Discussions By Condition: I cannot get a diagnosis.

Symptoms for 4 months - can't find anything wrong - please help

Posted In: I cannot get a diagnosis. 22 Replies
  • Posted By: metamit
  • June 22, 2008
  • 04:37 PM

I am a 32 year old mom of 4. Since February I have had these symptoms that come and go in bouts of about 2-3 week stretches at a time:

extreme fatigue - the fatigue will last about a week to two weeks and then I'll be fine for about a week, but then it returns.

bad edema in face, hands, feet, ankles that get worse when I sit for work and when it's hot. In the mornings the swelling is mostly my hands and face, my feet and ankles swell through out the day as I work or as the day gets warmer

intermittent chest aches that come and go
extreme shortness of breath - I can't walk up the stairs of my bilevel home without running out of breath

frequent headaches and an increase in migraines

I also have other symptoms like changes in my skin texture and pains that come and go elsewhere, but the doctors don't seem to think they are related to what's going on with me.

I've seen two doctors since February when all of this started. They've ruled out my heart, GI problems, kidney, liver, etc. They've also ruled out auto-immune conditions, thyroid, Lyme Disease, etc. I just had a CT scan done that has officially ruled out anything in my GI tract - so now the doctor's answer is to put me on anti-anxiety medication. I am already taking Hydrochlorithiazide for the edema in my legs, however, it makes my fatigue and headaches worse when I take the pills. I did opt to take Lexapro last month, who can blame me for being a little depressed when you've been sick for 3 months, but the Lexapro actually made me feel worse. Now the doctor wants to try a stronger antidepressant like this is all in my head. But when I asked "what about the edema" he says he doesn't have an answer for that. Of all the tests they've put me through over the course of the 4 months I've been going though this, the only thing that shows up is "high inflammation" - what that means, I don't know. I had a stress Echo done and they said my heart valves and everything is fine, though I do have an irregular heartbeat (always been there, never been an issue)

What can be causing all of this and why can't they figure it out? I've been in for multiple tests all the while I get treated like I'm an anxious hypochondriach or something. This isn't in my head - I even took pictures of my feet at the end of the day just to show the doctors that I can't imagine my feet swelling.

I don't know if these symptoms are related or not (my doctors don't think they are)

my skin has become very dry and I'm getting tiny spider veins all over my face - I also get this rash on my face that comes and gos (they though Lupus, but the blood tests showed that it's not Lupus they said)
I do have "female" problems with cramps, heaving bleeding and things like that - but they've checked my hormones and said my levels were fine

I've been getting weird spots on my skin that use to be just tiny pin-size red dots (been told it's normal) but now are larger and in places I haven't had them before, like across my chest, under my breasts, etc.



I'm at the end of my rope - I'm only a 32 year old woman that shouldn't be having to live like this. We've even tried antibiotics - and nothing helps. Is there anyone out there that can tell me what to do? My doctors won't listen, and this is not all from "depression and anxiety" and I'm tired of being treated like a nut case. I should mention that the fatigue and edema was a problem right after I had my 4th son - back then it made my blood pressure rise but after about 6 months on Hydrochlorithiazide we got it under control and I haven't had issues with my blood pressure since, just the edema and fatigue. They never could figure out why I had the problems then, either.

I've spent countless hours on the internet trying to find something, anything, that could explain these symptoms away - all I want is a proper diagnosis so that I can fix it and go back to my normal life.

