RLS LIFE: Drugs, Side Effects & Everything Else

[jumpyowl]

Nadia: I think now it is becoming clear. There is no FDA approved drugs for RLS/PLMD. There is no specialist trained in the treatment (management) of this obscure and complicated disease. What matters is the type of human being the attending health care professional is, how devoted is he/she to the welfare of the patient, how hard does he/she tries, how much is he/she willing to work together with the patient, how well can he/she listen? How intelligent is he/she? Conscientious? etc.

It should be clear that your neuro is failing you at several levels. He is far from being conscientious. He does not realize the limit of his knowledge. He is not willing to learn. He is not willing to listen. He is not even trying very hard. You are surely better off without him. Luckily you have your GP. The problem is the power. Does your GP have enough guts to cross swords with him? Would he be willing to rock the boat if necessary?

If you document the screw ups of your neuro it will give you some power over him and this you may need before he is out of the picture. One of the draw-backs of socialized medicine I guess. But I am not going to go there!

Let us hope the changes your GP made are good ones. Your mother is likely to be right about your sensitivity to certain foods but it should be clear to her that there are doctors one cannot trust!

Let us know how the new regimen works. You may have to switch to a recreational drug before it is all over.

[sardsy75]

It's been 72hours since my last dose of levodopa....and I feel like a new woman Well.....almost.... (My hubby certainly enjoyed my newfound energy lastnight )

With the amount of diazepam now in my system....i really don't think i should be allowed to drive

As for the gabapentin....i'm starting to enjoy the hallucinagenic effects it's having on me although the fuzzy-brain in the mornings is getting a little too much to bear! I've spread the dosages to 300mg at midday and 300mg at bedtime.

The most bizarre thing i've noticed is that considering i'm on 5mg Diazepam every four hours it's done nothing in the way of making me the slightest bit drowsy!!

BUT....my legs are behaving (touch wood ) I am quite aware of the fact that it took exactly 9 days for my brain to realise what i'd done to it last time, and if that happens again, then it will be perfect timing with my second opinion appointment only a week away now!

Jumpy, as a "bean-counter" by trade and a Virgo by the stars, my specialties are document, document, document, and a borderline OC of pedanticness about record keeping.

Everything my current neuro (Dr S) has done (or not done ) has been carefully noted. A few days ago I decided that my Excel based Diary was becoming a little too cumbersome to manage, so my darling hubby has very kindly utilized his programming skills and written a basic Access program which is much easier to use!

We live in a regional city....600kms from the state capital, Brisbane, where the absolute majority of the medical specialists (in all fields) choose to reside. To them, we are country folk (there's 60,000 odd people in my city alone, but then you can add another 40,000 to that taking into account the smaller communities and farms within 200-300kms) and are unable to offer the "bright lights and fast paced living" that a big city can offer.

Dr S, until recently, was the only Neuro who visited our city on a regular basis (once a month); so he is basically the first one on the list for all the GP's in town who need to refer someone. There are a lot of people here who think he's the greatest! This fact alone could be a major stumbling block in the "rocking the boat" idea, however, I have not ever seen my GP (Dr K) so cranky with a fellow colleague as he has been with Dr S; so there could be hope yet. The "new kid on the block" who also now comes to our town once a month is actually the Neuro i'm off to see next week!

Dr K is very highly regarded in our community and is president of the local medico society and a high profile member of various other medical groups in town, so I don't think he would hesitate to cross swords with another medico if he thought it was necessary

I've found that Dr K has a lot of time for our family. Mum and I both have chronic, debilatating ailments, however, unlike a lot of his other patients, we do not expect him to find a cure, just help us to be as comfortable as possible. He finds us challenging, and we Always get our alloted 15mins with him, if not more (particularly if he's in a chatty mood), and goes out of his way to try and make us as comfortable as possible. I have a LOT of time for Dr K - he was the one who made sure I made it to my wedding, and not my own funeral (long story!).

Now all I need is a Neuro with those same qualities who can work with me and Dr K in a positive way!

