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.
It could be POTS -orthastatic hypotension making you dizzy or shaky. A lot of ME people have this. Have they checked your blood pressure when laying/sitting then standing? I have it and have to lay down alot when my heart gets exerted. (Pressure also) Also the Epstein Barr virus plays havoc on me. Have you been tested for that? Doesnt sound like yours started with a bad flu like mine did 27 years ago.
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!
Hi ...so sorry to read all this.
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
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
yes - had symptoms since I was 16 (now 27) however they were spread out, put this down to my exams tiring me out/hormones/being a general teenager as did mum. Came off gluten after seeing a nutritionist, every blood test has come back fine, I've seen a gynecologist as was convinced the symptoms were hormone related and wanted to see if a different type of pill would solve things (If only!!) I only started the pill to try to regulate hormones as my emotions where all over the place (not sexually active), GP gave me standard everyday one they give to everyone, this made me worse so went private and was given 'Yasmin' which has massively helped with the emtional side (no longer burst into tears randomly, or have mood swings) however all the other symptoms persisted and got worse to the point Im not working, signed off, and got a refferal to the M.E clinic.
I had burried my head in the sand in regards to even considering chronic fatigue as just didnt want to face this, and was hoping if i just ignored the symptoms, they'd go away. In fact doing this makes it worse.
I can no longer drive, I've had to move back in with my mum having lived on my own fully independent for 8 years, Im in a wheelchair if I want to go any distance as find walking/processing the world extremely challenging at the moment - I was previously going to the gym 4 times a week, going out with friends every weekend, a key member of my team in work ect. It's mentally been so so difficult to accept because it's changed my life.
Sorry to hear you've suffered too. Truly is a confusing and frustrating illness if that's what it is! Feel sometimes I take a step forward then two steps back. Very difficult to explain how I'm feeling..my husband is great but thinks positive thinking will snap me out of it ..I wish it was that simple. I've taken all the steps I can to overcome this myself. Paid for councelling, seen a nutritionist, tried yoga etc.
Just finding it scary when it feels my body is shutting down like I need to go to dr/hospital but all tests are normal
Hi, I'm sorry you are going through this, your symptoms match my symptoms except for the heavy irregular bleeding and low iron. I've had all the tests you had and all came back normal. But still feel so unwell and unbalanced.
I was like you healthy, fit and normal in my thirties too. One day everything changed and I still can't accept how horrible and unwell I feel and labs still coming back within range. I am dumbfounded with this illness.
I know some do get better, so that gives me hope. Unfortunately doctors don't really understand cfs either. They either will give you pain, sleep or antidepressant meds to help or cover up the symptoms.
It's only been over a year for me and it's been ups and down but now my energy is declining, I guess they call it a crash. It's been rough I'm not going to lie, I have more bad days than good.
I pray everyday just to get through and remind myself that my body is renewing itself and just to be patient. It is overehelming at times and I've broken down many times. It's a process, this illness is unforgiving. I'm trying to learn to manage and live with it.
I wish you well.
Hi
Has your irregular heart beat been investigated ? I was found to have atrial fibrillation. And it does need to be treated with medication .
I disagree brendi. This lady has several symptoms that suggest CFS/ME. Her gynae problems might not be related but having said that some ladies with CFS/ME do have gynae problems exacerbated by it. X
Hi again Ruthy
Hope you are not too bad today x
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
My diagnosis was because I went with fatigue, hot flushes and irregular periods thinking it was early menopause. After bloods, scans and urine tests the Dr says the stress from the ME/CFS is most likely causing my period issues
That is the problem with CFS/ME. You never know if you are doing or going with it. Drives you nuts trying to figure it out. It is nigh on impossible to even try to explain how you feel to someone who doesn't have a clue what it feels like. I would say all of us responding here have a pretty good ideas how you feel. So you are among likeminded people.
Trying to maintain calm and some positivity is helpful as stress and worry are no friend of this disease. Just makes everything worse as it weakens your body even more. Don't take any notice of people who say things like pull yourself together . or oh I get tired . no it is nothing like the fatigue of CFS/ME. I know you are still unsure of the diagnosis given to you. But it does sound very familiar ! The problem is blood tests etc will come back on the whole normal. CFS is the diagnosis of elimination . no specific recognised tests as yet. But they are working on it.
Patience is vital as this is not a brief passing thing. Unfortunately it can be a long haul for even more mildly affected until they start to improve. And some say they get better. Alas some appear to never be getting any better. I have had this for 21 years and have gradually deteriorated even further. Especially the past few years. I , like many am housebound. My life totally changed . I had to leave nursing which was devastating.
In the early years especially, we mourn for the life we have lost. So it is perfectly understandable to feel lost and like your body and life around you is imploding This can continue as time goes on when there is no improvement with symptoms . And at this time there is no known actual cure. A variety of things offered to help but not everything suits everyone . not everything helps and some things can make symptoms even worse. Like the graded exercise programme . it is not the cure as many GPs seem to think. Quite the opposite in many cases.
Is hard amid everything feeling so down and negative, but try to be positive as much as you can . make the most of the little things. Focus on things you feel up to doing rather than things you can't do as you did. Frustration can be as bad as the nasty symptoms ! Try to be patient and take each day as it comes . and you will always find people here to listen and empathise and share experiences be them good or bad . I hope you can find some peace and feel a little better soon . take care x
I was several years into ME when my ferritin levels were found to be very low. Treated to bring up to a more acceptable level. I didn't feel any better though. I was also out on double dose of zinc along with the iron tablets. Again made me feel no better. Previously to al! That I was instructed to take high strength GLA and hypoallergenic vitamins and minerals. After taking them for s few at s with no improvement, I was told not to bother with them. Oral magnesium helps some but i couldn't tolerate it . I persevered for a good while but it was really was not worth it. Magnesium injections made a small improvement , but I had to stop that too after a bit .x
Have you been tested for Lyme disease ? X
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
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
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
I have been tested for lymes yes about a year ago - was told something showed as positive or inconclusive but that it didn't mean I had it and that overall it was still negative?!