RLS LIFE: Drugs, Side Effects & Everything Else

[sardsy75]

But then again ... a case of PMT, "Foot in Mouth" (poor hubby!), and a bad case of wanting to chop your legs off at the neck kinda does make the days seem to drag on ... and people wonder why I say "I keep odd hours" (particularly when they're your clients and you mention that you finished and balanced their bank statement reconciliation at 3am that morning )

Back to the PMT for a minute though ... I have been keeping a separate diary to this one ... very much like the one Jumpy has just started for himself actually ... and had noticed a pattern forming earlier this year ... you guessed it: PMT week = "mega-downer week" for legs. HOWEVER, this monthly "occurrance" has/had strangely ceased after I quit all the "cocktails" and switched to the Endep/Elavil back in May this year.

However, again, I'm not sure that this "episode" which is well and truly into it's second week (i'm losing count of the days now) is related to my PMT which was coincidentally this week. If that made no sense, I don't apologise LOL I will have to go back through my other diary and see if there's been another pattern emerging at all; but I'm pretty sure there hasn't.

ARGH!!!

No, I'm not stressed about anything out of the ordinary at the moment - couldn't be happier actually! Well, apart from my legs buggin me, but I do my best to keep my mind off them (hence the "major surgery" on the questionnaire - Jumpy, you put that so eloquently!).

No, I'm not overworking and therefore making myself overtired & kicking in my ME/CFS, even though I have picked up three new clients in the past couple of weeks, I have sorted out my diary to suit ME, not them.

No, I haven't been on the grog, caffeine OR milk.


I am making absolutely no sense whatsoever, and i know it. I will attempt another update tomorrow, hopefully a little more "with it" then.

Would tell you my current drug regime, but i don't really have one that's working right now, so you'll have to wait for that one

*Sigh* Think i'll go do some more "scrapping" ... the pictures I took at a friends wedding last weekend came out perfectly and inspired me to be creative. It'll take my mind off my legs for a while anyway.

Take care all!

P.S. Jumpy, I think about my "family" in here everyday, knowing that even though i'm on the "underside" of the planet, they love me anyway! I DO feel all the cyber-thoughts/hugs/prayers that you all send and you all know that I send them right back whenever they're needed.

[jumpyowl]

I feel the same way. So much so that on the General Topics Forum I posted a fairly long post. Toward the end I mention the idea of forming a Cyber Support Group using this Discussion Board as a place to meet and exchange ideas. Take a look and give it some thought when you feel like it.

You may want to know that both Sarah and Jan viewed the questionnaire and approved of it. Tom is enthiusiastically working on the placement and publishing of the LIFE WITH RLS on his website.

Now have a relaxing night, better than I just had.
((((( )))))

[jan3213]

Hi Nadia and Jumpy, it's Jan

I know I'm butting in AGAIN, but just had to add my, what it is, up to 4 cents worth now? I don't know how often I've asked my hubby to chop my legs off lately!!! I HAVE had an enormous amout of stress in my life lately (which is totally out of my control and which would most likely drive anyone to drink!!). Anyway, Nadia I can fully understand working on something or being up at all hours of the night!! My husband says "just go to sleep!!" Wouldn't that be nice!! Jumpy, I think your idea of a Cyber Support Group is wonderful. The forum is nice and has been such a help, but having a place just to vent (I assume that's what you are talking about) and to seek emotional support (?) and using this board for what it's meant for is a great idea!!! Just thought I'd jump in!!! You two don't need my opinion, but I liked your idea and wanted to tell you!!!

Have a good night, both of you!! And, don't let those bed bugs bite!!!

Jan

[sardsy75]

My dearest Jan .... you know that I ALWAYS welcome your thoughts, opinions, advice and humour; so as far as I'm concerned, you NEVER butt in (I think that came out right LOL!)