Hmmmm....11.00pm.....time for beddybize.

Niters to all....sweet dreams to all

Nadia

P.S. I've already had someone offer to make me a "hoochie" cake ; and another person is just itching to give a local "supplier" some business

[Rubyslipper]

Girlfriend, what are we going to do with you? I just wish I was there to give you a hug and a shoulder. This stuff is a nightmare isn't it? If you have to go to the doctor's everyday, do so until he gets you some help. And if you get the results of your B12, iron, etc. tests back as normal, don't take it as true until you run them by my friend Rose. E-mail me privately and I'll put you in touch with her. At that point you can take her advice or not. I had the B12, ferratin and iron tests done and the results were "normal". My B12 was 307 which is in the low normal range. But after doing research on my own and talking to Rose, I am taking 2500mcg of B12 a day. I am now on 300mg of Neurontin in morning and at night. Other than the "buzz", can't see that it is helping. Am having the worst RLS ever. I am walking the floor most of the night and even then, the legs are so antsy I can barely walk. Also having symptoms during the day. Didn't mean to turn this into a talk about me. Just wanted to thank you and Mr. Jumpyowl for your support. I will try the selective hearing on the boss (my husband has used it for years!) I also think I will try the music/soothing sounds at night. I have always loved the sound of the ocean but I'm afraid to try that. If it keeps the legs calm, I'll just have to get up and go the the bathroom all night! Nadia, please take care of yourself. You have gone through so much lately. Just remember, we're pulling for you.

[sardsy75]

Friday May 14th 2004

Saw my GP again today. The blood test results he had ordered on Tuesday had not yet come through, so I have to ring on Monday. I had noted his rather quizzical expression when I asked if I could have my Ferritin level tested (which he put on the list), so when I went in I took in some info about it. He was quite intrigued and had had no idea about its relation to RLS.

Drug-wise, I'm on 20mg Diazepam per day (5mg/4hrs) and 600mg Neurontin (300mg/twice a day). My dear GP had a good chuckle over the fact that the amount of Diazepam I'm on would have even HIM "off with the fairies", but I was wide awake and the happiest i've been in a while.

My legs have been very good, only very mild symptoms. Still having problems with the ol' Gabapentin though. The hallucinations and "fuzzy" brain in the mornings are getting beyond a joke, and now I can relate to the problem that Denise had......constipation (some cure this turned out to be!!!).

Since my Second opinion appointment is next Friday we've decided that I should be in some sort of "form" for the dear doc so he doesn't think we're telling stories! So, I'm going to slowly wean off the Diazepam and....the Gabapentin (yay!). By the time Friday rolls around, I should be in fine form, cursing like all hell, and hoping that this next guy knows SOMETHING about RLS and how to treat it.

I also invested in a couple of classical music cd's (and the best of Guns n Roses and Poison just for good measure!!!). Tried out the classical ones last night and they were a great help with the relaxation! Mozart is my alltime favourite composer, so he got a good workout last night!

Saturday 15 May 2004

It's actually 1.45am Sunday morning as I write this, but, I am absolutely petrified of going to bed.

Why?

I've had three 5mg doses of Diazepam today, and two 300mg doses of Neurontin. Legs have been good again, only very mild symptoms. We went to the movies at 3pm to see Troy (great movie BTW!) but about halfway through I felt the "your drugs have taken over now, you have no control over you or your brain". NOT a pleasant feeling! I was so "out of it" by the time the movie had finished I had to hang on to my hubby for dear life as we walked out of the theatre.

We went to bed at about 10pm (i'd had my "nitecap" of drugs). I was still feeling "out of it" and as soon as I shut my eyes it was a whole new ballgame! The only thing to compare it to is the feeling you get after a really really good nite on the vodka and the room is spinning, yet you're going nowhere. I tried to keep my eyes shut and relax three times, and three times my head spun out so bad I didn't think I would keep up!!!! I don't like this feeling at all!!!! If chucking my guts up would help (as it would when one is totally inebriated!), I would!!!