Reply Flag this Discussion

22 Replies:

  • Thank you for your response - actually - they have ruled out anything Lyme related - we live in WI where there's a high-rate of Lyme Diseases cases, and my doctors are sure it's nothing Lyme related. I've seen your post on just about every thread, but I assure you, it's not Lyme.Yes - they little red dots I've been told are indeed petechiae which I have had for years and were nothing to worry about - the new red dots I'm speaking of are actually quite a bit bigger and are in areas I've never had petechiae before - and they're oddly shaped. The one I can actually feel the bump of, the only reason I've mentioned the petechiae is because I don't know if it could be related to what's going on with me or not.I should also mention that I live out in the country - we are no where near the possibility of a cell tower causing these symptoms. I do appreciate your time, though. Thank youI should also mention that every test, blood test, chest Xray, CT Scan and EKG's were all normal - the only thing the doctors can find in my blood that confuses them is the high inflammation.
    metamit 23 Replies Flag this Response
  • Please don't be offended - I do appreciate your post, and it's not that I don't believe you - it's just very highly unlikely that this is Lyme. I've already been treated with antibiotics even though my screening was negative. Up where I live, Lyme is very common and anyone that exhibits flu-like symptoms or anything out of the ordinary gets tested for Lyme as a usual procedure, with or without the bullseye. The fact that I would have had to be bitten in the dead of a Wisconsin winter makes it highly unlikely as well (sub-zero temperatures and all that). I actually did visit Lymenet through a link on one of the threads before I posted this one - I've spent countless hours trying to find an explanation and as much as I wish it was Lyme (atleast there's a fix for that) it's not.Do keep posting your information, though - I wasn't attacking that at all - it's posts by people like you that keep people like us informed and I didn't mean to insult you.
    metamit 23 Replies Flag this Response
  • Metamit, First of all, it's not in your head! Did they say where the high inflamation is? Which test showed high inflamation? You mention that you have an irregular heart beat. How irregular is it? Irregular heart beat could cause edema. Are both legs equally swollen?
    Felsen 510 Replies Flag this Response
  • The first round of blood tests they did in February they said my blood work showed inflammation that was up in the 30's, but I don't know what they meant. When they redid my blood work in March after a round of antibiotics, it was still in the high 20's so we did another round of antibiotics and redid the blood work, and it was back into the 30's.I've had an irregular heartbeat all my life, and it's never caused any ailments - even now the doctors don't seem to think it's causing any of this since my Stress Test was fine.The swelling is equal in both legs, though sometimes my left foot is more swollen then my right. My hands seem to be equal swelling, too, though they improve throughout the day while my feet get worse through the day.
    metamit 23 Replies Flag this Response
  • Metamit,I wish I had a magic wand and could help you, but I don’t and I am not a doctor, I know too little.But I want to tell you that my mum hade swollen legs when she started having irregular heart beat. Her doctor (a very bad one!) didn’t recognize her condition until it was almost too late. But one day when she was almost suffocating of all the liquid in her lungs (this was 12 years after her first swelling in legs) the ambulance people knew right away that it was her heart and started treatment right away. After she received treatment she lived another 15 years till she was 88. So what I’m trying to say is that there are bad doctors out there and that you might have swollen legs from irregular heart beat.I really hope that they soon find out what is wrong and that you get better. Something is obviously wrong, there are signs of inflammation, so it’s not in you head!!Best of luck!! I wish I could help more.
    Felsen 510 Replies Flag this Response
  • Have you been tested for alergies of any kind - food or chemical.
    Larkenn 20 Replies Flag this Response
  • Hi Met, Your story is alot like mine. Not that I have all the same symptoms you have but I do have the fatigue, swelling, chest pain and the random pains here and there. I have been trying to find out what is going on for the past 2 years. Althouth I do have hypothyroidism, these symptoms have not gone away with medication. Like you, I have been tested for everything under the sun... I was told that autoimmune diseases can take up to 15 years to diagnose. Sorry, I have not been of much help. Just want you to know that you are not alone! Kiera
    Anonymous 42789 Replies Flag this Response
  • Thank you for your replies.That was the first thing I thought when all of this initially started was naturally, it's my heart, but 2 doctors and a cardiologist later I'm know further than I was when I started.I'm sorry to hear about your mom - I'm going to keep on my doctors until they atleast give me a diagnosis - I just want my life back.
    metamit 23 Replies Flag this Response
