Monday, July 12, 2010

This is better, but that is worse ....

It’s kind of the middle of the year so I thought I would just review how I am going in a general way. Firstly I can say that in the last 6 months my symptoms have been constantly changing. The thing that was initially my biggest problem was malaise, I’d wake up with it and go to bed with it. Every muscle in my body was just sore and icky. Now the malaise is really only present the day after I have done something. It doesn’t take much to trigger it off, if I do some laundry, wash up dishes and walk to the mail box all on the same day then I will usually have malaise the next day. I have seen a gradual but steady decrease in brain fog. I used to seem to just have it at a moderate level all day whereas now I only get it when my senses are assaulted, such as if I have a visitor who bombards me with questions etc. My level of muscle weakness I don’t think has really altered, I am pretty weak most of the time. Dizzyness/Orthostatic Intolerance has become my biggest issue. Initially I had random dizziness but I didn’t think it was major but now every time I stand up I feel very dizzy until I sit back down. I also get dizzy if I sit upright for more than 10-15 minutes, so I need to lounge with my feet up as much as possible. This issue makes it really hard to leave the house because being in a car means I can’t really get my feet up and being in a wheel chair is the same. Flu like symptoms were also something major for me 6 months ago but I only seem to have this on occasional days now. My sleep has generally improved but I do still get the odd night of scary night terrors, night sweats etc. My sensitivity to noise, light and movement is much much worse now. I am even finding that watching TV can be a problem. Sometime if the image on the TV moves suddenly I get instant motion sickness, it’s really bizarre! My body temperature seems to be regulating itself a little better now. It is still low but it’s consistent, previously it went from being very low to very high each day … it was just all over the place. My mood is still generally good, I have down days just like everyone else but it doesn’t happen all that often.

The things that have become worse I am assuming are just following the path of the disease and the things that are better I believe are mostly due to the medications I am using. I saw my Dr today and he has given me a prescription to get some Atenolol which is a beta blocker and when used in low dose it is supposed to help with the Orthostatic Intolerance. So fingers crossed. If I can get that under control I will be much more functional I think.

So I guess all in all I am doing OK. The big picture says I have not become worse over the last 6 months, but not significantly better either, just different. Different is OK! I think I am happy to just see changes occurring.

I’d be interested to know if other peoples symptoms wax and wane like mine have??


  1. I have clusters of symptoms that wax and wane. It's not that clear cut but, for instance, if I start getting roving muscle cramps, I'm usually also having an increase in all sorts of overactive-immune things like a sore throat, skin inflammations, tender spots, malaise. Days, weeks... eventually it settles and I move on to a different phase. Or even sometimes I get to repeat the previous one. Ain't it grand!

  2. Hi Lee! From my experience, this is very typical. Both Ian and I have symptoms coming and going both in the short term (ie. within the day and day to day) and also over longer periods like 6 months or so. We have noticed seasonal patterns too. For us, winter is a bit better than summer usually. Also, some symptoms I had early on, like sore throat and aching ankles(!) I basically never get now. I try to think in cycles of symptoms, so that if an old symptom comes back, I don't feel like I've gone backwards.
    I've had that experience of not being able to watch TV but it doesn't happen too often thankfully. One thing I rarely do tho' is go to the movies because it is wayyyyy tooo sensorily stimulating. It's a shame, because for a well person its considered a nice relaxing thing to do, and friends often suggest it, thinking it would be good for me. I get car-sick pretty easily if someone else drives me, but the worst was a period when I even got carsick driving myself!!
    Good luck with the beta blockers. I take them too, although originally for migraines, but they are definitely considered useful in CFS.
    Will email soon!

  3. I think the waxing and waning of symptoms - at least for me - is the hardest part of this illness. You just never know what is coming around the bend, you know. But I guess that could be a positive thing as well because a good moment or day could be coming around the corner as well.

    I'm glad you are doing any worse. Staying sorta consistent I think is a good thing.

  4. Yep! I once heard someone describe CFS as a 'moving target'. I'm better in the Summer than the Winter and I know when my base line is improving because I get old symptoms I haven't seen in a while - as if I'm going backwards through a process, so muscle pain and cognitive problems are actually a sign of improvement for me! If I'm too fatigued to do much I don't get them.

    It sounds like you are making awesome progress. The OI must be a nightmare though. I hope the beta blocker helps with this and you get a bit more vertical time. Hugs across the world . . .

  5. Yep same as everyone else: stuff comes and goes and sometimes I can put a reason to it (I think) and sometimes not ...all very random. Ten years ago at diagnosis I had awful OI. Had to give up driving for a while...well months because getting in and out of car was terrible and dangerous for me to drive. Couldn't sit up for long either. Had to lie down on floor at GPs once. Everyone thought I was nuts.

    Sensory stuff was also awful ...telly,music, telephone, driving/being driven and things moving past me. I remember once driving through the dappled shade from some overhead trees and the 'coming and going of light /shade made me so giddy and nauseous I ha dto pull over and wait 30 mins until I could drive off again.

    By & large all these things have reduced with time. They returned last year with relapse but gone off a bit again now.