I've had Diazepam before, and in similar dosages with no effects. I was not on it when I started the Gabapentin, and when I started on that (the Gabapentin that is), all the funny stuff started. The Diazepam may be enhancing the effects of the Gabapentin, but I'm not sure. Will have to keep tabs on how I go as I wean myself off everything for Friday.

Being one's own guinea pig sucks big time. The fact that sometimes the relief is worse than the ailment sucks even more!!

Well, I suppose I'd better make an "appearance" in bed before my hubby awakes and realises that i'm not helping to keep his toes warm! Winter has well and truly arrived here - and I hate the cold!!

BTW Ruby, you're always welcome to turn the topic of conversation back on to you....you know we care about how you are doing! As for the loan of your shoulder and a hug....think we'll have to stick to cyber-hugs!

Nite nite

[sardsy75]

Sunday 16 May

Yes, I did eventually go to bed....although it was a looooong time before I could actually close my eyes without the room spinning around me

As I mentioned, I'm weaning myself off everything so I'm in some sort of fine form for the new doc on Friday (we fly to Brisbane tomorrow morning).

Drugs schedule was as follows:
Diazepam - 1 x 5mg - Morning, Afternoon & Night
Gabapentin - 1 x 300mg - Afternoon & Night

Again, I had trouble with rather druggy & hallucenogenic effects, and am NOT enjoying it.

Monday 17 May

Drugs schedule was as follows:
Diazepam - 1 x 5mg - Morning & Night
Gabapentin - 1 x 300mg - Afternoon

It is DEFINITELY the Gabapentin causing those druggy effects. I took my dose at around 4pm and by 7pm was flat out sitting up straight in the chair, let alone trying to hold a coherent conversation with my hubby! The sooner I'm off this damn stuff the better! Wonder Drug???

Tuesday 18 May

The overall drug effects are definitely starting to wear off in my system. I had a very uncomfortable night last night....waking up every hour or so kicking and squirming.

My drug schedule for today will be:
Diazepam - 1 x 5mg - Night
Gabapentin - 1 x 300mg - Afternoon

As I mentioned above, we fly to Brisbane tomorrow (first flight out at 6.05am!) and fly home on Saturday afternoon. My appointment is on Friday afternoon. Sooooo, you will have to wait until Sunday for a rundown on how things went!

Until then, take care all.

[jumpyowl]

Tough gal, Nadia:

Make sure that in the beginning you get him talk on his philosophy (theory) of treating RLS. The present main line defenses:

a/ various ways of dopamine agonist supplementation

b/ opioids

c. benzodiazapines

d/ anticonvulsants

pro and cons for each, what worked for you in the past and what did not work. The above is for example, he may put it differently but has he an overview of his battle plan? (E.g the chart I was talking about in one of my posts)

He should be taken a measure of as much as you are and hopefully he understands that it has to be a TEAM work. (tell him) This is a disease of thousand faces (lupus used to be called that) I would say "handles" for RLS. And nobody knows all the answers.

All these of course should not be done in a confrontational matter, rather than in a co-operative spirit. He has to understand that you have suffered needlessly in the past because this communication link did not exist for you and your ex-doctor in the past. He should be impressed that you traveled far to see him because you were hoping to find a knowledgeable but also a co-operative physician who is willing to hear you out and also who is willing to establish the all important link that allows for instant (within a day or two) communication including feedback.

I shut up now. Just a minor thing for people who read things at a glance. If you could change your notation, since dose is some time poorly defined, it would help me, and make yours more precise:

In your notation


XX medication 1x5 mg morning and evening is different from

XX medication 1x5 mg evening

but to me it looks the same daily dose. Of course, it is not.

I would write:

2x5mg (morning and evening),

if you take two 5 mg pills at once then it is 10 mg.

Your notation is understandable but one has to stop and figure it and has to make assumptions.

Wishing you good luck and waiting for the "results."

[sardsy75]

Just a quick post to say that I'm back....and utterly worn out .

We flew to Brisbane very early last Wednesday morning and flew home on Saturday afternoon (hence the lack of posts from yours truly for the past few days)

The appointment with the new Neurologist went EXTREMELY well .

