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
lexilou32 EJO3089
Posted
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.
EJO3089 lexilou32
Posted
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
janet71271 EJO3089
Posted
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
LyLy EJO3089
Posted
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.
janet71271 EJO3089
Posted
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
janet71271 EJO3089
Posted
EJO3089 janet71271
Posted
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?!
janet71271 EJO3089
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Sometimes various tests can show something but not enough to be of any concern. Confusing I know ! X
EJO3089 janet71271
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Very confusing! Ive had so many tests over the last few years..my gp has been pretty thorough to be fair. but sometimes I feel like I need to be retested (brain mri for example) due to the wooziness as I keep thinking 'what if somethings changed since they last did it in 2015'?! Crazy I know but guess I'm just desperate for something to show in a test that can be treated!
janet71271 EJO3089
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I had the 7 day monitor a few years ago. Called A test. Unfortunately the machine had a fault so i had to keep it going for another week ! X
jan96753 EJO3089
Posted
hi there, I am recently diagnosed with chronic fatigue and I am really struggling with the word chronic, I also feel that now I have this diagnosis that it is not a true diagnosis it is just a description of my symptoms , it does not address the possible cause , I have had MRI head and spine, CT Abdo and chest and a pretty comprehensive range of blood tests, all within normal ranges. I have numbness in left foot and outer thigh tingling in the leg and left arm fizzy feeling and debilitating fatigue I cannot work at the moment. I feel like I have been hijacked and the real me has vanished. I too am trying desperately to be proactive with diet and pacing myself, some days are better than others not always any rhyme or reason to it. I also get nausea, my gluten tests came back negative. I have lost 13 kg in the last 2 months. I dont drink or smoke , I am a registered nurse and have a very good job, just hope i can hold on to it. I'm so sorry you are struggling to come to terms with it , I can sympathise , it sucks . I am however determined that this will not become my future and I will find me somewhere in this fog. I hope you have plenty of supports.
janet71271 jan96753
Posted
Sorry to hear you are struggling with your diagnosis. I had to take early ill health retirement from nursing . 20 yrs ago after a year off sick. And started being unwell nearly a year before that.I had a very good job too.
CFS/ME is a diagnosis of elimination. But it is still a diagnosis because it is a really disease. As a nurse you already know what syndrome means. A collection of symptoms . there are many different syndromes . also there is no real 100% known cause for CFS/ME making it difficult to address an actual concrete cause. Personally I had repeated infections over several months which shattered my immune system and my body gradually gave up. Some people have a very quick onset of symptoms with no previous illness, infection etc .some believe it was caused by stress. Some by vaccinations. Glandular fever often brings on a post viral fatigue that eventually eases and they recover. But some go onto to have chronic fatigue syndrome.
I too tried to fight my health issues and carried on working but it didn't to any good at all in the end.all it served to do was exacerbate my difficulties which in turn no doubt impeded me improving. I did not give up nursing lightly but had to in the end. And I have never accepted it or got over it. But I had to come to terms with it.
I think if you can try to come to terms with your diagnosis it will help you . if you think you need more investigating , go for it. All manner of things might still come up .
I hope you can eventually feel better. But for now try to make some peace with your diagnosis in order to move forward best you can. I do understand how you must be feeling .Take care .
s47448 EJO3089
Posted
Hi. I have had m.e for 4/5 years (Diagnosed by m.e specialist) many symptoms and one of them being high heart rate, palpitations and anxiety. I took a food intolerance test and found i'm highly intolerant to cows milk. I had done the food diary thing, given up gluten, sugar, ate clean although didnt have signs of bad stomach, guts bowels etc. Iv now been free of cows milk for 6 months and my "M.E" has gone! And after 4 years of a crippling illness which halted every aspect of my life I am still feeling this relief and wanting to share with as many people as possible. My nutritionalist told me that she has a lot of people with food intolerances that manifests itself as the mystery illness of M.E because food intolerance can cause complex symptoms that get worse the more your body has to fight it. I'd love to know if the M.E researchers have explored this fact.
tracy47348 s47448
Posted
s47448 tracy47348
Posted
I just paid for a private blood test it covered 120 food types approx but I I'm intolerant to other things aswel not just cows milk - vanilla, coconut, which I would never have been able to work out myself trial and error. Or maybe speak to doctor for nhs testing or equivaIent in different countries. I was just suggesting it may be worth people with m.e to explore this intolerance measure and not waste too much energy (which they haven't got) trying restrictive diets/food diaries etc on their own that lead nowhere as I did for a year prior to tests.