What's wrong with me?

Posted , 14 users are following.

Hi,

So I've showed symptoms of M.E/CFS for around 4-5 years, and recently have had 2 doctors suggest that that is what it could be (in the proccess of being diagnosed) however 4 months ago, the symptoms suddenly got worse (went to bed feeling normal, woke up feeling awful).

So here's my symptoms-

- Wake up with aches every day. Get pains around abdomen when breathing in when I've just woken up. (This used to happen a few times a fortnight, and it was possibly a week before period for a few days)

- Aches get worse with excersise. For example- go for a walk. Later that night I have restless legs with aches and pains.

- Swollen Glands (neck, stomach, and I also have a painful lump in my armpit which I believe to be a swollen gland as it comes and goes monthly)

- VERY tired. Not just sleepy tired. Drained, can't ever be bothered to do anything. Also mentally tired.

- Terrible memory. Jumbling up words or saying stupid things.

- After doing something such as going out for a long walk or into town, I get wiped out for days. During these days, I usually have crashes within each day that usually last a few hours and are occasionally made better by a nap.

- During these 'crashes', I get hot flushes, sweats, and my heart rate shoots up. It has got to 104bpm at resting, and the highest it has been has been 142bpm, which happened when I came out of the shower and dried my hair.

- Occasional dizzyness

- No matter how much I drink, I'm always thirsty. I drink quite a lot.

- I pee quite a lot. The doctor also found white blood cells in my urine, which she said can be typical of diseases like M.E. She also said it could be a sign of chlamydia, so I took a test and it came back clear.

- Sometimes when I stand up, my head pounds (to my heart beat) and its quite uncomfortable.

- I can sometimes feel my heartbeat in my fingers, ears, palms, feet and sometimes (very rarely) my stomach.

- Tiny white spots/patches on legs. It looks like I've applied pressure to my skin in a tiny concentrated place. They aren't raised, lumpy or itchy. They are just there. 

- At night time, I notice that my hands and feet feel like they have really mild pins and needles. I think it is always there, but I only notice when there is nothing else to distract me.

- Have a mildly blocked nose quite a lot of the time.

- Eyes feel uncomfortable in the light. Also my vision has depleted (long distance, now have glasses) but only very slighty and that has been over a few years.

- Occasional ear ache

- Occasional tooth ache

- IBS

- Occasional back pains where the kidneys are.

- Breathlessness. It was suggested by another doctor that I could have asthma, however I keep forgetting to sort this out.

- General not feeling 100%

My doctor found that I was defficient in Vitamin D and also Iron. I have been taking Vitamin D supplements (5 x 20mg Fultium- D3 800IU) since 6th June 2014, and 1 Hemaplex iron tablet per day (for about 2 weeks).

Over the past week, I have got some new symptoms-

- Swollen glands are very sore around neck and right armpit. Hurts to swallow because they are swollen, however I looked in my throat and there is nothing that looks sore. No redness or white bits etc. The pain extends to my jaw/teeth and ears. My ears have also been slightly wierd. Almost like when you get water in and they have twinges when they are unblocking. It doesnt hurt but it just makes a wierd noise.

- Ache in middle of chest when breathing in. Happens after eating, and has happened the past 2 days.

- Nausea (iron tablets) and bloating.

- Had watery eyes 1 day last week, although it wasnt when it was sunny, it just happened and I think I irritated my eyes with makeup.

- White spots on legs look more prominent.

My crashes have actually gotten less frequent and I have done a lot more than normal this week, however I do feel more unwell these past few days.

Please help me find out what's wrong with me!

(Also, renal function and liver came back normal. All other tests I have done have come back normal minus the vitamin D and iron. I have begun to feel slightly better with the Vit D tablets, however I was hoping to see a much bigger difference as I still feel unwell)

 

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  • Posted

    Hi Peachi,

    When you got your iron tested, did they also do B12 and folate? these work together, and if you have more of one it can deplete the others, I think.

    You have an impressive set of symptoms - I hope you are able to sort out what will help and what doesn't. I have heard people with CFS/ME say that any kind of infection or virus will push them right back, so maybe that is what has happened to you?

