Hey all

It's really weird - I've lived with this beast for 4 1/2 years and the whole time I have slept maybe 2 hours a night at best... then about once a month would fall into a sort of coma where shouting/ screaming wouldnt' wake me for about 10 hours.. tiredness was something that just came with living with RSD.

now im at uni everything is changed! i am so exhausted i dont even feel human anymore... i am getting into bed at 2am and sleeping through to 7 and I don't know whats going on. I know I shouldn't be complaining but the "extra" sleep is making me feel far worse than before when only 2 hours (ok I would complain more both ways) just my joints hurt so much more and seem to be SCREAMING at me that the joints want to die.... (i know it sounds bizarre.. suicidal limbs). They just seem to hurt so much more because i have to lie like a board in bed cos i can't turn over or move independently. Also since I started sleeping more the fatigue is worse, my motor co ordination has been shot (i can't sit at all without support now cos my brain is such a fuzz box I can't remeber which muscles do what.) and all the other symptoms of RSD are so much worse....atm i can't talk, can't swallow, can't concentrate, can't think and I especially can't be in lectures. My ability to reason has totally dissapeared. I just want to go to bed and not wake up until i'm better. It's so frustrating - i LOVE uni but at this rate I will have to drop out as I just can't handle this level of pain and exhaustion anymore....
also im just so fed up - i worked so hard to get into uni and now im here i can't do anything...l i can't go out with socs cos i feel too ill, i can't keep up with work because i can barelt see my laptop through tears, double vision and dizziness and i guess im just feeling sorry for myself.

but any ideas to help deal with exhaustion would be great! thanks and thanks for listening to my whinge! ....

love

froggaxxxx

The exhaustion seems to come with it. All part of the package. I have talked with my doc about it and there seems to be no real solution from her. Heck I climb a few steps the same ones I have climbed a million times and I am completely wiped out. Seriously it stinks. I too sleep continuously. Even after 8 or 9 solid hours I'm still exhausted. I think a combo of RSD and meds reeking hevoc on our bodies. I'm sure somone on here has some hints or tips that might help. Plus it always seems to effect women much differently than men! Go figure.

Chin Up!

Mark

Hi Frogga

(How d'you get that name, anyway?) - Sorry you're feeling so knackered, par for the course I fear. I don't have it like you do, but I do get it and simply can't work out any rhyme or reason.

Take Monday: felt terrible all day, absolutely whacked, had to drag myself through the day with many lie-downs, went to bed at 8pm...but then Tuesday comes and I'm on full charge all day. Had a major deadline for this morning, another for Friday, so can't give in to things.

Just have to chug on through it. But give yourself credit; it ain't easy to get into University in the UK, you must have worked hard, got the grades, all that...which must have cost much more personal energy than most people. You do really, really well, and have obviously done so all your life. Just remember that.

Well, yeah, the social thing; of course it's going to be much harder for you, but you sound like a funny, fun person...it'll come to you, I know it. Might take a bit longer than normal - everyone finds it hard to set up a social circle from scratch except for those few lucky extroverts who just sail through stuff (scratch their eyes out ).

Perhaps you should join a few clubs where you can just go for an hour or so...it's much easier to get talking to people when there's a focus.

I just wanted to say hey there, I think you're doing *so* well. I really enjoy your posts and I'm so glad you found us, and we found you.
Take care, all the best

and she wrote me a script for provigil. Problem for me was that I was LITERALLY falling asleep while I was driving to and home from work. That's extremely dangerous, especially given that I work 50 miles from home, and it's almost all freeway. I would find myself in the other lane, and once I heard honking as I was sleeping on the off ramp - thankfully my foot was still firmly on the brake. I couldn't take it anymore. I told my doc I was seriously considering ssd - if nothing else, simply cuz of the fact that I could not drive like that. She is a FIRM believer in trying hard to keep working...so she gave me the provigil, and also told me to start taking the sublingual B complex by sundown(?) before every meal.

I started the provigil...and I do have to say it's made a HUGE difference. I just started it last week. I haven't ONCE had the urge to fall asleep while driving. I've not ONCE felt like falling asleep once I got home. I'm more alert, and I've gotten a lot done that I've let go by the wayside.

I highly recommend speaking to your doctor about adding this. I know it's "another pill" and I was quite reluctant to start on it. My pain doc was reluctant to GIVE IT. In fact, we spoke about it on my LAST visit, and neither of us wanted to try it...but this time, both of us agreed it was "better to be safe than sorry" at least until I got this under control some other way. It very well could be that I'm like this because of the duragesic that I'm on. But, if this is what I need to do to keep working, then this is what I need to do.