I had the rottenest night last night, the worst I've had for a loooong time, months even. Breakfast was 1mg Cabergoline, Morning Tea was 5mg Diazepam and for Lunch I think i'll go for another 1mg Cabergoline They're STILL going ... and I reckon I'll have lost a few more lbs before the weekend is out from all my wriggling and stretchin

I eventually took myself to bed at 1.45 this morning and probably scored a grand total of one hours sleep, if that. I spent most of the night wide awake, wriggling, stretching, kicking and at the same time trying not to give my dear hubby a reason to throw me out I eventually crawled back out of bed at 9 this morning (actually, I didn't really have much choice .... 10kg of Cat (Fidget) in drooly, snuggly mood, complete with fish breath, sitting on your chest, nose to nose with you and pleading for food, is enough to get anyone out of bed!)

A good sign that I'm having a rotten time is when I can "sit" (don't ask me how!) and design up to six scrapbooking pages in one sitting. I think it's the whole concentration thing; I did a fair bit of beading on a couple of the pages last nite and it was a great way of taking my mind off my legs.

Just had a thought Jan ... the next time your hubby says "just go to sleep" ask him to give you a head "scratch" or just gently massage your head with his fingers. It sounds strange I know, but it is often the only way my hubby can settle/relax me enough to fall asleep (I didn't have the heart to wake up him last nite tho, he was soooo out to it!).

Hmmm, 12.30pm .... time for a lunch of Cabergoline!

Gotta luv this!!!

[jan3213]

Nadia, it's Jan

LOVED YOUR SUBJECT LINE!!!! LOL I know what you mean about keeping your mind busy!! I've worked on my window quilts at 2 a.m. Problem is, that's not necessariliy "quiet" work!! (Electric sander, electric stapler!)LOL Hubby HAS scratched my head (feels great). Unfortunately, HE falls asleep BEFORE I do! Lately, I've had to sleep on the couch in our family room because I hurt all over and need support on my back. Gotta see what's going on there--will do that shortly, but, as I said, we have other fish to fry right now that will burn if we don't take care of them!!! I WILL take care of ME though, so don't worry!!!! Actually, today was a pretty darn good day!! I always get a kick out of your posts, too!! Gotta give you a bit of advice--DON'T FALL ASLEEP ON A HEATING PAD if you know what I mean!!! My left hip won't be the same for awhile!! Now EVERYONE will know what a ditz I am!!! Oh well, at least you all will get a chuckle out of that one!!! Gotta tell you, though, you win the prize for the least amount of sleep lately! As if you wanted to win THAT prize!!! LOL---- ONE HOUR!!!!! I thought THREE HOURS was bad!!!! Have you ever fallen asleep in your computer chair? Oh the stories we could tell!!! I know what you mean about being awakened by a pet. Just when I get to sleep, guess who decides he wants to play or cuddle or go outside--you guessed it--Prince William!!!!! For those of you who don't know, I'm talking about our Jack Russell Terrier, Willie. He owns our house, he just lets us live in it!!! Nadia's seen a pic of him. Anyway, Nadia, hope you have at least two or three hours sleep, and if we ever get that support group going, some of us will keep it hopping!!!

Jan

[sardsy75]

Think i'm gonna get that prize for the least amount of sleep in one nite again

My diet today consisted of:

Breakfast: 1mg Cabergoline
Smoko: 5mg Diazepam
Lunch: 1mg Cabergoline
Smoko: 5mg Diazepam
Dinner: 1 mg Cabergoline
Supper: 30mg Endep/Elavil; 2 x Nurofen Plus; 5mg Diazepam

Basically, enough to flatten an elephant

I had an ever so brief reprieve of pure bliss for exactly 3 hours late this afternoon ... however, they're now back in FULL swing; and just for the record ... stairs, no matter how many of them their are, are NOT my best friends at this present time ... and we live in a two storey house

Well, i'm off to bed (it's going on 12.30am now), maybe not to sleep, but at least shut the eyes and make a bad attempt at creating the illusion of sleeping

Nite all!

[sardsy75]

I wake up in the mornings ... legs are in full "get me a chainsaw" mode. Actually, let me rephrase that slightly ... they're in full swing by about 4 - 5 am.