     

    • Posted

      Hi, thanks for replying  [smile]  I'm not entirely sure, when I had a blood test for iron, my doctor said she tested for all the components of iron also. So i assume that stuff too  [smile] I see her on Friday so hopefully will be able to talk to her more then. M.E wise I actually feel less tired, just more fed up that I feel ill.. definately not 100%. I had more energy at the weekend because my boyfriend was ill and I wanted to make him feel better. Instinct kicked in! haha. I will talk to her tomorrow. My biggest worry is that I'm scared that I could have leukieama? Because of the white spots and swollen glands
  • Posted

    Hi, thanks for replying smile I'm not entirely sure, when I had a blood test for iron, my doctor said she tested for all the components of iron also. So i assume that stuff too smile I see her on Friday so hopefully will be able to talk to her more then. M.E wise I actually feel less tired, just more fed up that I feel ill.. definately not 100%. I had more energy at the weekend because my boyfriend was ill and I wanted to make him feel better. Instinct kicked in! haha. I will talk to her tomorrow. My biggest worry is that I'm scared that I could have leukieama? Because of the white spots and swollen glands
    • Posted

      Hi peachi, it's good you are seeing your doctor, hope she is able to  reassure you about the leukemia - it is so easy when you are feeling ill and miserable to think you have all kinds of things if you start reading lists of symptoms! Partly because you want an answer to what's wrong, I think, as then you  hope something can be done to fix it!biggrin

      I always get copies of blood test results, because I want to know about stuff, and anything that helps me understand my ailments I find helps.

    • Posted

      Thanks for the reply! I don't think I do have leuikimia, I was just slightly worried it could be a possibility, hopefully not! smile

      Thanks for your help smile

  • Posted

    Well,Pechi, sorry about all your symptoms. Sure sounds like CFS/ME to me. I seriously doubt that you have leukemia. During my onset of this illness, I felt so awful I was sure I had a terminal illness. By the way, your extensive list of symptoms do fit in with what I've heard from other people with CFS/ME over the years. And yes, even your ear symptoms can happen with this illness. Sometimes I have the sound of water rushing in my ears, and I have ringing in my ears. One thing: please don't push yourself, and do pace yourself. Assuming you do have this illness, taking it easy is critical. Otherwise you can get worse. I want to end this on a positive note:  People with CFS/ME can get better. I have a few people in my life who have recovered from this illness.
    • Posted

      Thank you for your help, and I'm sorry that you have CFS/ME, don't think anyone deserves this illness! I hope you get well soon smile

      And I'm hoping so much that I can recover! I'm starting a new uni hopefully in October and I want to do as much as possible!

  • Posted

    Most of those are CFS symptoms or can be, I think if the docs have ruled out everything else it is worth getting a CFS diagnosis, at the specialist center I was sent to I was told to not focus on why I developed CFS but to use that energy on recovery.
    • Posted

      Thank you! Where can I get to your blog? I have an appointment with a specialist next week so that would be really helpful on what to expect! smile
    • Posted

      thanks! looking at it now, looks great smile hopefully ill find some good tips! im also going gluten free so this will be very useful smile

       

  • Posted

    Hi Peachipotter,

    I hope you get a diagnosis/help soon as you are probably feeling a bit lost without knowing. But i can say it's really wierd reading your symptoms as they're very similar to mine, I had a diagnosis last week by an NHS doctor who specialises in ME/CFS so maybe that's something to go off. Before my diagnosis I was thinking i might have all sorts of diseases, it did my head in!!

    I had my first therapy session today and there were other people there too, so it was good to meet people who share similar experiences. 

    I hope you get the treatment you need soon!

    J

     

    • Posted

      Thanks for the comment! Yeah I've been referred and have my first appointment next week, hopefully it will offer some clarity!!  Hope your well
  • Posted

    Hi Peachi,

    Good luck with your studies in the autumn. Make sure you let the uni know of your problems, they can give you extra help/time to complete work if you struggle, and it's always better to get that established earlier rather than later.

  • Posted

    Hello peachipotter,

    i was reading your post and the white spots/ patches made me think of a condition called Vitaligo.  This is an autoimune condition that can go hand in hand with other autoimune conditions - pernicious anemia being one of them.  I'm sorry that I'm not more knowledgeable myself but you can find out loads of information by visiting the pernicious anemia society website and comparing the white patches on your legs to images of vitaligo found on the web.

    I hope you find some answers. X

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