Newly diagnosed but finding it hard to come to terms with it. Can anyone else relate?
Posted , 14 users are following.
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'
. 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
tracy47348 EJO3089
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EJO3089 tracy47348
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POTS has been mentioned yes. Blood pressure always normal when theyve checked in surgery but I have a home monitor I've used at times and has been high ocassionally. Can often feel my pulse is irregular and fast heart beat at times even with minimal exertion. I'm due to have a 7 day hotel at the end of the month the gp suggested I have that before investigating POTS further..and seemed hesitant as she said they don't do much for it anyway?! I do feel I need some definite answers tho and not just keep guessing what's wrong!
janet71271 EJO3089
Posted
Has your irregular heart beat been investigated ? I was found to have atrial fibrillation. And it does need to be treated with medication .
EJO3089 janet71271
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In my 24 holter test they said I had some ectopic beats but not concerning. This was in 2015 though (also had echocardiogram and ecg in Oct 2016 which was okay).
Never had the symptoms when having an ecg though so obvs they can't see what I'm feeling. I'm actually hoping for the symptoms to happen again during my 7 day test so they can tell me what it is!
Worse during period. .and sometimes after eating/drinking but can't find a pattern otherwise
Guest EJO3089
Posted
I have superventricular eptopic they found it after I started collapsing and passing out at work about 6 years ago. I've only just been diagnosed with ME/CFS though so haven't made a connection between the 2.
My ecg also always look fine but I had 2 occasions of wearing a monitor. 1 was for just 24 hours and the other was for a few days, they were different as one monitored all the time and the other I had to press a button if I felt it coming on. They had ME on propranalol for a while but I was like a zombie so I don't take anything now.
I'm sure the 7 day test will show something for you xx
Brendi EJO3089
Posted
On first reading tho...it doesnt sound like m.e....
Perhaps only cuple of the symptoms.
Try looking up on Google
NHS... SYMPTOMS M.E.
AND COMPARE.
Brendi
X
janet71271 Brendi
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Guest janet71271
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EJO3089 Brendi
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As Janet has mentioned the consultant who diagnosed me confirmed many of these symptoms are related to ME..although fatigue seems to be the main severe symptom for many (not in my case though). It was he who suggested the period issues and iron deficiency is a separate issue and thinks my issues each month triggers my ME symptom's making me feel worse. That's his theory anyway - that's why I think I need to see gyn and try and control my hormonal/period issues somehow..hopefully it will illeviate some other symptoms!
janet71271 EJO3089
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Guest EJO3089
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Hi EJO yes I totally understand where you're coming from. I've only just been diagnosed too and actually convinced I was going through menopause early. My periods are either nothing for 4 months or 3 a month so that and the absolute fatigue and hot sweats I thought that's what was wrong. My tests started with a hormone test which came back fine and doctors saying I wasn't going through the change. I've also had ultrasound scans due to bloating and also to check my womb etc. Again all fine. Long story short after testing me for every disease known to man I was told I have ME/CFS and my response to my Dr was to ask if I was allergic to cheese lol. Was in shock, denial and very emotional. He said that my body is under so much stress it's upsetting my normal menstrual cycle. The symptoms I have put down to other things all make sense now. Sore throat, breathless, dizzy, shakes, headaches, body aches, pains and heaviness like flu, bloated and ibs, blurred eyes like i have vaseline in them, cough, sinus cold. I cant remember what someone just said to me but i know what i did when i was 3 years old. My worst one is the fact I am always exhausted, no matter how much sleep or rest I get I always feel absolutely wiped out.
If it makes you feel any better I am only 40 and thought life was supposed to begin at 40. I've gone through every emotion from crying to anger to blame and back to denial but now I have accepted that this is how I am. Before I was diagnosed I have managed to work so I shall keep on doing so but I've realised I need to balance the work and rest. Before I was diagnosed I cut my hours to part time because I couldn't cope full time, I had sepsis so my boss was very understanding.