    I tried Beta blockers but didn't like them and really I've relied on time, ostepathy, reiki and herbs and yoga and relaxation. Also took Sertraline for a while but not sure it did much (apart from for IBS).

    I think time can help a lot (depends on individual) and also though I'm NOT saying anxiety makes these things happen, I think anxiety and expectation can make them worse. I feel that with M.E. the body and mind are so fragile and 'wobbly' that one needs to treat things very gently so personally I'm not a huge fan of strong drugs.

    Hang on. You're doing really well and keep asking questions.

    Take care (*)

  6. Remember I'm somewhat of a "newbie" -but my symptoms definately cycle on some level. I constantly have the fatigue and achy (sometimes screaming) body pain, but when I've really overdone it or am headed for a bad crash - the sore throat ramps up and the conjested cough comes back.

    I'm glad that your meds are helping some of your symptoms and hope the beta blocker helps. (The dizziness for me came on after my initial onset and still comes and goes.)

    The best news to me (for you) is that your mood has been overall good - and I'm so happy to hear that.

  7. I think the waxing and waning is a good sign. It means you're body CAN bounce back. One of my difficulties coping with this illness is the relentlessness of the symptoms. I pretty much always feel the same way everyday. Overall, you seem to be doing better. Here's hoping it continues!

  8. I see the changes as positive, it means some improvement/better time is possible if they can ebb and flow like this. Also it means we don't get ALL the symptoms at the same time - nightmare scenario! My main symptoms have changed over time, I can't say life quality is dramatically improved because something else seems to just take over the top spot, but i hpoe for a bit of a break one day!

    Good luck with the OI, as you know, I know how debilitating that is. It can also account for the sensory problems which can stem from lack of blood flow to the brain sometimes i think - mine are certainly better as POTS is managed. Good luck with the meds.

  9. Excellent, thanks everyone .... it's good to know that within our community I am considered perfectly NORMAL hehehe.

  10. Normal schnormal ....we're all lovely in our own way :O)

  11. Waxing and waning symptoms are often defining characteristics of CFS, so you're in good company. Studies show that people with waxing and waning symptoms do better over time than those whose symptoms are constant.

    Hope the beta-blocker helps your OI - there are lots of things that can help, especially HUGE amounts of salt and fluids. I have a wonderful article on treating OI written by the doctor who first identified it as part of CFS. I see that it's no longer available online, but e-mail me if you want a copy (from my profile).


  12. I can definitely relate to some things are better and some things are worse. I found beta blockers helpful (I take Pindolol) and also (thanks to Sue) use V-8 which has lots of salt in it whenever I feel extra dizzy.

    I too get dizzy with sudden movement on TV. I also can't use the laptop as much anymore.

    You're in good company. : )

    I think you're symptoms are going to continue to improve and change. THe OI is tough though...

  13. I've heard that managing the Ortho....can really help. Let us know if it makes a difference.

  14. Hi Lee, just joined your blog got my CFS in 2008 after 2 years or severe stress mentaly and final blow came after doing physical activity running. I can exactly say same things what you are relating to, my diziness and OI which i get often i combat to certain degree with SR 5 mg cortisol (helps ur adrenals which in cfs 85% have burned out) you can to up to 10mg without suppressing them but i just do small natural SR cortisol 5 mg. Also find helpful for OI 1st thing AM I drink half teaspoon of seasalt with full glass of water, and up to 3 gr of vit C before 2 pm.

    I read your 1st post and it all makes sense.
    You had lots of stress at first and later too, and same like me (i took care of my dad who eventually went to god in my arms) and work stress etc..too many stressors weakend immune system possibly some genes might play in this and than we picked up additional bugs and system was already too weak including adrenal glands that also fight off bugs, almost 80% ppl i talk to their cfs started (when they dig deep with some sort of stress either mental or physical) Im going to Panama in september 10 for adult stem cell treatment (see if this will turn things around) it did for some ppl under 30 and also for some over 40, im in the crowd of 43, also when i start thinking back right before cfs in 2007 i had mild artrithis in wrists, neck, hips etc, same like you needed some major teeth repairs, and things like that, talk to you soon.mark

  15. Jumping on the bandwagon of "Yep, me too". Having you write out the specific contents of six months of physiological ME/CFS symptoms helped me feel "normal". This would be a great post for people without the disease to read and get a good understanding of life with ME.

    I can't sit up straight either due to OI--like yours, mine is severe. I call the way I need to sit the "CFS recline". I take a pillow with me when I go out, both to prop up weak muscles, but when sitting in a "have to sit up straight chair", I can put the pillow in my lap and lean forward, which also helps OI. I'm heavy into salt. You too? Salt it once, salt it twice...

    I'm an over twenty year vet (darn not in age,in years with the illness)and have progressed much through the years, particularly in neurological symptoms, including autonomic (OI). My symptoms wax and wane every takes such little exertion to cause neurological challenges to worsen.

    Hoping the beta blocker is helping you. I tried one many years ago, which after a couple weeks of help, ended up tiring me overall. But, I have the feeling the one your taking was not the one I tried. Curious to know how you're doing on it. Hoping its working well and you're enjoying more "vertical" time. Kerry