Primary Diagnosis: Chronic Fatigue Syndrome
Secondary Diagnosis: Restless Leg Syndrome brought on by....you guessed it....another recurrence of Primary Diagnosis

I have much to tell about this appointment and as soon as I get my thoughts into some sort of order, and get a little more time on my hands, I will post a much more detailed debrief.

I will be working almost full days for the rest of this week ($$$$...yay!) so it may be the weekend before I get back to this.

Until then.....pleasant mulling, Jumpy

For the rest of you....pleasant dreams

[jumpyowl]

Primary Diagnosis: Chronic Fatigue Syndrome
Secondary Diagnosis: Restless Leg Syndrome brought on by....you guessed it....another recurrence of Primary Diagnosis

I have much to tell about this appointment and as soon as I get my thoughts into some sort of order, and get a little more time on my hands, I will post a much more detailed debrief.

Well, I can hardly wait! It sounds like you had quite an adventure.


Well, as it turns out I have some experience with CFS, where some times they add two more letters indicating immune disorder. The first I heard about it was when my daughter came down with a mysterious malady at the age of 20.

The fourth doctor, an endocrinologist, told us: well I can diagnose only CFS as she only had it for less than six months. After that time interval I think we shall be able to make a more definite diagnosis of fibromyalgia.

Well, this did not make much sense to me as she always had pain, which is atypical of CFS.

Anyway, I am going to wait for your detailed report before I shoot my mouth off and go back to mulling. But make sure you let us know how (on what basis) he made the diagnosis? Any change in medication?

Sweet dreams!

[sardsy75]

So much for the weekend update

I worked an average 6 hours each day Tuesday to Friday, and have spent the entire weekend just getting over those four days

Jumpy, I imagine that you have been literally "chomping at the bit" waiting to hear about my adventures , so to give you just a 'lil piece to "chew on" for a while I'll try and put it in a nutshell:

1. Maternal Grandfather - never, ever slept for any longer than an hour at a time; the rest of the night would be spent pacing around the house.
2. Mother - chronic fatigue syndrome; fibromyalgia; non-existant IGA levels (i.e. non-existant immune system) and relies on a six-weekly injection of immuno(gamma)-globulin just to stay on the right side of healthy
3. Me - a walking disaster since the day I was born (I am working on a "timeline" just for interest sake and will have it available for anyone interested) ....at the appointment, it was mentioned that each person inherits a part of their parents biochemistry and if it's not so good biochemistry that you've scored.....nuff said

It's been 10 days since I met my new Neuro. I'm a great believer in things happening for a reason, and the coincidences leading up to this appointment were like big red flags! However, I digress (as usual )

1. I am OFF all the prescribed medications my first Neuro had given me (i.e. no more parkinsons drugs AND No More Neuontin - YAY!!!!! damn that was one crazy drug with some crazy effects!!!!!)
2. I am OFF all the prescribed medications my GP had given me (GP did get a big TICK from the new Neuro for starting to head down the right track with the anti-depressant though)
3. Current Daily Drug Schedule:
- 1 x 10mg "Endep" a tricyclic antidepressant - active ingredient - amitriptyline hydrochloride (taken before bed) NOTE: this dosage is to be increased to 20mg after 10-14 days and then to 30mg after another 10-14 days
- 1 or 2 x 2000mg Valerian (taken before bed)

How was the diagnosis reached?

Well....when we went in (I had my ever-trusty hubby with me ) on the desk was a pile of x-rays, mri's, blood test histories, doctors notes and doctors referrals. I had to smile when he commented that my blood tests were "exceedingly boringly normal".

BTW, my legs were in fine "gotta strech" form, which was good, however, the dang b****** wouldn't let me stretch!! He wanted to see how things were "working".....ugh..... He put me through some very basic physical neurological tests, which I passed with flying colours

So then it was a case of "so, tell me about yourself". Considering the appointment went for over an hour, cramming my life of medical misery into that small amount of time was quite difficult. AND he wouldn't let me refer to any of my notes; I had to do it off the cuff....which was quite frustrating at times as I have had major problems with my memory going completely blank at the drop of a hat, at other times being halfway through a sentence and not being able to spit out the word that's stuck on the tip of my tongue.

