CFS how is it diagnosed? My marriage is suffering!!

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I think I may have CFS. I feel like my body cannot function AT ALL! I don't go out the house often and when I do, I suffer for days after. I feel like my body and brain are on shutdown like I'm not really a part of this world. I haven't even been able to take my children to school for months, one school trip 5 minutes away can result in me not even having the energy to walk to the kitchen for a drink or go the toilet for days after (resulting in numerous uti's). I am currently on the waiting list for an appointment with a neurologist (huge waiting list in my area). My question is how do they diagnose CFS? And also, how do I get my husband to understand how I am feeling? We are having a really bad time in our marriage at the moment with him thinking I'm faking it or exaggerating it? Did anyone else's relationship get better after diagnosis?

Thanks

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  • Posted

    My Gp diagnosed me... I had been having chronic issues for years and at one point was diagnosed with an anxiety disorder.  Yes i did have anxiety but it was due to the fact i was so ill and struggling to live day to day.  It took me 15 years of back and forth before i got diagnosed and then it was only after yet another collapse that caused a whole new batch of symptoms . They need to rule out everything else first before you get a CFS diagnosis and then you have to have been symptomatic for a minimum of 6 months to go from chronic fatigue to chronic fatigue syndrome, they are not the same. You can suffer from a period of chronic fatigue after a viral infection flu.. injury etc.. and this will resolve within 6 - 12 months by itself.  My kids where young too when i ended up house bound and had to have taxis etc to get them to school .  I guess i was supper active before it all kicked off so mu husband new it must have been something serious to put me in such a state but it did still cause a strain on our marriage. My kids are grown now and have left home with kids of their own... i got through it somehow... not sure how but i did.

    I had the same GP throught the 16 years so he was fully aware of my problems and history and i think he finally just put 2 and 2 together.  I was also diagnosed with Hyper POts last year too which i belive was the main cause behind my CFS.

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  • Posted

    Hi Rebeka,

    I'm so sorry to hear that you have going though this. CFS can rob your life of the many simple joys that we often take for granted. I hope that you can get a diagnosis pretty soon. Hopefully that will help your husband understand what you are going though. 

    In the meantime, I would try to find some videos of people (maybe some professionals) talking about CFS and the symptoms associated with it, so that your husband can hear it from someone other than you. You could also try giving him some literature to read on the topic. I hope this helps him to understand. 

    My heart goes out to you. Good luck! Karen

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  • Posted

    Hi, Rebeka--I'm so sorry you're having these symptoms. What you describe--getting ill and fatigued after any exertion--sounds a lot like Post-Exertional Malaise (PEM), which is a huge red flag for ME. I was diagnosed by first getting a complete blood panel from my primary care physician. It came back normal. As a result, he said my symptoms were "all in my head," which is a typical doctor response. I'd done some research about ME/CFS, and thought that's what I could have. So I next went to a specialist in this field at UCLA. He diagnosed me within about 20 minutes. First, he looked at all the previous bloodwork; then he asked me a series of questions. This was only 3 months into my illness. The common wisdom at that time was that you had to have the symptoms for at least 6 months to be diagnosed. But this doctor said he was absolutely sure I had ME/CFS, and he was right. There's a lot of information you can get about ME/CFS on the Internet, I recommend the "solve ME/CFS initiative" website. One way to help your husband understand is to print out some of the information on this, or other, websites that describe the symptoms you're experiencing. When he sees these symptoms described by medical professionals, he might take them more seriously. In particular, on the website I mentioned, there's a section on "humans of ME/CFS," where people describe their personal situations. This illness can be very difficult on a relationship. I've been married for 34 years. I was diagnosed after 15 years of marriage. My husband has been very supportive and never questioned my illness. But I think that was because I had such an acute and serious onset, and was diagnosed rather quickly. Still, I have difficult times when I feel very lonely, as he often goes out for music festivals and other social activities. Yesterday was the 4th of July here in the U.S., and I was alone all day, in tears part of the time. If you are diagnosed with ME/CFS, take it very easy, pace yourself, and don't push beyond your energy envelope, or you can make yourself worse. People can recover from this illness. 

