Please help any m. Sufferers

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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 Courtney, I'm so sorry you are feeling this bad. I think the symptoms of CFS are very similar to those of MS. All the symptoms you are describing sound a lot like CFS/ME. If the doctor's have tested you for all the autoimmune diseases such as Lupus, Rheumatoid Arthritis, and MS, then I think you can conclude that your symptoms are due to CFS. It's not easy to cope and accept. I was diagnosed in my early 30s and have lived with it for 25 years. 

    Somehow, I managed to give birth to my wonderful daughter, even though I was sick. I also managed to raise her. I found that pacing myself was the key to feeling better. Do what you can and then rest in between. Luckily I had an understanding spouse who helped a lot when I was having a bad day. It's also important to get the right kind of sleep (meaning REM sleep). Sleeping 10 hours a night and still feeling unrested is very common. 

    I've had times where I felt better and have experienced bouts where I feel worse. Try to stay positive. If you can, I would find a therapist to talk to....Trust me. You need someone who you can be honest with-someone who understands what you are going through. 

    Light to moderate exercise used to help me, but I had to build it up gradually. Many enjoy yoga. Meditation also helps many. But pacing is the key to getting better along with proper sleep. I take Doxepin-a tricyclic anti-depressant that helps promote REM sleep. Good luck and please try to stay hopeful. You are still very young, so you have a good chance of getting better if you take care of yourself now! Karen

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  • Posted

    It does sound very much like cfs but I was diagnosed as having cfs but later found to be non celiac gluten intolerant. Symptoms very much similar to yours. Someone else on this forum was found to be dairy intolerant. Please get checked out . I was years before I found a doctor who realized what was wrong with me. Good luck.
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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

    Hi Courtney,

    Don't despair, I too have four children although mine are older than yours. I too have tormented myself with worrying about what will happen to my youngest if I get any worse. They are on the waiting list to be tested for aspergers and have struggled school wise and so there were meetings with family services etc. The extra pressure was difficult to deal with but, you need to settle your worries by asking family and friends for as much help as they can manage. Being well supported is good for you and the children. Is there someone could come and watch them while you rest or help clean up for you? My CFS/ME is from a car accident and so I also have a back problem. It took me ages but, I finally employed a cleaner, I got the kids to do it as well just needed to feel it was getting done properly. Get the children involved, set up a mini rota if they're old enough to follow it.

    What you eat seems important with CFS/ME. It can be hard to eat well when you don't have the energy to do things from scratch but, again get thge children involved if you can or but easy stuff like tinned soup for when you feel you really aren't up to it. Eat as well as you can. Knock coffee on the head and sugary snacks as they give a false boost and zap your energy later.

    Rest when you can and be gentle on yourself: non of us expected to get this condition and all of us struggle at different times with how it  manifests itself. Having low mood sometimes is very common and it can feel a very lonely. You're not alone on here. There are plenty of people who understand and can give you decent help and advice. 

    Hope that helps

    Beverley

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    • Posted

      I’m so very sorry Beverly you have also struggled with this condition aswell as battle with being a mother. I worry as mine are so small and very dependant upon me. It sounds like you and your children have had a really tough time dealing with this. My mum helps me out abit but I hate to burden others. She still has to work and at her age it’s not fair putting my kids on her all the time. I noticed diet seems to be a positive factor amongst most with cfs. I need to look into pacing and the dietary information. I don’t drink coffee anymore have it up when I gave up smoking. I don’t eat often anyway but sugary snacks are on the menu when I do so I need to stop that.  Rest is hard for me as you can imagine it’s mainly the ongoing stress and sleepless nights that get to me. Thankyou so much for your support and kindness Beverly xxx
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    • Posted

      Hi Courtney,

      I know what you mean about the children depending on you but they can be a real help if you can get them into it. Especially if they see it as a game. I don't know how old your eldest is? Kids are great at moving things about like washing etc. It's like they like to help! Ask them which bits they like doing. Offer them things in exchange: don't know if you do pocket money/rewards for good behaviour, or extra time doing something.  It might take sometime to get used to but could really help.

      I just did far too much this weekend and are having to rest in bed. It used to make me feel so guilty but, the kids don't mind, it was me just  over thinking it. Sometimes you just have to let go of what you think is a good mum and replace it with you are still a good mum even though you're not well. 

      Beverley

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  • Posted

    HI Courtney, I can very much relate and it’s like reading my own post as you describe how I feel. I am 32 and a mum of 3 and feel most days I can’t cope and it’s just awful living like it. 

    I have only recently been diagnosed and also need advice, especially on how to deal with the fatigue and spaced out, not with it feeling! It frightens me and hate living like this. I’m here if you need to talk 

    Take care

    Lisa 

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