Basically, my RLS kicked in because I have been deprived of REM sleep for soooooo long that they'd finally had enough and went on strike (i.e. RLS).

I had the classic signs of childhood ME (or CFS) with constant chronic tonsilitis, constant ear infections, an extreme intolerance to lactose, and constant battles with my entire lymph system (to the extent that FIVE abdominal lymph nodes were removed at the same time my appendix was removed).

He asked "and how do you sleep?" My reply "I fall asleep, then within an hour or so, I'm awake. I fall asleep again, then wake up again." (The waking was only caused by my legs on a few occassions)

Being utterly exhausted to the extent that I am unable to wash my own hair, or do the simplest household chores, was not RLS. Even I had figured that when my legs gave out and I landed on the loungeroom floor a few weeks ago, utterly stripped of all energy and unable to move for an hour.

Treatment wise, it's back to basics - SLEEP, and REM Sleep is the ultimate goal! Hence, the tricyclic anti-d. The aim is to "reset my internal sleep clock". So far, so good, but the real results are a loooong way off yet.

All in all I've been riding a sometimes terrifying rollercoaster ride of ME all my life to the point that it nearly killed me in 2001 (six weeks before our wedding ).

However, I am much happier now that I know what we're dealing with; even if it is harder to manage. I feel as though a huge weight has been lifted off my shoulders, and have an even more positive outlook on life (still stuck on the kids thing though).

This guy looked at me as a "whole picture" not just as a "one moment in time".

Yeesh....i could almost write a book on this

Again, so much for the nutshell

And, it's past my bedtime (yawn!).

It could be up to six months before we see any decent results, but, considering the crap i've had thrown at me so far, what's another six months in the grand scheme of things

Patience is a virtue

Jumpy, I know you will have a million more questions....so, fire away, and I'll answer as best I can.

For the rest....apologies for rambling on....again!

Niters

[jumpyowl]

I carefully read and re-read your note Nadia. Thanks for taking the trouble of writing it down. You wrote:

However, I am much happier now that I know what we're dealing with; even if it is harder to manage. I feel as though a huge weight has been lifted off my shoulders, and have an even more positive outlook on life (still stuck on the kids thing though).

This guy looked at me as a "whole picture" not just as a "one moment in time".

As you know I am a skeptic about doctors but I will be careful not to rain on your parade! These things sound quite positive about your new doctor. I hope that you two agreed on a feedback mechanism especially with regard to how the new regimen of medication is working (this was in my last note I fired off to you before you left town - the one which you probably did not get in time).

I am glad, nevertheless that you found someone you can believe in.

The antidepressant is called here ELAVIL. I am very interested learning about your reaction to that new drug to you, which is now a major part of your medication.

I also would like to know how Valeriana and Elavil are helping in getting restful sleep. This is an awful big jump you have taken kiddo!

As you know my daughter has had fibromyalgia for ten years. During that time she has probably taken almost all medications at one time or another, I remember ELAVIL distinctly.

Several years ago, I briefly studied CFIDS (chronic fatigue and immune deficiency syndrome). At that time it was believed that chronic fatigue and fibromyalgia are two distinct albeit possibly related entities. Nowadays, the fibromyalgia journal (newsletter) talks about these two terms as if they were interchangeable (!).

At that time CFS had as its major morbidity a severe lack of energy (you certainly seem to have that) and fbromyalgia had pain. But again you could also meet fibromyalgia patients whose pain was certainly bearable and managable without opioids.

I had to smile when he commented that my blood tests were "exceedingly boringly normal".

BTW, my legs were in fine "gotta strech" form, which was good, however, the dang b****** wouldn't let me stretch!! He wanted to see how things were "working".....ugh..... He put me through some very basic physical neurological tests, which I passed with flying colours.

