what to do

[alicewoolf]

Every summer I relapse badly. not sure why but I go from being moderately affected to fairly severely affected for a month or two- maybe it has something to do with the hot weather poor sleep etc. I was just wondering what other people do when this happens.
My instinct is to push myself, (with help of a coffee) especially as I live alone and need to get food shopping etc. but I know I should be resting although I don't necessarily feel much better if I stay in bed all day. I am trying to stay calm as I know it'll pass, but I am pretty shocked by how bad I feel. Any advice or tips anyone? It's almost like when things are this bad, even minor activity required day-to-day makes things worse so I can't get a 'handle' on the illness and get the leg up I need...

[CS1]

There is no quick fixes as i have found out.

If you have found the Gupta programme difficult.

What you could try is to alternate the Gupta technqiues alongside seeing a one - to - one coach and introducing self expression / interests.

Thanks
CS

[*Emerald*]

im on a dip too Alice.

Oddly enough, once id quit coffee i realised some of my symptoms
were made worse by drinking it (racing heart, heartburn, disturbed
sleep, palpitations)

Im drinking tea now and suffer much less with those symptoms
Tho `A` coffee is no problem, if it is only one or two keep drinking
it if you feel it helps

It was my 10 plus coffees that made me a wreck

[lili2701]

yeah also coffee can be really hard on the liver, and if your liver is not well, you have a myriad of symptoms like fatigue, nauseas etc

[clarkcat]

To alicewoolf:

I've had cfs for 18 months. I am into my second summer. It has become more challenging for me in the heat (I live in Texas where it does not even cool down at night). You are not alone. This year I am simply trying to keep going: get up at the usual time, get chores done, be pleasant to others, get a lot of rest and sleep. I wish I had a different narrative for you, but it sounds like we are experiencing the same heat-related downturn that I am.

[alicewoolf]

thanks clarkcat, yes I'm convinced the heat isn't helping me either. I'm in a bit of a mess. I reduce my antidepressants because by what seems like some sort of sick joke as soon as I get to the dose that works for depression and sleep I have to start eating constantly. Eg I have a meal and 30 mins later I'm starving. Dont get me wrong I dont actually want to eat. Sick of the sight of food actually, but they call it 'gastric emptying' and its one of the main side -effects of this medication that I'm on. So I reduce the meds and boom I can't sleep. Feel totally desperate. but no choice but to carry on

[niaholt]

Alice,
Have you tried the old Tri cyclic ant-depressants...called Endep here in OZ. They are a different class to the SSRIs....they may not give you that awful sensation. I know that and its horrible. Have you tried Melatonin for sleep.?

[Chronicfatiguetreatments]

Tri cyclic ant-depressants

those are one of the few things that helped my sleep. Since then I've switched to klonopin + benadryl, but i took a tricyclic called sinequan for a while. If you take them at low doses they work like very strong anti-histamines. So thats what puts you to sleep.

[alicewoolf]

I am already on Tricyclics and that's the problem!!! they cause (major) increase in appetite and weight gain. they're much worse than the SSRIs for that. my psychiatrist says that putting them up and down all the time is making things a lot worse and she's right but i don't know what else to do.

[niaholt]

Alice,
Have you tried Lyrica, a new kind of drug for nerve pain. Or Cymbalta...an anti depressant that is good for pain....you probably have. I am sorry you are in that dark place at the moment.

[java]

I found coffee a problem for me, so i switched to Rooibos Tea. More antioxidents than green tea, but no caffeine. And it relaxes the central nervous system. It makes a difference for me. Maybe something to try and see what happens?

[annie]

Alice, I do sympathise with all the horrible things you are going through at the moment. I have been on Dosulepin, a trycyclic, for ages, it really isn't helping at all, neither pain nor mood, so I am gradually reducing the dose I was on 75ml.,so far no horrible side effects, am now down to about 20ml. When I am totally off it my G.P suggests that I try mirtazapine, it is not trycyclic nor SSRI, I had a dreadful time trying to get onto several SSRIs, thought I was going mad at times. A friend of mine who has been on mirtazapine for several months has found it a great help, she actually feels serene for quite a lot of the time. It does make her a bit hungry but not dramatically so and that is reducing as her body gets used to the tablets.
I tried Lyrica a few years ago, for the pain, it did not help me, but I know it has helped some. Pain comes and goes with me, is worse when I get very hot or overdo the movements.
It is better not to mess around with your trycyclic dosage, though terribly tempting. Our poor bodies and brains have enough to cope with, with this weird illness without confusing them further.

[jean]

Referring to Annie's last post mentioning SSRI's, I had a dreadful time with them too and ended up in hospital with all the side effects - possibly because I was prescribed the full dose straight away. If anyone is contemplating trying them please try and persuade your G.P. to start you off on the smallest dose possible

[alicewoolf]

It is better not to mess around with your trycyclic dosage, though terribly tempting. Our poor bodies and brains have enough to cope with, with this weird illness without confusing them further.

Annie. you're SO right. I spoke to my psychiatrist and like you she said that reducing my medication when things are so bad is a terrible idea. So I've put it back up (just half an extra tablet seems to tip me over into the benefits I feel when I'm at the right dosage. I have slept through the night 2 nights in a row (which is unheard of when I'm at a slightly lower dose) and the pain is considerably better (as are the sores in my mouth) as a result. I've learnt my lesson, no more messing about with the dose for the time being. I need things to stabilize before I can even consider reducing the meds.
Annie how are you, and how was your scan? let me know how you're getting on, and thank you for your kind message!
alicex

[niaholt]

Hi Alice,
It is good to hear you feel better. Once I was in a terrrible way coming into CFS and thought I was depressed. The Dr moved my tri cyclics up to 8x25 mg but I was still a mess. So I was then put on Proac as well and weaning off the others at the same time. I remember thinking I was going mad and ran out into the street wanting to throw myself under a car. When I saw the DR he said he should not have done that....2 drugs at the sme time in huge doses.....then he talked of shock treatement. I soon decided I was going to overcome this. It was not depression after all. I no longer need drugs and manage to sleep.....just happened one day out of the blue.

There is nothing like sleep to make things seem not so bad. I have had to completely change my diet and live on thick soups......digestion problems. I have lost about 5 kg.as a result and I dont mind the diet.....have invented some interesting soups, all vegetarian. It is when you are starving that you reach for anything to stuff in your mouth and that means kilos. So if you get hungry again try having some soups to fill up on.