So, I start with the Cabergoline 1mg at breakfast, then if needed another 1mg at lunch. I'm staying away from the diazepam during the day at the moment as I'm working, so I kinda need to be at least half awake (or look like i'm half awake anyway).

By about dinnertime, my legs have settled and by bedtime when I take the rest of my meds, they're back to being very very mildly annoying; and I fall asleep. For the past couple of nites i've managed to get about 3 - 4 hours sleep ... in short snatches here and there.

Am I going in the opposite direction or what???

This is truly nuts!

[sardsy75]

OK, I think I've just figured out what's made my legs go ass-about for the past i don't remember how many weeks ... change in air-pressure!

I know ... sounds stupid huh?! BUT ... I remember having the same thought about this time last year when everything went ass-about after being so good for so long.

At the time, I mentioned it on the Yahoo RLS Support Group, and there were a couple of people who actually agreed with what I said. One lives in Sydney, the other in "Middle Earth" as he likes to call it (New Zealand). It's the beginning of our "Summer" (will be 36 degrees celcius here tomorrow BTW ) and we get extremely HUMID summers, actually, lemme rephrase that slightly, we go straight into extremely humid spring which then rolls into an even more inhumanely humid summer; and THAT's what I think kick-started this period of problems.

I remember now that hubby and I actually did an experiment for a few weeks late last year during the hurricane/cyclone period to see if the sudden changes in air-pressure had an effect on my legs ... and YES, it did!

We've just gone from a very very "dry" winter to very very humid and warm days ... and it's the change in the air-pressure that's the key.

Now, before y'all go running for the straight-jacket for me ... remember that I also have ME/CFS. My mom has ME/CFS and Fibro. As much as she doesn't like to admit it, mom has done her fair share of reading and research and when I was speaking to her earlier tonight she mentioned that she went downhill in a big way a few weeks ago also ... almost the same time that I did.

In at least three medical books mom has read on both Fibro and ME/CFS, it has been stated that a change in the air-pressure from dry to humid can have an adverse effect on people who suffer from Fibro and ME/CFS and she can't see why this couldn't affect those of us who have RLS and live in humid climates as well. (BTW, I'm going to find out which books those were mom was referring to)

OK ... lemme have it! I want to know if anyone else thinks I'm onto something, or if I really do need a straight-jacket (or maybe just a good old fashioned holiday!)

[jumpyowl]

that you are onto something. It will not be the only factor (it never is) but could be an important one. I will help you look into it, Nadia. Pass the references.

Fondly,

[sardsy75]

It's going to be a loooong nite ... again

Legs are going wild!

But, I digress ... have been ferreting about the online catalogue for both local Library and University Library and have come up with quite a number of books to check out.

Checking them out will keep me occupied for a good day or so!

Will keep you informed of what I find.

[Heronak]

Well you may be nuts, Nadia, but I'm sure you're on to something! Barometric pressure affects all sorts of things from arthritis to moods to migraines - and I'm sure there's more. Why not RLS too? Best,

Heron

[jan3213]

It's Jan

I, for one, NEVER think you're nuts, Nadia. I just wait for your brilliance to shine through (that's definitely NOT scarcasm!). Whom do you think I'm talking about when I'm referring to one of our members being great at researching as I'm welcoming a new member? Duh! Could it be.....NADIA? I'm always reading your diary or your comments to see if something you say can benefit ME, Nadia. So, no you're not nuts! Maybe a little goofy on Girls' Night Out! But, definitely not nuts!!! LOL

Heron's right. Barometic pressure effects a lot of things. I broke my foot about three years ago, and when the pressure changes, it still gets a twinge in it. So there!!!!!!!!! LOL

Jan

BTW How're your cats?

[Sara]

Hey, Nadia--

You know I won't laugh at this... I'm the one who brought up elevation as an exacerbating factor! Makes good sense to me, and we're about to have a big change in our barometer, too, so I'll pay more attention. Like Jumpy-dear said, not the WHOLE issue, I'm sure, but sounds like a likely contributor to this latest flare up.

Take good care!
Sara

[sardsy75]

OK, I think I've just figured out what's made my legs go ass-about for the past i don't remember how many weeks ... change in air-pressure! (and I should have added Humidity!)