At which point I would have asked (with tongue in cheek): "Then I must be in the wrong place this being a neurologist's office".

Well, I will stop speculating and perhaps (?) worrying about you.

I am very interested in finding out how you are reacting to ELAVIL!!! If your RLS is secondary then perhaps it will not react badly to this antidepressant. But time will tell. (I guess that this is his idea?).

I also would lke to find out how does Valeriana rate with you as a sleeping aid. (I remember being in Stockholm, Sweden getting the Silver International Lacrima Award, [actually at the very same place where they give out the Nobel prices ] when I ran out of Ativan (lorazepam) which I used for sleep assist, especially when the sun got up at 2:30 AM. I could talk the pharmacist into giving me some Valeriana but it did not seem to be an effective substitute for the tranquilizer ditto with my wife - probably due to withdrawal symptoms).

When is your time line going to be published???

Wishing you success with your new regimen!

[sardsy75]

Hi everyone

Many apologies for the long radio silence! I have snaffled a bit of work (income - yay!) and while trying not to overdo it, must admit that i have been neglecting you all. Also, my hubby is trying to get me back into some good sleeping habits i.e. going to bed at a humane hour (like 9pm) instead of 1-2am....but it's not going too well and this has cut my online hours dramatically

I carefully read and re-read your note Nadia. Thanks for taking the trouble of writing it down. You wrote:

However, I am much happier now that I know what we're dealing with; even if it is harder to manage. I feel as though a huge weight has been lifted off my shoulders, and have an even more positive outlook on life (still stuck on the kids thing though).

This guy looked at me as a "whole picture" not just as a "one moment in time".

As you know I am a skeptic about doctors but I will be careful not to rain on your parade! These things sound quite positive about your new doctor. I hope that you two agreed on a feedback mechanism especially with regard to how the new regimen of medication is working (this was in my last note I fired off to you before you left town - the one which you probably did not get in time).

Since my run-in with the substitute GP who nearly had me in a coffin six weeks before my wedding in 2001 and my more recent 10 months of hell with the first Neuro, I too am pretty wary of any medicos coming my way!

It was my regular GP who made sure I got to my wedding and upright & mobile enough to enjoy a honeymoon in New Zealand (he was overseas when that saga started). All I needed was an immuno-globulin "kick up the bum" (i.e. those immuno needles HURT!) and i would've been right, but the sub-GP kept refusing. I even took my mum with me to one of the appointments and the sub Still refused. When my reg-GP found out about all this he was as mad as hell, as it would've been the first thing on his list to get me mobile again (i've had the "kick up the bum" about half a dozen times now), knowing that my mum relies on it every six weeks.

The antidepressant is called here ELAVIL. I am very interested learning about your reaction to that new drug to you, which is now a major part of your medication.

I also would like to know how Valeriana and Elavil are helping in getting restful sleep. This is an awful big jump you have taken kiddo!

The day I hit the floor completely unable to move I was willing to try anything!!! It will be three weeks tomorrow (friday) since I saw my new Neuro and started my new drug, and in that time I have only had a major problem with my legs.....once! I still have VERY mild RLS symptoms most nights, but compared to the "get me a chainsaw" stuff, I am in Heaven!! The day I had problems was the day after I had spent nearly 6 hours standing in the kitchen making a huge pot of vegetable soup from scratch.....you learn the hard way sometimes!!

I increased the Endep (or Elavil) from 10mg to 20mg on the 11th day (10-14days was the instructions) and am due to increase by another 10mg, to a total of 30mg by the end of this weekend. I noticed that I was sleeping more solidly on during the first 3-4 days, but have gone backwards (sleepwise) after that.

This is the second tricyclic anti-d I have been on. The other was Sinequan we trialled it for a few weeks and it had no effect on my RLS symptoms at the time which makes me think that my RLS is Definitely the secondary condition.