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  • Posted

    Hi Rebeka,

    I guess the first question is where do you live as there are different ways to find out if it is CFS/me in different parts of the world. I'm in the UK and as Jackie says, you have to have symptoms for a few months before the next step here. Blood tests are taken and if they come back OK your doctor can refer you to a specialist CFS/me clinic where you will be asked questions about symptoms etc. They will write a report and you and your GP will get a copy. There's not a true diagnosis as such just that the symptoms without a different cause are down to this condition.

    In regards relationships getting better, I 'd like to say yes but, it depends on your partner as no one without the condition sees how horrible it is. There are lots of stories on the internet, one by a reporter with it which I sent to my partner. I have sent them many articles and don't feel they get it at all. I'm still expected to cook when they come over and when we went on what could have been a lovely holiday in Paris he was quite mean when I just about collapsed because he'd made me walk too long. I was in pain and walking like I was wearing callipers, no empathy at all! It's bad enough feeling this bad without being judged as making it all up as well. Knowledge is power so show your partner as much information about the condition as you can. Hopefully they'll "get it" and ease up on the judgements.

    There's the ME association over here that I joined and they send out regular magazines and information. You can get a booklet for family and friends to help them understand the condition too. I know I got one from the CFS/me clinic.

    Regarding the children, try not to feel guilty about not being able to do things right now. I have four children with only the youngest still at school. It is a constant struggle to balance things as I do too much and then need their support. It has taken me 3 years to be able to ask for them to help more and not feel bad about it. I had to employ a cleaner too.

    Good luck

    Beverley

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    • Posted

      Hi I am in the same boat and from the UK. I have been suffering from CFS symptoms for several years, they subsided for a while and now the symptoms are back and more severe. I went to my GP in Jan because I had felt very unwell since October. I have had bloods which came back normal apart from a Vit D and folic acid deficiency. I have been treated for this. Also has several heart tests and monitors, all normal. My GP has ordered a glandular fever test but I don't have symptoms of GF. He printed me off information from this site about CFS and asked me to look through it and make a follow up appointment. My symptoms are all their, dizziness, tiredness, muscle twitches, muscle aches and body aches to list a few. I am not sure if I have a diagnosis or its in progress. The GP wasn't clear. He said to look at the information to see if treatment was required? Has anyone in the UK had GET or CBT?

      My partner and family think it's just tiredness but it's so much more than that. I wish they would all understand that I can't just suck it up and push through. Every time I try to push through I suffer for days on end.

      Very horrible illness even the name CFS makes people think you are just shattered as many folk have said to me.

      It's a very isolating condition.

      Hope everyone is having a good day.

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  • Posted

    I've found a Cfs specialist at St Heliers with a form to download.... Drs can diagnose by you fitting the criteria and running blood tests specified by them ,  once they come back normal Your Dr can give you a ME/Cfs diagnosis... Search the internet for NHS Cfs specialists. Hope you find one not too far from your area. 

    I got my Husband to watch the Unrest documentary film by Jennifer Brea helped him to have a better understanding of our illness. Keep the faith ... Also Cfs unraveled on YouTube as lots of positive recovery stories... Stay open minded. All the best on your Journey xxxx

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  • Posted

    I am really sorry about your situation. I understand it well. I have had ME/FM since age 16 (46 now) and I have thee young children. Although my husband is amazingly concerned, sweet and understanding, this illness and all the times that he needs to step in for me when I have a fibro attack, are having a toll on him. He certainly does not believe I fake any of my symptoms, but he finds it hard ti understand the extend of them. It is, after all, very hard for others to imagine our suffering, when we basically do not look ill at all. Let him see videos of people who explains how it is to live with FM or CFS and let him read some threads that may shed some light on how so many others go through the same. That may help. You husband may also need counseling or may be a couple therapy. This illness is a life changer and our partners not only need to learn how to support or understand us, but they may suffer to for all the implications our illness have in their lives and in the marriage. And yes, a diagnosis is always a great relief. It will be of great reassurance to you and it may help your husband to understand your condition a bit better. Much luck! 
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