I know ... sounds stupid huh?! BUT ... I remember having the same thought about this time last year when everything went ass-about after being so good for so long.

At the time, I mentioned it on the Yahoo RLS Support Group, and there were a couple of people who actually agreed with what I said. One lives in Sydney, the other in "Middle Earth" as he likes to call it (New Zealand). It's the beginning of our "Summer" (will be 36 degrees celcius here tomorrow BTW ) and we get extremely HUMID summers, actually, lemme rephrase that slightly, we go straight into extremely humid spring which then rolls into an even more inhumanely humid summer; and THAT's what I think kick-started this period of problems.

I remember now that hubby and I actually did an experiment for a few weeks late last year during the hurricane/cyclone period to see if the sudden changes in air-pressure had an effect on my legs ... and YES, it did!

We've just gone from a very very "dry" winter to very very humid and warm days ... and it's the change in the air-pressure that's the key.

Now, before y'all go running for the straight-jacket for me ... remember that I also have ME/CFS. My mom has ME/CFS and Fibro. As much as she doesn't like to admit it, mom has done her fair share of reading and research and when I was speaking to her earlier tonight she mentioned that she went downhill in a big way a few weeks ago also ... almost the same time that I did.

In at least three medical books mom has read on both Fibro and ME/CFS, it has been stated that a change in the air-pressure from dry to humid can have an adverse effect on people who suffer from Fibro and ME/CFS and she can't see why this couldn't affect those of us who have RLS and live in humid climates as well. (BTW, I'm going to find out which books those were mom was referring to)

OK ... lemme have it! I want to know if anyone else thinks I'm onto something, or if I really do need a straight-jacket (or maybe just a good old fashioned holiday!)

I rediscovered the town libraries the other day, did some research the good old fashioned way and came home with an armload of books on CFS & Fibro of which I've since been meandering through to see what I can find in relation to the weather and its effects on illnesses.

While I was ferreting through the shelves at the libraries, it struck me as odd that althought RLS has been a known medical condition since the late 1600's, there are no books to be found. Plenty of research papers, but getting accesss to them can be like getting blood from a stone if you're not a member of some sort of medical fraternity.

Back to the research and experiment at hand though ... humidity AND barometric pressure changes both play a part in the exacerbation of both CFS and Fibro ... so I can see no reason why it wouldn't be an exacerbating factor for RLS.


Personal Author - Starlanyl, Devin. & Copeland, Mary Ellen
Title - Fibromyalgia & chronic myofascial pain syndrome : a survival manual
Edition - Rev. ed.
Publication info - Oakland, Calif. : New Harbinger Publications, 2001, c1996.
Pages 53 - 54

Perpetuating Factors

Sensory Changes: These changes include the change to and from daylight saving time and weather changes like barometric and temperature pressure fluctuations, dampness, humidity, and drafts. A hyperactive nervous system can increase any kind of hypersensitivity. If this is the case for you, dress defensively in coll environments, and especially be careful of drafts; cold plus wind equals TrPs. Some days, rain hitting your window may feel as if it is pounding against each of your cells. Heat and high humidity can also be a perpetuator of pain, especially when the pain is augmented by swelling. Body warmth is important. When your muscles are cool, they contract to generate heat, and the added tension aggravates TrPs.


Personal Author – Berne, Katrina & McIntyre, Anne
Title – Running on empty: practical strategise for coping with ME
Publication info – London: Bloomsbury, 1992
Page 70

Exacerbations: Triggers

Exacerbations may be triggered by changes of almost any kind – physical, emotional or environmental. Some of the factors that can precede relapses are:

• Changes in weather (especially abrupt or severe changes), temperature, barometric pressure, altitude, humidity or general climate.