Yes, it was the new Neuro's idea to try the Endep/Elavil. He spent quite some time telling us about the clinical trials that had been done, the research and the results. Here in Aus it is the first line of "defense" with ME/CFS and has results....on paper. So i'm thinking that's a pretty good place to start. I am under strict instructions to ring him the minute I have any problems, and if all goes well, ring once a month with an update and I have a follow-up appointment booked with him in September (he comes to my home town twice a month & is booked solid until then!!).

Jumpy, you also asked about Valerian. I know from spending many hours in front of the shop shelves that it comes in many varying strengths....100mg to 2000mg. I don't take it every night (i have the 2000mg capsules), but have found that for the best relaxing effects, the stronger the better. It's not a sedative by any stretch of the imagination, but I do notice it kick in more often than not and can feel my body relaxing enough to let the other drugs do their stuff. Hope that made sense?

Several years ago, I briefly studied CFIDS (chronic fatigue and immune deficiency syndrome). At that time it was believed that chronic fatigue and fibromyalgia are two distinct albeit possibly related entities. Nowadays, the fibromyalgia journal (newsletter) talks about these two terms as if they were interchangeable (!).

At that time CFS had as its major morbidity a severe lack of energy (you certainly seem to have that) and fbromyalgia had pain. But again you could also meet fibromyalgia patients whose pain was certainly bearable and managable without opioids.

I have done some reading on ME/CFS and the more i have read the more my whole medical history (or should i say, my whole life!) makes sense. The penny should've dropped when I did not have the strength to lift my arms to wash my own hair; doing/hanging the washing was off limits; gardening was almost a killer. Landing on the floor that day was my first real "this can't just be RLS" thought. The first Neuro had his blinkers on; the second one actually put "two n two" together complete with family history.

BTW, I will get my butt movin and get that timeline finished for you as well Jumpy. It makes for interesting reading!

I hope i've covered everything, if not, let me know. And i PROMISE not to go so long between posts again!

Ruby....if you are reading this....are you OK girl? In my family although no news is good news, I know that you have been going through a pretty rough time yourself and I am worried about you...please let me/us know that you are ok?!

Ok, i'll shuddup now!

Take care and sweet dreams to all.

[jumpyowl]

What a nice surprise to read your post this morning, Nadia! I started to worry to the degree that I wrote you in private.

Great Spirits meet (poor translation from Hungarian). I also worried about Ruby. I am not hitting the panic button yet since she does not get to read her e-mail every day but I sure will be happy when I hear from her.

You hinted about the near tragedy around the time of your wedding several times and naturally you peaked my curiosity. Perhaps one day we shall learn the whole story!

However, right now I am enjoying your excellent post. Thanks to them and posts from others I am re-defining my view of RLS and related disorders. Right now I am just collecting tid bits of information from the experiences of several people and trying to make sense out of it.

My own experience also helps in a way that my bodily responses to the medications I am taking are quite confusing (see my own thread). I just have to remind myself not to vary the drugs too soon because then my RLS (?) really becomes confusing .

You taught me so much Nadia. I am going to look into Valeriana again, not only for me but also for my wife.

I hope that you regain the solid sleep possibly with the help of valeriana. I also notice that there are short time span changes with the effect of several medications.

RLS could be secondary as you write. It is also possible that certain RLS type symptoms are part of an other disorder. Or that (since the nerves are the controlling mechanism in many life processes), these disorders are interrelated and also quite interactive both with pharmaceutical and non-pharmaceutical interventions.

Six hours for a soup! Must be quite some soup! (I also dabble in cooking strictly as a chemist).

Serene and deep sleep! And enhanced energy levels!

[sardsy75]

Jumpy,

Below is a link to an article titled "The linking pathogen in neuro-systemic diseases: chronic fatigue, alzheimer's parkinson' & multiple sclerosis". It was posted to a CFS Support Group. I found it a fascinating read and would love to hear your thoughts on it.

http://www.consumerhealth.org/articles/ ... 0830164126

Take care of you

[jumpyowl]

Your link I also found fascinating! It is a very plausible hypothesis. Scientifically would probably be very hard to prove mainly because most of the research grants come from the governments and global companies and neither would support such an investigation.

