Newbie

[Wackersjackers]

Hi there

Im new to this forum, but have been following for a while now.

Brief history - got sick 11 months ago, not sure what the root cause was, I think a build up of things..anxiety / lack of sleep / back injury in childbirth...
Symptoms include - fatigue and pain, twitches, muscle jerks, insomnia, IBS, exercise intolerance, GERD, racing heartbeat, low blood pressure, nausea...you name it I have had it!

Got diagnosed with Fibromyalgia in March and have been following a forum for that for sometime now...was bedbound in beginning, then housebound, then after 4 months got myself back to working 4 days a week (also have 2 kids) - then worked 2 months and got signed off again, for 6 weeks over summer, during this time I was the best I have been for a while...not needing to lie down everyday, was on amitriptyline 50mg and started melatonin supplements - stayed like this for 3 months, got myself back to work again and now boom - im back to feeling bedbound

I have a feeling I have something else going on like CFS or ME...I have had neuro exam and MRI of brain - no lesions but did show up a small benign pineal cyst? All bloods were fine every time and i seem to absorb vitamins quite well

Im on a host of vitamins (off my own research) B Complex, Magnesium, Eve Primrose Oils, Fish oils, Coenzyme 10, Vit D in beginning, zinc and vitamin c, D-Ribose

Im in UK and find the services here frustrating to say the least...

My sleep is my worst symptom - which results in crushing fatgue - i often have that wired but tired feeling, like my body is on high alert but inside im soooo tired. Often go 3 or 4 days with about 3 - 4 hours (with melatonin) and then have a big catch up like 7-8 hours as a result...I have tried MANY sleeping pills over last 11 months, including valium. I think i have forgotten how to sleep without aid

I think about to lose my job - work 4 days a week but struggling big time with this

Sorry for the long post. I guess my next question is - does it sound like i am doing the right things to help my recovery? I am seeing a nuritionalist at the Optimum health clinic also and she found low protein, so have added whey protein shakes to my morning regime...

Im a 35 year old mum and have two kids, living in UK and just wanted to make friends and have advice - will this thing get better?Im determined to find a way of coping somehow

 

[SickOfSickness]

Welcome.

Do you have a good doctor? You need them to keep medical records so you can get disability benefits later if you need.

Can you get more consistent sleep? It sounds bad. I would feel much worse if I got 3-4 hours for 3 days in a row. The catch up of 7-8 hours is not a lot. I sleep 8-9 hours most nights, sometimes more, and sometimes nap. Do you nap?

My friend did worse on whey protein. I am worse on soy protein. Many of us have problems with casein (that's in most dairy), gluten, and non-gluten grains.

 

[Wackersjackers]

Hi thanks sickofsickness

Sleep is my biggest problem...have tried what seems like everything medication wise. Something just keeps jerking me awake. I am sure I have a sleep disorder of some kind and need a sleep study, but finding and affording one in the UK is tricky.
When I do get to sleep, there are several interruptions...I have suffered from RLS on and off and do seem to get a lot of twitching and jerks
Nap - i try to, but no matter what I do and how tired I am, I cant sleep in daytime...not sure what this is, but have always been like this (so is my mum) mum is not ill though

The clinic I am with wanted to try and build me up, as im very thin and my protein count was low, even though I eat a lot of meat / nuts / seeds etc

I do have a good doctor who diagnosed me with Fibro and said she suspects CFS as CFS can often run along with fibro...

My main question is - if I have CFS = when does it become M.E or are they the same thing? I have heard so many differentiating reports and I bet I have opened a can of worms with that one!

 

[Plum]

Hi

I have sleep issues too. Biggest difference I've made is with blood sugar balance. You have to find what works for you but high protein, lots of veg and a bit of carb works well for me. Cortisol levels are often off for us so looking into that and maybe asking your nutritionist about saliva adrenal testing.

I personally don't do well on whey protein to increase protein.

Also look into organic food. GMO's are now fed to animals we eat in the UK.

With blood sugar imbalance and ME symptoms in general I would consider learning about leaky gut and checking any food allergies with a nutritionist.

For me, I used to take a lot of supplements and with gut issues I didn't realise I wasn't utilising them properly. I've found it better to concentrate on eating as well as I can and supplement very lightly.