Personal Author – Chaitow, Leon
Title – Fibromyalgia and muscle pain: what causes it, how it feels and what to do about it
Publication info – London: Thorsons, 1998
Pages 1 - 2

The symptoms of Fibromyalgia and the Illnesses Associated with It

The commonest symptoms of Fibromyalgia and conditions associated with it are:

• Almost 100 per cent have fatigue and badly disturbed sleep
• Almost 100 per cent find that the symptoms are usually worse in cold or humid weather
• Between 70 per cent and all sufferers have depression
• 44 – 56 per cent have severe headaches
• 30 – 50 per cent have Rayanud’s phenomenon
• 12 per cent have osteoarthritis
• 7 per cent have rheumatoid arthritis

Other conditions extremely common among Fibromyalgia sufferers include allergies, chronic rhinitis, bruising easily, night cramps, Restless Legs Syndrome, dizziness, sleep apnoea …


Personal Author – McIlwain, Harris, H. & Bruce, Debra Fulghum
Title – The Fibromyalgia handbook: A 7-step program to halt and even reverse Fibromyalgia
Publication info – New York: H.Holt & Co., 2003
Pages 254 – 255

Questions Patients Ask About Fibromyalgia

Q. Why does my Fibromyalgia seem to act up when the weather gets cold or very humid? My husband says I am imagining this, but I know its true.

A. The effect of changes in weather is real. Those with arthritis or any type of chronic pain will notice higher levels of aches and pains during inclement weather or when weather fronts pass their locale. In fact, about 60 to 70 percent of patients notice changes in their pain with weather changes.

Fibromyalgia is one of the types of arthritis most sensitive to weather changes. Some researchers even include this as a characteristic part of Fibromyalgia. The most common weather changes that can affect pain control are barometric pressure, humidity and temperature. Most patients find that their pain is worse when these weather conditions change, whether the conditions are good or bad. Some patients feel with cold and rainy weather with low barometric pressure, whereas others feel worse under the same conditions. Still others may not notice any difference with the weather.



As I have just posted to Jumpy in an email, my legs are going helter-skelter already (it's only 8.45am) and I've just checked the BOM (Bureau of Meteorology) site which has a continuous record of the past 72 hours.

I have discovered that if the relative humditiy remains Under 60% i'm fine ... however ... if it goes Over 60% I have real problems. Even though we are now sleeping with quite cool air-conditioning at night, my legs still "know" what it's like outside the bedroom door, and between 2.30am and 6.30am this morning it was up over 70% nearly to 80% and I was starting to go crazy. I even managed to wake hubby up, who did his best to calm me down.

*sigh* Patience is a virtue ... and if last year is anything to go by, I think I'm going to need an early Christmas present of some extra patience.

I will keep searching to see if ANYTHING has been written about the link between the weather and RLS.

I have settled on a "cocktail" for the moment which includes:
- 1mg Cabergoline for Breakfast
- 1mg Cabergoline for Dinner
- 2 x Nurofen Plus (Codeine/Ibuprofen) for Supper
- 5mg Diazepam 1/2 - 1 hr before bed
- 20mg Amitriptyline 1/2 - 1 hr before bed
- 1 x BioMagnesium
- 1 x Women's Multi-Vitamin, Mineral & Herbal Formula

Have to ring my gatekeeper, Dr K today and order some more repeat scripts. Methinks he's not going to be too happy about the cocktail i'm on! Oh well.

Better go get ready for work.

Take care all!

[Sara]

Nadia, honey--

Great research, and serendipitous for me that you posted when you did. Jan and I were talking today about my RLS symptoms being so strong, and I just remembered the front I said was coming, has passed through. Not sure the exact barometric pressure right now (my barometer's on the blink) but there's no question about that change. Hmmmmm....

Oh, and interesting, too, about what you quoted about keeping warm. I think it was in a tai chi/chi gong reference, but I read a few years ago that the Chinese believe that it's important to keep your body warm, especially around your vital organs. I have found that this feels very healthy for me, too. I live in a warm climate overall, but high enough elevation that even summer evenings sometimes warrant a sweater. I always put it on now, and I think I feel better (generally, not specific to RLS) for that. And I've also mentioned here, I'm sure, that having cold feet is worse for my RLS, so I don't allow them to get cold if I can help it.

Thanks for sharing your hard work, Nadia!

Sara