Cfs or me suffers please help

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I’ve been ill for 3 years. It happened after the birth of my third child. I forever felt disorientated. Dizzy. Lack of balance. Tingling and numbness in my arms and legs. Had an mri as they thought it might be ms but tests come back clear. All my bloods come back fine but yet I still feel very unwell. I have been struggling with extreme fatigue for the past year. My body always aches. I constantly feel exhausted. Drowsy. Spaced out. Sensitive to light and noise. Easily aggravated. No motivation at all. I get so tired doing simple things. I could sleep all night and still feel exhausted. I have times in the day I can do simple tasks then periods in the day I come over extremely drowsy and feel like I’ve been drugged. Been told it’s cfs. I’m only 24 with 4 kids. I feel so suicidal. I. Can’t find any answers or someone to talk to that understands. Please anyone is this normal to feel like this for cfs. Can

Anyone please relate? Can only tell me how they feel with cfs. How they cope. Anything that helps. I feel so lost and alone xx

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  • Posted

    Hi courtney41257

    We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

    If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

    Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

    If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

    Kindest regards

    Patient

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  • Posted

    Hi Courtney, I'm no expert but i have a severe form of Cfs. I suggest you go see a neurologist and seek help. It's possible you have cfs. Hope this is of some help to you.

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    • Posted

      Thankyou. How do you cope with it. Do I have similar symptoms to you? I am looking for a personal day to day look into someone else’s life with it xx
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    • Posted

      Hi again, Courtney, Yes, similar symptoms.

      I suggest you get a diagnosis.My symptoms are severe exhaustion after things like having a shower, getting dressed.  Pain all over my body, severe pain, headaches, tummy pains, a feeling of being ill.  The tiredness does not go away with rest.  Please, I encourage you to get a diagnosis.

      There is no cure for this condition.  Some meds can help some people.  Not all will benefit from meds.  They do not know what causes CFS. They think a virus, but not sure.  Yes, I do not tolerate noisy places, too many lights, yippe yahoo stuff.  I need quiet and calm.  Your symtpoms sound familiar to me.  I do not have the numbness in arms or legs, but have the rest that you have described.  Like you described, you can do tasks and then crash, can go no more.  Please Courtney get a diagnosis.  I wish you all the best, and take care of yourself.  Get as much help as you can around the house with your family.  Only you know how you feel and do not let any one minimise your feelings.  They are real, they are your feelings.  I also have trouble sleeping.  Am not able to go into a deep sleep.  Hope this is of some assistance to you.

      Regards,

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  • Posted

    Sounds like you could also have POTS... look it up.. i have CFS and POTS also they tend to come together but the POTS isnt often identified until much later if at all. I have had both for over 25 years. Mine has improved over the years , but with relapses every 4 years or so, usually due to hormones/viral infections stress etc. I have managed to bring up 2 children as my worst symptoms started after the birth of my second child. 

    As for how you feel... CFS and POTS vary so widely from person to person but there are a core of symptoms that most get, many of which you have explained obove.  Yours sounds quite a severe case , you need to get some help from the doctor, explain how you are feeling and be really honest so they can get you the help and support you need for your mental health as well as the physical stuff. I too have felt like giving up at times as im sure many people with these illnesses have , but it was my kids that kept me going, and now they have grown up and left home , its my grandson that keeps me moving forward. You are not alone xxx

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  • Posted

    Hi courtney. 

    I dont come on here much at the minute but threw a notification email and read a few lines of what you had put melted my heart. 

    I had to reply. Every emotion and physical emotion youv said is the same for me too part from i only have one child your doing amazing having 4 let me tell you :-) 

    It gets lonely due to this illness being invisible to see, i wish people saw how we all felt every second of every day because it would not be an INVISIBLE illness to which some people dont have the time to actually look up what us people with CFS go threw. I hope reading that you are suicidal is just out of frustration and the loneliness as i say i wish i wasnt here but i dont mean it its anger. I get sick and tired of how i feel and how i will be smiling putting on a front because im scared to say i feel like s**t to alot of people as i no some think oh my gosh shut up woman. 

    Do you have family and friends who help you? 

    Just know your not alone hun.