I hope you manage to find the advice yr after - lots of helpful people on here

 

[SickOfSickness]

That is a tough one. You can look up M.E. definitions and see if you fit. The definitions are not the same. One of the key parts is PEM. To keep it brief I will say that is feeling worse after exertion and with slow recovery.

It sounds like you have it from your description, but it's hard to know. If you managed to get your sleep much better, and other changes like diet and lowered stress, what if you improved a lot. Then looking back you probably did not have M.E. but CFS. In my opinion at least. You will find some different opinions.

CFS versus M.E. depends on the doctor too. Many doctors are clueless so they use CFS if they can't find another reason for your fatigue and problems. Then it means nothing.

Yes it's common to have it together with Fibro.

 

[Wackersjackers]

yeah - fibro has that too. I was finding at one point that walking would help me everyday, but if I do something big like go on a day trip, this can knock me out for days...but I know people with fibro who have that also!

Fibro is not mean't to be progressive, but is CFS? Is CFS a warning for M.E? I find it all such a minefield. With fibro your meant to exercise, but with CFS you are not? I shouldn't waste all this energy thinking about it, but really bugs me

I have changed my diet for the better (low sugar / gluten free where poss) cut out alcohol, no smoking, given up caffeine. No change as of yet (been doing this for over 6 months)...

Also had the adrenal testing, waiting for results on that, next will be mitochondrial testing.

My friend who has M.E, says CFS and ME are different conditions. But then others say its the same thing...Don't know why I think of this so much, CFS or ME really scares me, as I feel fibro can be controlled

 

[Plum]

And in the UK CFS and ME are used interchangeably! Love it!!

 

[SickOfSickness]

Well you could have M.E. only, Fibro only, or both together. I have both and know people who do, but many on this forum have M.E. without. I have met people with Fibro only.

They are not the same, but they have similarities. A lot of people have both and they can start with one and get both.

I also feel Fibro is complex and scary to sufferers, but not in the same realm as M.E.

Minefield is a good word for it.

If someone already has CFS symptoms they are probably at more risk for M.E. later.

I think Fibro does progress however unless you're being careful. Maybe more slowly.

I don't think it's good to exercise with Fibro except very gently.

 

[Snowdrop]

Hi wackers

Welcome to the PR forum. I'm sure you'll find useful info here.

You said you were taking magnesium, perhaps a higher dose might be useful. And I would try vitamin D. Vitamin D is a little different in my experience from other things in that instead of 'titrating up' to a dose you start by taking a large dose and then backing off to a maintenance dose.

I have had sleep problems a long time. There was a point when I often had the constant jerking awake, this has lessened over time but without resolution of sleep issues. I sometimes use a OTC muscle relaxant in place of sleeping meds.

Are your sleeping meds effective? I have learned to accept that I won't get a good night sleep every night but if I use either the muscle relaxant or lorazepam or pain meds (tramadol) and magnesium when I can get it that at least I won't cause the dependence on the lorazepam (because I don't take it more than 2-3x/week).

When I do take it it works pretty good at keeping me asleep but I still don't fall asleep quickly. Although I can't work so I can sleep in as long as I can when taking it.

Sleep really is important so focussing on this and trying to resolve it is a good idea.

best regards,
SD

 

[SOC]

@Wackersjackers

Bad (really bad) sleep can cause a lot of the symptoms you list. If I were in your shoes, I'd work hard to get the sleep problems under control and then see what symptoms still remain. Maybe you wouldn't have ME/CFS. Wouldn't that be a relief?

For me, sleep maintenance was the worst sleep problem. I used to wake up very hour or so. Trazodone worked wonders for me, although it doesn't work for everyone, by any means. I felt loads better after getting 7-8 hours of sleep every night.

 

[Little Bluestem]

I use a rice protein powder (organic, non-GMO).

There is a lot of information on sleep here. It is a major issue for many of us. You will find that many of us use several sleep aids each night. We rotate some of them.

{Little Bluestem goes off to get her blue-blocking glasses.}

 

[barbc56]

Welcome!!

I agree about the sleep issues. Definitely a sleep study.

However, if you do have me/cfs, it won't be a miracle cure as you would still have the me/cfs. It's all relative and if you can address sleep issues as much as possible, it helps.