  • Hi Kiera - thank you for posting. Up to 15 years - argh! I had another appointment with my doctor yesterday afternoon - he wants to redo my blood work for autoimmune in 3 weeks (something about it may take time to show if it is autoimmune). He's also thinking of sending me to a lung specialist since I can't breathe normal. My lungs are clear and nothing showed up on the xray, though, so I don't know what could be going on with my lungs that would cause the rest of this.Oh well - guess I'll go beat my head against the wall again LOL
    metamit 23 Replies Flag this Response
  • Since February I have had these symptoms that come and go in bouts of about 2-3 week stretches at a time: Can you think of anything back when you first started getting these symptoms.. which may of set the condition off??????? Anything unusual or different in your life which happened back then just before you first came down with the symptoms eg a vaccination, a particularly stress even eg exams, surgery, dipping sheep, a virus etc etc. Also as the illness is cycling.. are you like resting more when it's bad.. having it come then come good ..so doing more things again.. then coming down with it again?? Im wondering if it is related to your activity levels in anyway?
    taniaaust1 2267 Replies Flag this Response
  • I feel your pain. I'm 22 and have been going through what you've been going through (sans the edema) for 1.5 years. The doctors always treat me as though I'm wasting their time. Did you have a bad virus at the onset? Even just a flu or tummy bug? Has the idea of the mysterious Chronic Fatigue Syndrome epidemic been considered?
    Anonymous 42789 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Thanks ...So far they can't seem to find anything viral or bacterial to be the cause. I think of all the symptoms I can handle for the most part - but this edema is getting bad, especially when it warms up. Yesterday it got 90 degrees up here and both my legs and feet were huge - very painful. I don't know if the doctors have considered CFS - I can ask them, though - it's worth a shot I guess.When this initially started in February - I hadn't been sick or anything. One night I had a dinner party and after everyone left I went to bed and had a sudden sharp pain in my chest out of nowhere. It turned into an ache and by the next morning I couldn't breathe either - it was like someone was sitting on my chest. I ended up going to the ER but they couldn't find anything, they treated me with Nitro and asprin and put me on oxygen and I felt much better, just tired. They initially thought Plerisy because of the quick onset, but my doctor ruled that out when I went to him for follow up. I was sick with the fatigue, shortness of breath, edeme (face, arms, hands, legs) and dizzy spells for about 2 weeks that round. He treated me with an antibiotic, but it didn't work. It ended up clearing up on it's own in my 3rd week and I felt better for about a week or two - I still had some chest pain every now and then, but the fatigue was better.Then, over the course of about 2 days the chest pain got worse, my fatigue came back, my swelling came back, all the symptoms and this time it hung on for about 2, almost 3 weeks before leaving again. I was okay for about 2 weeks, and then sure enough, everything came back again, but this time it was almost a month before it left. Now, it comes and goes in 1 to 2 week stretches.What has my doctors stumped is the fact that up until February I was normal - my friends (after all of this started) said they thought I was looking a little tired and run down before February, but they thought maybe it was just the whole Holiday blues or something. I'm an active 32 healthy woman - even now, I make myself push through it to carry on my normal routine of work, kids, house. There's no reason for this to be happening.Thank all of you for listening to me.
    metamit 23 Replies Flag this Response
  • Good luck with your quest!I have been dealing with the swelling of my legs and tingling in my arms and legs. I have actually had a problem 3 times ... first time my arms and fingers actually went into acute hypertention where they actually froze and I had no movement, second time I passed out the third time I just had the minor stiffness in my arms and tingling but I get weak and nearly passed out. this is on top of all the swelling, easy brusing, tenderness in limbs. If I stop my diaretics because of the potassium issues I swell up overnite and within 3 days have gained as much as 12 lbs. I go back on diaretics and lose 15 lbs in 3 days. I have gained nearly 50 lbs in a short time. Last summer I added a second diaretic and lost 35 lbs. I did better sleeping and with my wieght for 6 monts then in January I had the stiffness of joints and loss the movement in my hands I was told it was potassium deficiancy and was given pills for that. But since then I have gained nearly 20 lbs that no doctors can explain. I too have had the CT on my brain, ultrasound on my swollen legs, CT on my heart and liver and all the nerve studies. all the blood work you can imagine. if I didn'thave good insurance I would be penniless since the tests have cost nearly 18k since january. and still nothing! I was also offered the antidepressants, the doctor actually asked me if I was thinking of hurting myself since I was clearly depresed (sobbing at the time) but my first thoughts were NO! but I am considering hurting YOU!!!!! (on the inside of course).anyway this all started about 4 yrs ago. I was originaly told I had Lyme but I didn't get better with all the antibiodics for nearly 4 mon and just got sicker. then was retested and the specialist I saw didn't believe I actually lyme. so here I am up till 4 yrs ago a healthy 46 yr old and now downhill with everything! I want to scream daily or cry !!!!!