I had a varied research career usually at the cutting edge. So in addition to the National Eye Institute, I also worked with the National Heart Institute and the National Cancer Institute. At that time I was wondering why large amounts of money were spent on relatively unlikely directions of research, e.g. viral origin of cancer instead of immunodeficency as a cause of cancer. Now I read about a plausible reason.

I am also familiar with the Gulf War Syndrome and actually dealt with Dr. Gart Nicholson (when he was still in Houston and prior to his getting his 8 million (!) dollar research grant.) We even tried the doxycycline cure for my daughter's fibromyalgia, alas it was too late for her.

I would not be surprised if our RLS/PLMD or related afflictions, all neuro-systemic diseases, would have a common origin or an underlying common denominator. We know very little about mycoplasma. But it is certainly possible! There is no question that relatively rare and strange diseases have been spreading during the past half century.

Furthermore I had an adventurous life - married late. Lived under various forms of government including a communist dictatorship and also right wing dictatorship in a banana republic. I also travelled a lot when I was younger with open eyes. There are few things I would find unbelievable about governments and human right abuse.

But I digress.

I am glad that the new approach is working for you Nadia. Who would have thought? Apparently yours is a secondary RLS, as I suspect many of them may be. Or it depends on where the weakest link in the chain or the most vulnerable spot in the body is?

There are three types of people in this world: those who can count, and those who can't...

How about this? There are 10 types of people in this world: those who understand the binary system and those who do not!

[sardsy75]

1. Maternal Grandfather - never, ever slept for any longer than an hour at a time; the rest of the night would be spent pacing around the house.
2. Mother - chronic fatigue syndrome; fibromyalgia; non-existant IGA levels (i.e. non-existant immune system) and relies on a six-weekly injection of immuno(gamma)-globulin just to stay on the right side of healthy
3. Me - a walking disaster since the day I was born (I am working on a "timeline" just for interest sake and will have it available for anyone interested) ....at the appointment, it was mentioned that each person inherits a part of their parents biochemistry and if it's not so good biochemistry that you've scored.....nuff said

Yeesh, i know my memory doesn't function well at the best of times but I can't believe i left a whole person out of the picture!

I should have included another person above, my dear Grandmother!

4. Maternal Grandmother - Parkinson's Disease and chronically scarred lungs (possibly due to three bouts of plurasy as a young woman, but noone can be sure). She has the most viscious cough I have ever heard and nothing has ever alleviated it: asthma meds, nebulizers, straight codeine...nothing!

My Grandfather (who i did mention above) was never one to discuss his medical problems. It was a good 12 months before the family found out he had cancer. It is more than likely that he too suffered from ME/CFS and definitely RLS, but, we will never know as he passed in 1997.

My mum has also often complained about her "restless legs" which usually kick in when she has stretched her available energy levels well beyond their limits.

Putting all of that together, my mum then copped the "dodgy" bio-chemistry from both her mother and father, and even though my own father is as healthy as a horse it appears that the "dodgy" bio-chemistry on my mother's side has the more dominant genes which helps explain my life-long battles.

The most positive thing to come out of my ME/CFS diagnosis is that it has actually brought my mum and I closer together. She now has literal D&M's with me about how she's feeling. Up until now she literally refused to talk to anyone about it, preferring to "suffer in silence", but I think she's found that even thought it's a bummer that's she's passed it on to me, she's now got someone to confide in who understands what she's going through and who will just listen. I have been acutely aware for years of the cocktail of drugs she has been on and only recently, very tentatively approached the subject of her cocktail with her. She has a very bad habit of taking them all in one hit at night about an hour before bed; but never sleeps more than a couple of hours at a time. I bit the bullet and suggested that she trial spreading the drugs apart during the afternoon and evening, to give the painkillers a chance to work, then the anti-d's, the sedatives and so-on and maybe getting a bit more shut-eye. After I'd explained my own "guinea-pig" experiences she agreed that it was a logical idea and would give it a go - yay!!

Signing off for now
(((((((((hugs)))))))))) to all
Nadia