quality vitamins, changing your diet, and some light exercise, i.e. bike riding, jogging, etc. Diet: Mainly vegetables & fruits, and lean meat, nuts & seeds. Avoid processed breads, cookies, sugar, sweets, etc.Worth a shot?
    SailorinAZ 10 Replies Flag this Response
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  • I can fully relate to that 'psychological problem' angle; curently my docs, family and friends are hinting in that direction too. I have become tired of explaining that i am sick and fatigued. Not making it up!! I run a pretty successful business and quite enjoy that, do not know of any incident causing grief or stress....what mental problem i cld have, i am unable to fanthom! My 'gut' tells me there has to be a clinical reason for my fatigue and i wld rather trsut that than any lab report or doc. :) Good luck mate. Thanks, sid! I actually do have some things that perhaps could have contributed to my general tiredness - in the last four years my grandparents both died, my uncle died, my cat (who was 18 years old) had to be put down, I applied and failed to get into medical school and had to end a relationship with my partner who was bipolar... to name just a few things. I spoke with my doctor yesterday. I decided to go down the whole "it's all psychological route" to try to get him to exclude it or not, but whilst he agreed that the tiredness could be to do with the last few years of my life, he reckoned there was definitely a physical thing going on with my dizziness. I'm going to be trying some medication soon to test a theory of migraine associated vertigo to rule that in or out. The doctor said that although it was quite obvious (and understandable) that I wanted a diagnosis and a pill to cure it, that medicine didn't work that way. Ho hum... seeing him again next week when he reckons the letter from the consultant will be back. Then I can try those meds. To be honest, even if they are just able to stop the dizziness, that would be great.
    Claire79 5 Replies Flag this Response
  • I've heard that migraines can cause lasting damage sometimes, depending on frequency and severity,I wonder if they can cause enough damage to cause your dizziness.As far as lyme goes, by all means get tested, but it's fairly rare. In 2006, 19,931 cases of Lyme disease were reported yielding a national average of 8.2 cases per 100,000 persons. In the ten states were Lyme disease is most common, the averagewas 30.2 cases per 100,000 persons.http://www.cdc.gov/ncidod/dvbid/lyme/ld_UpClimbLymeDis.htmBut for some reason its a very common suggestion on this board. Good luck Sid. Please let us know as you make any progress, I would love to hear you got a solution :)
    chromegirl666 101 Replies Flag this Response
  • I too have had episodic dizziness and general fatigue. I had a "bout" of generalized weakness that caused me to walk like an elderly person (I'm 35). Two doctors have noted unexplained weakness in my front thighs. I have strange headaches that do not fit the migraine description. I've been trying to figure this out actively for the past 6 months but think it actually started about 1.5 years ago. I've had 4 MRIs, an EEG, a Sonogram and a CT Scan. I also have been sent to a Psychiatrist for evaluation. He told me that I am not depressed, not making the symtpoms up and not inducing the symptoms- yet that doesn't keep people around me from accusing me of those things anyway. The only thing that has come back are a few blood tests slightly out of range and the MRIs and CT Scan show a blockage in my right sinuses. The doctors are discussing the possibility of operating to take out the blockage, partly in hopes that that will help my symptoms some (although the ENT says he doesn't expect anything drastic) and partly so that they can take samples of the blockage and tissue and brain fluid to be tested. I know how frustrated you must be and how hard it is to deal with other people not caring or at least not being very sympathetic at times- since we don't have a choice but to care because it is with us all the time. I had a severe bout of vertigo (dizziness when you feel like things are moving around you or you are moving when you are not) and was holding the wall to keep from falling over. One of my co-workers actually asked me "what's wrong?". As if it's the first time or something. I am having Neurological problems too though. I can't seem to remember things that I should know (like my birthdate). I have trouble keeping track of dates, places, times etc. I get confused and disoriented. I'm uncoordinated so I keep hurting myself and the injuries don't heal, partly b/c I keep smashing the same spot over and over. I assume they've ruled out MS and ALS in you too?