I don't think diet makes any difference unless you have allergies. I try to eat a good balanced diet. Fruit, veg, etc but I do have a really sweet tooth recently which my Dr has told me not to eat too much sweet things due to sugar crash. May be try eating what you fancy. Your body knows what it wants to eat so eat what it tells you and see how you feel. Try not to worry about the ME because it's bad enough having it without having anxiety too. Be kind to yourself and make sure you make time for you to relax and rest x
janet71271 Guest
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Hope you are not too bad today x
Guest janet71271
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Hi Janet I have had the worst couple of days after going on my works doo. Even though I was really sensible on friday night on Sunday I actually don't know how I got through work and Monday I fell asleep at my desk. Today my day off has been a total right off i feel like ive been hit by a bus but behaved and rested lol. It's my own fault and knew I'd end up making myself like this but hey ho I still haven't got it in my head that I can't do it lol. How are you Janet good day? Bad day? Xx
janet71271 Guest
Posted
You know this already, but you really do need to take things easier Ruthy. You read my story how I carried on working then virtually collapsed at work. Pushing too hard can end in disaster like it did for me . And others.
I can't remember if you work full time ? If so would you not consider at least part time. . Best thing would be a stretch of sick leave completely . After that you would be more able to assess the situation .
My pain is much worse than normal . And it is always not minimal. I have a high pain threshold so when it gets to me I know it must be really bad. To the point I could have thrown up with it today.
I hope tomorrow is a bit easier for you. Don't work too hard. Take care x
Guest janet71271
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Hi Janet in sorry to hear you're in such pain. I can related to the pain threshold because I've always had chronic pain in my back since I was born so I know when I can't handle the pain it must be bad.
I'm finding it really hard to adjust, in my head I feel like just because I've been diagnosed it shouldn't change anything as I've managed to work (part time) for over a year feeling like this. The diagnosis should just help me manage it better. I need to stop drinking so much coffee but its the only think that keeps me going and get me through the day at the moment. After all the festivities are over I will reassess and behave myself. I'm currently on my days off so resting and more resting. Thank you for your help Janet I really do appreciate it. Hope you're feeling better today than yesterday lovely xx
janet71271 Guest
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Good thinking to reassess after Christmas. Maybe start a new year as you mean to carry on. Because you have managed the past year to carry on as you are doesn't mean it is how it has got to be. You will likely burn yourself out in the end. Resulting in ending up much worse than you might have done. Just speaking from experience !
Take care and enjoy your days off relaxing . X
Guest janet71271
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I need to reassess as people have started noticing my shakes and I fell asleep at work on Monday. Over the past few months people tell me how tired I look and pale. Really wow I look tired... fancy that eh lol.
I have so many commitments in December (for the old me it's about 4 days but will take me the most of December now lol) and it's my son's birthday too so just got to keep going and then January I will learn to say no and look after myself more.
I do value your advice Janet as you have probably tried and tested every way possible over the last 21 years and you know what you're talking about and I'm still in bed relaxing today. Thanks again you're a star xx
janet71271 Guest
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Oh it does sound you have reached the point where you need to stop. I think I old you how I virtually collapsed at work one day and my colleague thought I was dead ! Like with you others noticed I was not my usual self and looked pale and exhausted.
When is your son's birthday ? Is mine next Monday !
Is my pleasure to offer you some support Ruthy. Take care x
Guest janet71271
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Yeah people certainly noticed Sunday and Monday and all because I went out for 5 hours Friday.
His birthday is the 16th which is the Saturday then I am going to a boxing fight he has on the 17th for cancer research, working Monday and Tuesday then family wedding Wednesday.... not sure how I will actually make it but I either will or won't. My auntie who is a reiki master will be there so I'm hoping she will hold me up.
I will be so glad when December is over and I can just hibernate lol xx
janet71271 Guest
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Guest janet71271
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Hi Janet sorry for delay in replying I didn't see the email notification. Absolutely crashed again today. Managed to book Monday off to give me 3 days off in a row before the craziness begins. Have a ultrasound scan on my liver and kidneys on Monday but least after that I can do nothing.
How are you? Hope you're having an up day today xx
janet71271 Guest
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Good you have a few days off so make sure you take it easy before all the activity. Hope all goes well with the scan. Try not to worry about it.
I am wracked with pain and the usual nasty fatigue. Been trying to get a card done for my next-door neighbour as their dog died last week. Really struggled though .hope to finish today.
Have as good a day as you can .take care x
Guest janet71271
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Aww Janet I hope you get your card finished too. Sorry to hear you're not good. I've woken up worse than I was last night and feeling the impending doom of a 7 hour shift ahead of me. Today is not a good day. Hope it improves for us both. Take care lovely xx