    Anonymous 42789 Replies Flag this Response
  • Oh my - 4 years and they still don't know? I don't know if I can go through this like you have. I feel your frustration, though - I could strangle someone sometimes. Are they still running tests and stuff on you to try and figure it out? Up until a month ago I didn't have insurance (self employed) so I've been having to pay out the wazoo - but I got married last month and am now on my husband's insurance, so hopefully they'll start running tests I couldn't afford to to before and maybe, just maybe, they'll figure this out LOLMy thoughts are with you novo
    metamit 23 Replies Flag this Response
  • hi i came accross ur post when i was on a hunt to finding more on swelling toes in winter.....ur case is soo related to mine...i was ill after my delivery and i was told its postpartum depression, i also had a swollen left leg for a few weeks so major concentration was my leg..but my problem was fatigue and the pain ...i was referred to a rheumo' and had several test run..then i was told..."it could be FIBROMYALGIA" the could be has been now taken for granted and a trial and error of different medication is going on with me..cymbalta...then reboxetine...and honestly from the time i have started believing that i have fibromyalgia i feel even more sick .....i am on quest to finding out what this syndrome is.My daughter is now 5 years of age and i was told it could be fibro around two years ago. I was at a loss for those 3 years not knowing what is going on with me. although you have never mentioned anything related to your sleep..and vivid dreams...it is a vicious circle and sometimes i feel if only sleeping pattern can be rectified things can get better...taking medication can be risky in the long term but when the doctors show a silver lining i just give in sam
    Anonymous 42789 Replies
    • January 10, 2009
    • 08:53 AM
    • 0
    Flag this Response
  • Hi,I have been going through a similar problem of vague symptoms for 5 months, but no diagnosis and plenty of people telling me it's in my head or just "depression". Every time I hear that I could scream! This is not in your head; keep looking for an answer.Anyway, have they done any autoimmune testing since your inflammatory makers were high. When you say it was in the 30s I am assuming it is your sed rate.Hang in there!
    frustratednp 17 Replies
    • January 11, 2009
    • 05:20 AM
    • 0
    Flag this Response
  • Okay, the spider veins and other features being described on your face is most likely due to telangiectasia and based upon the other symptoms mentioned, I do indeed believe it to be related. My initial impression here is systemic sclerosis, or scleroderma. More specifically, I believe it's likely more associated with CREST syndrome, although I'm somewhat concerned about organ involvement, despite testing that may have revealed otherwise at the time the tests were performed. Let me ask whether the following tests have been performed: ANA, Scl-70, Centromere IgG antibody, RNP and PM-scl antibody. I'm aware that you stated a lot of bloodwork had been performed, but I want to be certain that the above tests were inclusive. I'd like more specifics about the skin condition if you don't mind. Tell me the characteristics of the skin at the sites where the changes appear and whether you have any other odd features noted about your skin, ie small calcified plaques or whitish lesions on the extremeties, etc. I seriously doubt that this is psychogenic in nature. While somatic features of clinical depression can manifest in various ways, there is supporting clinical evidence to suggest the cause to be otherwise in your case. I very often find it to be habitual of the more contemporary practitioners to readily couch undiagnosed signs and symptoms in terms of somatoform disorder. If you can provide me with greater detail, I can offer better direction. I also did not take time to read through all of your responses, so some of the inquiry made may already have been addressed by you and if so, please bear with me. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 11, 2009
    • 02:31 PM
    • 0
    Flag this Response
  • A question to Sam: is your left leg still swollen?
    Felsen 510 Replies
    • January 11, 2009
    • 03:35 PM
    • 0
    Flag this Response
  • Are you on hydrochlorothiazide by itself without potassium supplements?What dose are you on?Are you on a low-sodium diet?Three things cause almost all significant edema:heart trouble(What is the name of the irregularity you have?),liver disease,and kidney disease.
    richard wayne2b 1232 Replies
    • January 11, 2009
    • 05:02 PM
    • 0
    Flag this Response
  • Do you know what your albumin level is?Alow albumin can cause edema,too.If your potassium level is low that could explain your inability to climb the stairs.
    richard wayne2b 1232 Replies
    • January 11, 2009
    • 05:13 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.