    Take care 

    Zoe x

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    • Posted

      Thankyou zoe it’s nice to know I’m not alone. My kids are 6, 5,3 and 20 months. My mum is about and I have a partner but he doesn’t understand it. The kids Dad has nothing to do with the kids as he left me on my birthday for another woman so it’s a daily battle but I try to keep strong. I feel suicidal but won’t do anything my babies need me too much. I turned 25 a few days ago and I feel so sad my life will constantly be consumed by this. I wouldn’t wish this upon anyone Hun it’s truly horrible and debilitating. You lose sense of who you are. Even believe your crazy in some ways. No one sees it nor believes your ill. It feels like your already dead inside just existing in a breathing shell. Xxx

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    • Posted

      Hiya hun

      Gosh everyword i could say the same as uv just said . I always wish i met someone with CFS my age with my battles but everyone on here live completely out of reach. Wow ur doing AMAZING with them being so young. Dont think any partner understands just look at us like oh shut up moaning i often go silent now i actually cant be bothered to say oh this hurts or im feeling like crap cos of this this and this . My little ones dad has nothing to do with him either so again YOU ARE NOT ALONE :-) 

      And as for saying u believe sometimes ur going crazy.. me too lol but u no what for the past couple of months , iv done what ‘i’ want to do and what i feel im able to do i used to push myself so everyone and for first time iv put my own needs first :-) x

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  • Posted

    My apologises too iv re-read and realised you havent yet been diagnosed, honestly, mine started from day i had my son 9 years ago iv had every test possible and said since that day please help me i honestly knew i wasnt being over the top i knew my own body it took 8 years to be diagnosed with CFS/ME. 

    Im still thinking is it isnt it due to no test saying 100% yes i havent accepted it but more iv spoken about my illness to others with CFS more it is starting to make sense and understand a little more of the illness and to not worry what people think anymore as much when im ill i listen to my body alot more im only 28 i joke when anyone says what do you want for your 30th birthday my reply a zimmeframe hahaha . Dont get to that place where u feel you cant live speak up talk to people like who who understand it really does help this is no invisible illness its a real hard exhausting illness to live with Xx

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    • Posted

      Iv wrote to you before this message Its just waiting to be moderated for some reason 
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  • Posted

    Hi guys thanks for some advice. I had an Mri done 2 years ago and extensive bloods done and all clear. The doctor has put it down to cfs as there appears to be nothing else wrong. I’m scared as I don’t know how bad this will get. The worst for me is the lack of energy and major crashes in the day. Out of nowhere I’ll go extremely disorientated. Feel very drugged. Can’t function it’s so overwhelming but I’m that tired but can’t sleep. At night I come awake and struggle to sleep and wake up all hours. I could sleep all night and still feel exhausted I’m only up half an hour in the morning before I want to go back to bed. I don’t as I have to be up all day with the kids. Then up half the night with my youngest as he doesn’t sleep. The headaches are getting bad. The weakness of my limbs are affecting me. I just so out of it most the time. I’m scared I’ll end up bedbound and lose my children. I Thankyou you so kindly for your support and advice it means so much to me as I’m losing hope rapidly and spending my life in constant tears xxxxxx
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    • Posted

      Hello courtney, how you feeling 

      Dont spend ur life in constand tears hun , with CFS theres nothing really to just switch what we go threw off but you can slow down alot more maybe and coming on these forums really helps too due to family and family just not getting it :-)

      The lack of energy does me people really dont get it when i say oh im so tired or i constantly massarge my arms and hands lately as they feel like an elephant is sat on them lol not funny i know but keeping a little humour going keeps me going :-)

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    • Posted

      Hey Zoe thankyou for asking how I am. Struggling today Hun in a lot of pain and exhausted. How are you? I know we can’t do anything about it, I suppose in time as I adapt it will get easier . Finding the good out of a bad situation is always best xxx
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    • Posted

      Hiya hun.

      Im having a good day. This is why im on here replying and looking who i can cheer up or just talk to them so they are not alone. Iv been at work all day and always take an hour after to chat on here as on my bad days all i want is a reply . :-) bit of sympathy hehe.

      Is anyone looking after you while ur struggling. I hope so hun xx

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  • Posted

    Hi Courtney

    I am so sorry to hear that you are feeling so ill.

    I am going to get straight to the point...as you mention that your symptoms started after the birth of your baby.

    There is a condition called Sheehans Syndrome.  It affects the Pituitary Gland in the brain.  It can happen to women in childbirth.

    It took me 15years to get a diagnosis of Hypopituitarism which in my case is related to a severe closed head injury but Sheehans is similar.

    This situation is very rare and not many GPs know about it and I had to show my GP an article from the Daily M online....if you Google - CFS and Head injury it will come up with the article.

    I was recently diagnosed with Severe Growth Hormone Deficiency as my Pituitary no longer works properly the symptoms mimic CFS.

    The only way to get answers is to ask to see a Endocrinologist.

    I hope this helps

     

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    • Posted

      Hi Maureen I’m very sorry to hear of your I’ll health it’s never easy battling with such chronic conditions. I’ve never heard of it but I shall we sure to look into it. Thankyou very much for your advice and compassion I wish you the upmost luck xxx
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