    dizzy lizzie 192 Replies Flag this Response
  • I too have had episodic dizziness and general fatigue. I had a "bout" of generalized weakness that caused me to walk like an elderly person (I'm 35). Two doctors have noted unexplained weakness in my front thighs. I have strange headaches that do not fit the migraine description. I've been trying to figure this out actively for the past 6 months but think it actually started about 1.5 years ago. I've had 4 MRIs, an EEG, a Sonogram and a CT Scan. I also have been sent to a Psychiatrist for evaluation. He told me that I am not depressed, not making the symtpoms up and not inducing the symptoms- yet that doesn't keep people around me from accusing me of those things anyway. The only thing that has come back are a few blood tests slightly out of range and the MRIs and CT Scan show a blockage in my right sinuses. The doctors are discussing the possibility of operating to take out the blockage, partly in hopes that that will help my symptoms some (although the ENT says he doesn't expect anything drastic) and partly so that they can take samples of the blockage and tissue and brain fluid to be tested. I know how frustrated you must be and how hard it is to deal with other people not caring or at least not being very sympathetic at times- since we don't have a choice but to care because it is with us all the time. I had a severe bout of vertigo (dizziness when you feel like things are moving around you or you are moving when you are not) and was holding the wall to keep from falling over. One of my co-workers actually asked me "what's wrong?". As if it's the first time or something. I am having Neurological problems too though. I can't seem to remember things that I should know (like my birthdate). I have trouble keeping track of dates, places, times etc. I get confused and disoriented. I'm uncoordinated so I keep hurting myself and the injuries don't heal, partly b/c I keep smashing the same spot over and over. I assume they've ruled out MS and ALS in you too? Hi dizzy lizzie.....love the name by the way ! Anyway to the point........are u on any medication & if so it would help to list it. Regarding Neurological problems, some meds can do this, it is worth considering. Post all meds, dosage & how long uve been taking them. Kind regards :)
    Tootsie 628 Replies Flag this Response
  • Hi Claire, are u on any meds also ? if so would u also list them, dosage & length of time on them ? All of us at some time are other have started taking meds in good faith, but alas many can cause added problems & everthing can get muddled up,its worth considering. Best wishes :)
    Tootsie 628 Replies Flag this Response
  • I was never bitten by a tick - that is a myth and one of the main reasons why even I kept discounting the possibility of Lyme. You can get Lyme from mosquitos, fleas, biting flies, to name a few. Few people are aware of this - you hear 'Lyme' and think 'tick bite'. Nope. I got my Lyme from FLEAS and MOSQUITOS. I would suggest you join Lymenet and post your symptoms there. They will help you find a doctor (LLMD) who is willing to challenge the CDC's and IDSA's current guidelines for diagnosing Lyme (guidelines which, consequently, are to be reviewed due to pressure from Connecticut's attorney general who found that doctors who believed in chronic Lyme were not allowed to present evidence, and that those who came up with the current guidelines had ties with vaccines, pharma, and insurance companies). Click on "symptoms": http://www.canlyme.com/ Lyme Disease: The Unknown Epidemic http://articles.mercola.com/sites/articles/archive/2001/07/25/lyme-disease-part-two.aspx When to Suspect Lyme:http://www.angelfire.com/biz/romarkaraoke/whento.htm Lymenet: http://flash.lymenet.org/ubb/ultimatebb.phpBlaze - I am sorry to disappoint you but you are 100% incorrect- there is NO transmission of lyme from fleas nor mosquitos -- even your own references state that it is a tick borne disease (except for one but since it doesn't have any citations, I can't evaluate it). There have been studies that found that because of the anatomy of the flea/mosquito introduction of Borrelia burgdorferi (the organism that causes lyme) causes death of the host.Just because you do not remember having had a tick bite, doesn't mean it didn't occur. Per your own references, a large portion of people cannot document history of a tick bite.
    Anonymous 42789 Replies Flag this Response
  • Almost sounds like a blood sugar thing with some Thyroid problems. Have you tried taking quality vitamins, changing your diet, and some light exercise, i.e. bike riding, jogging, etc. Diet: Mainly vegetables & fruits, and lean meat, nuts & seeds. Avoid processed breads, cookies, sugar, sweets, etc. Worth a shot? My blood sugar is normal and so are my thyroid; did an ultrasound too to double check. Doc has asked for Electrokyte, Urea, Cortisol tests, reports expected on Friday - will update. Till then - good health wishes
    Anonymous 42789 Replies Flag this Response
  • Tootsie, Thanks for your interest and liking my name. ;) I am on no medications. For a while I was taking B12 (1000mg once /day) and folic acid (1mg once/day) even though I am not deficient in either one but at the advice of my PCP. The B12 was supposed to help the fatigue and the folica acid the memory problems. Neither helped what it was supposed to but the folic acid made me pee twice as much. Urinalysis showed no UTI. I realized that I felt worse taking them than not when I forgot to bring them on a trip and never went back on. Every once in a while if I am really dizzy I take a 25mg Meclizine but that's not a regular thing. I also seem to feel better the day after vigorous exercise but then not the day after that. So I think that's what ruled out CFS. That and the fact that I don't get suddenly sleepy. I'm just generally fatigued all the time.
    dizzy lizzie 192 Replies Flag this Response
  • dizzy lizzie - no one's even mentioned MS or ALS, let alone sent me for an MRI. Sorry to hear about your problems. It is so frustrating. My dizziness is much like your's - things moving when they're not, me feeling like I'm moving when I'm not. Nightmare. One thing you've been lucky with is having a doctor that knows what CFS is!!! I've never experienced the delayed fatigue that is characteristic of CFS, nor had any virus preceding the fatigue. And yet still diagnosed with it! Argh! It's been a constant battle ever since to get anything done. My lab results are usually fairly normal. CBC usually picks up a high normal WBC and sometimes shows monocytosis. But these are always read back to me as completely normal. Tootsie - I'm only on one prescription medicine: mefenamic acid 500mg (for period pain) and this I take rarely, not even monthly, but when I do it's 3 tablets a day (for a couple of days). I take co-codamol 8/500 for migraine (usually have to take 2-3 doses of 2 tablets each time).
    Claire79 5 Replies Flag this Response
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