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Newly diagnosed but finding it hard to come to terms with it. Can anyone else relate?

Posted , 14 users are following.

EJO3089
EJO3089

So after alost 3 years of feeling unwell on and off (but recently ive more 'unwell' than 'well' tbh!) having an array of symptoms ranging from nausea, delicate stomach, wretching, flu type aches and pains, heavy periods, heavy stuffy sinus type headaches, wooziness, off balance, weak limbs, shakiness, heart palpitations, bad throats..I recently saw an endicrinologist who is certain I have M.E. I have had an array of tests including blood work, check for Addison disease, an MRI;of brain (3 years ago), ct scan of abdomin, endoscopy, 24 hour heart monitor, chest xray etc. he assures me I have all the tests done he would have wanted and as all clear he concluded M.E

The only common thing flagging on tests is persistent drop in ferritin levels so I'm on iron meds for that but that's all..he thinks this constant dip un iron may be why my M.E is flaring up more often but I still have my doubts. I have these bouts that can last days or weeks where I just feel so ill. think the iron meds have helped energy levels and fatigue not my most debilitating symptom which is why I'm questioning what else it could be..I just feel something still off like hormonal or blood sugar related (blood sugar also 'normal'wink. By far it's the woozy/off balance sensation and shakiness that makes me feel I'm going to pass out mixed with a tense, delicate pressure in stomach. It turns me into a different person, feeling anxious and on edge all the time and just constantly ill - so frustrating I'm not the mum and wife I want to be. I guess I'm still thinking it could be some sort of illness they haven't figured out yet..and keep questioning if i should ask for another MRI or endoscopy as mine was so long ago now could something else have happened since then..? I know I sound anxious but I'm just desperately wanting to get better and feel I've been left to get on with it but am struggling.

I'm waiting on referral to gynaecology and for a 7 day holter just in case. Endometriosis has been suggested as a possibility due to heavy periods and painful cycles and irregular bleeding.

I've tried everything I can to be proactive..diet changes, I'm young 34 yr old female non smoker and slim and hardly drink at all.I cut out gluten for months which helped nausea but made me feel weak and shaky all the time.

Did anyone else find it hard accepting their diagnosis?! Sorry for the long post.

2 likes, 45 replies

45 Replies

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  • megan97x
    megan97x EJO3089

    Posted

    I can completely relate to this! When I was first diagnosed I was 17, which was 3 years ago, I struggled to come to terms with the diagnosis and wanted the doctors to be wrong! I wanted them to just turn round and say it’s something that can be easily sorted out or dealt with! Although after seeing multiple doctors, having tests as you mentioned, being monitored in hospital time and time again because I was so unwell, I eventually came to accept that I have M.E and I have to learn to deal with it! 

    I’m only 20 so having to deal with this so young is a massive pain in the bum! I studied Health and Social care as well as seeing the doctor constantly for the past few years, so I feel like a bit of an expert these days! 😂 

    Your uncomfortable and irregular bleeding can definitely be down to the M.E! If you have more tests and it comes back that it isn’t another physical condition such as endometriosis, then I’d definitely start to try to come to terms with it being down to your M.E.

    Having M.E causes your whole body to go into overdrive as it weakens your immune system, all of your systems, organs, hormones and everything in between! Absolutely everything can be affected by it! Summer last year my fatigue got so bad, I slept for over 48 hours! I’ve been one of the unlucky ones I’d say.. I’m constantly fatigued beyond words, I fall asleep at work or anywhere I go, even when I go out to socialise with friends! No matter how much sleep I get, 4 hours or 40 hours - I still wake up just ready to go back to sleep. I never ever feel refreshed. My fatigue is probably one of my biggest issues with my M.E, but definitely not the only big issue! Constantly ill, living off extremely strong pain killers, muscle relaxants, iron tablets, gels/creams/ointments to help with pain in my muscles and joints.. the list goes on! I even have to drink more than the average person, as my kidneys are not as fully functioning as a person without M.E so I need more liquids to hydrate me! 

    So so much more I could write, but it’s late and (funnily enough) I’m shattered haha!! 

    Long story shortened, having M.E is absolute stress! I’m glad I’ve joined these community forums because it’s nice to know I’m not alone with this! 

    X

    • janet71271
      janet71271 megan97x

      Posted

      Such a big exclusive club we are all in ! I have had ME more years than your age. Megan ! Well just about. 21years .

      I am housebound but try to make the most of what I have and can do. I have already written quite a lot in response to other questions on here so won't go into overdrive. Just noticed I wrote above too.

      Is good you can manage to get out with your friends and go to work Megan. Which is positive and I am certainly not insinuating lucky you or anything . so please don't think I am . I can see from the other things you say that you have been through the mill and continue to have struggles . just be very careful not to knock yourself off completely.

      Take care x

    • tracy47348
      tracy47348 megan97x

      Posted

      Gosh im so sorry that you are experiencing this at such a young age. I was 27 when i became ill and still have it 27 years later. I may suggest trying antivirals. Have you been tested for EBV, CMV or HHV6? They say they work better if started sooner. Im just now starting them out of desperation 27 years later. I should have done it years ago. Some people say they work and or have been cured on dr. Martin Lerners site. You could google it to read testimonies. Good luck.
    • janet71271
      janet71271 tracy47348

      Posted

      I have looked after children with ME. I was ill for seven years from age 12/13. Looking back my old endocrinologist believe I had ME then too. Eventually got better but it lay dormant and reappeared later due to overwhelming infections I had. The first being winter vomiting .
  • TO1210
    TO1210 EJO3089

    Posted

    Feel exactly the same. Diagnosed in August. Not been well for about 3 yrs. Tired easily, stopped socialising and doing things i enjoyed. Aches pains bloated heavy periods. Cant move by end of day. Too tired to go to bed. Shakes, restless legs, dont like noise. Do very little housework and meals only if i feel 'okish'. Finding it hard to accept that i have CFS but i must have it? What else could it be? Had blood tests. All ok other than my b12 low so on tablets. I seem to want it to be something else, something that can be cured but i know in order for me to get better i've got to accept this. I have not told anyone of my diagnosis (except hubby and mother). I think that is because it would then make it more real. I've been unwell for so long with not much help from gp i've looked into diet etc myself. Worked out a few foods i need to avoid and that seeems to have made my bloatedness better. I think for me to accept this i will have to discuss it with people friends and family so hopefully i will feel up to that soon.

    • janet71271
      janet71271 TO1210

      Posted

      Hi sorry to hear of your struggles too.

      Don't be afraid to discuss your concerns with family and close friends. It is not an easy disease to explain or for people to understand . especially if they have not known other people with it. It can be exhausting but better to put people in the picture.

      Unfortunately many GPs are not good regarding ME. Or CFS as they will call it. I was told yesterday by an ME friend who goes to the same surgery I do, that a new lady doctor there is showing a great interest in her ME. Taking bloods no other Dr has investigated before for her.

      I hope you can find some peace soon. X

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