CFS symptoms

I had CFS very bad for the last 7 years. I never slept at night at all for all those but wanted to sleep early hours of the morning and could sleep until 3pm in tad afternoon. Then fir the rest of the day I would wake up a little more until bed time when I was wide awake.  It totally took over my life, no future to even think of. It done a lot of damage to my marriage and my family.  You have probably noticed that I have been talking in the past tense. Yes I have and that's because I started looking at medications that I was taking and pinpointed it to one of them, more or less to the day I started this particular medication. I stopped taking it with immediate effect. From that day my life turned around, I started sleeping that very night. That was only 2 weeks ago and everything has changed and still improving. I now feel I have a future. 

Can an I ask you if you are on any medications, especially for pain relief and if so can I ask what they are? 

Katie

Hi David

Yes I have similar starts to my day... You awake but your unable to move and gradually you get the use of your limbs back, its kind of like an old car trying to start up on a cold and icy morning and needing a bump start...

I avoid the panic mode my brain tries to put me in every morning as it slows down the process of getting out of bed. Family think your just having an extra 5 min’s lie in as you don’t want to get up, but it couldn’t be further from the truth.

My wife now has to assist me every morning to get up and going and 20 years on from when I first developed ME it’s far worst. Like you say, I'm at my best around the mid-day mark before the fatigue starts to take over again. If I do not take, regular rest ups during the day I am exhausted by 5pm and unable to walk & unable or drive etc.

I have to be fully stopped way before 9pm otherwise I just do not sleep at all and have to have meds to get to sleep ( due to twitching and restless arms and legs all the normal ME stuff) stopping before 8pm is even better but you tend not to have a quality of life at all. I have days when I have to catch up and I will sleep 20 hours quite easily, I find you have to balance your life very carefully especially if you have kids etc. I tend to do what I have to; I never have enough energy to do everything I would want to, if that makes sense. You have to decide what each hour/day I need to achieve and adjust the day accordingly. When I am tired, I tend to bump in to stuff, and fall over banging my head or similar so I know I’m well past my energy levels need to function, my wife normally sees the telltale signs before this and makes me stop and rest.

It is very important to stay focused and positive otherwise, it’s a very dark place you can descend to and that’s not fun for anybody especially loved ones who tend to suffer also.

I have seen immunologists and neurologists and had countless scans and blood tests over the years, and have been told on several occasions it’s currently an untreatable incurable condition, which sucks like hell… The symptoms can be similar to MS but they just don’t know how to effectively treat ME/CFS. I have tried all different treatments and none has really worked over the past 20 years however, I find pacing and some graded exercise can help if I’m feeling Ok but if I’m not it just makes me ill.

I hope my reply is of some use to you and other who read it... 

 

Has anyone tried homeopathy ? I knew one woman from the local pool, when i was well, who got ME, she recovered 80% aftyer 2 years and said the only thing that helped her was homeopathy.

Hi David,

You could be describing me and my life generally.  I am now 7 years ill and I can pretty much anticipate how I will feel depending on what I do.  Mornings are bad.  I wake and often feel dizzy, nauseated and very weak.  I also have a lot of pain.  I know that I can't wake and get up immediately.  I get some help after a wee while to go to the loo and then back to bed for a while till my body comes around.  The rest is pretty much what you and others have said.  I sleep some days for 18 hours as though I need to replenish the energy bank.  I try to pace but life doesn't always allow that.  I haven't worked regularly since becoming ill.  I have tried a couple of part time jobs but just couldn't cope after a while....I mean physically and they weren't 'physical' jobs.  However I am now considering work again.  I really need to financially and socially but also need to know that I won't make myself really ill doing it.  I have found a local job which is afternoon to early evening on 3 non-consecutive days.  This, in my experience, would be manageable I think.  Keep fingers crossed for me.

I have also seen many doctors from immunologists to neurologists to rheumatologists and psychiatrists.  It is pretty much what dragontest says - so far ME/CFS is incurable.  However, I have found out about a trial about to take place in London for RITUXIMAB.  There have been some successful trials using this drug in Norway and the ME Association has raised funds (£350,000) to run similar trials in the UK.  This is the most promising thing I have heard of since becoming ill and I am keeping my fingers crossed that it will be successful.  Unfortunately the drug is very expensive though, in our favour, only two or three injections are required over a period of a few weeks.  Currently this drug is prescribed in the UK for rheumatoid arthritis so it has already been approved by NICE.  Keep your fingers crossed for this and do try, meanwhile, to accept your limitations, and make as much of your life as you can within them.  I know it is difficult.  We all go through a grieving process for the life and person we have lost.  Hopefully some medical assistance will be forthcoming in the near future.  Keep coming back here - we all, at least, understand what your are experiencing and you may get some useful advice or information.

Linda

Just going to throw these two things out there as possible natural treatments.

CARNIVORA and pine cone extract (immunophen). Anyoen tried them, heard of them ?

Sorry .....the charity involved in Rituximab trial is not ME Association but Invest in ME.  The funding has been raised by them and sufferers like us.

You describe my pattern. I struggle every morning to get out of bed. Am at my worst in the morning. Sometimes I start feeling better in the evening. When I was first diagnosed, this pattern was very strong. I would feel so much better at the day progressed that I could go out and do normal stuff. I have't heard of seeing an immunologist for ME/CFS. Typically,  infectious disease specialists or rheymatologists are knowledgeable about this illness.