The only side effect I have is that if I take it PAST noon, or at the latest, past 1 pm, I have a hard time going to sleep. It lasts quite a long time. And I've "read" that it is easy to grow a tolerance to the dose, so I only take it when necessary. I can get "by" on as little as 1/2 a tablet most days...though days like today, when I was up past midnight with cramps and pain in my hands, and have to get up at 4:45 a.m., I took 1/2 when I got up and will take another whole one at lunchtime. Some ppl get an upset stomach until they get used to it. And there is a strong odor to the urine...but only YOU smell that of course.

So...thats my recommendation.

Hope you find a solution soon. Exhaustion sucks.

As for that part above, hon...that could be from lack of sleep/exhaustion also. That tends to lead to depression (which I'm actally about to post about, cuz I'm feeling that depression also). Maybe it will get better once you get the sleep controlled...or maybe you aren't sleeping cuz your mind is on that too much???

Frogga,

LOL, your name always reminds of me a video game that I used to play called "Frogger". Sorry, but it makes me smile.

I am sorry that you are having such problems dealing with this right now. I know how awful and hard it can be. I haven't had to try to deal with exhaustion when I was trying to be a full time student, or when I was trying to go to work (I am on disability), but I have had to deal with it as a single mom raising two kids on my own for the past almost 11 years now. Very hard thing to do, when you have no family around to help you out with things like driving, or taking care of the kids or keeping things straight like when bills need to be paid or everything else around the house needs to be done (all of my family lives across the country from me), or even to try to help with kids home work. LOL, trying to figure out or remember High School Algebra when you haven't been in school for...erm....a while.....is pretty tricky even for the clearest minds. So is proof reading reports and papers and remembering proper grammar (that I usually shred and massacre here) when kids need help.

Not quiet the same situation...but I do understand, as exhaustion is exhaustion no matter who you are or what you are trying to do in or with your life.

I know that I write long posts that lots of folks skip over or disregard, so I will try to get to the point here.

You might be having worse troubles right now for a couple of different reasons. First, what you first described, the not sleeping but for a few/couple of hours a night for long period of time, followed by a very long, very hard sleep, sounded like Insomnia. This is how it affected my brother when he was younger. It never has affected me that way, and doesn't him so much anymore. We both still suffer from it, but it is different now. But, insomnia isn't normal, and you can suffer from it for many reasons other than ones related to RSD or the meds that we take to help with it. You might want to talk with your doc about this. Especially since it seems to be acting differently now, and is causing you problems.

Another thing that might be causing you trouble is that you are under a pretty fair amount of stress. Am I right in thinking that this is your first time being away to university? If I am, then that would help explain a lot. The change a lone would be enough to upset your "normal" sleep patterns, and the stress from all of the deadlines, higher work expectations, massive amounts of work the profs pile on or at least expect you to do (I know of what I speak...My Father is one of those. He got his PhD in Economics, and then went back and got a Fellowship in Finance, Insurance & Risk so that he could teach those courses also), the rapid pace of the classes....and just everything that a university is....would be enough to exhaust anyone. But, someone that already is hinging on exhaustion because they are under stress constantly from dealing with such high levels of unrelenting pain...is it any wonder that you are having some troubles pop up?

I am not sure how different the Secondary/University Education system is there in the UK from how it is here in the US. So, I might be going to ask you some very stupid sounding questions. LOL..but you never learn if you don't ask, right? Here it goes: You have terms/semesters, right? At the end of each term/semester, do you change courses? Or, do you have to take the same classes for a full "year" (fall and spring semesters) in order for that class to be completed for full credit? How many course hours do you have to carry to be considered a Full Time Student? Or, how is a "Full Time" student differentiated from a "Part Time" one? Do you have any kind of wiggle room at all in the classes that you can take or choose to take during your freshman and sophomore years? Will it hurt you in any way to lighten your course load at all at the next opportunity that you have to do so, even by a little bit? (I am talking like a class....nothing to change your student status. I am assuming that you are Full Time Student, and that you are living on campus? And that if you were to change to Part Time, even if it was one step away from Full Time, that you would stand to loose major things like Housing, and possibly worse. That is why I was asking about when you could change....if it could be this upcoming term....and if that could be possible without messing you up in any huge way. Trying to muscle through the remainder of this term....until Christmas Holiday I am assuming...is talking about doing a different thing than trying to muscle through the entire rest of the school year.)

I will talk to my Dad too, and see if he can come up with any ways that you might be able to get some help. I don't know how much he will be able to tell me, since he hasn't been in the UK system, but he has and does go to conferences all over the world....so you never know. It always AMAZES me what he knows, about just about anything you ask. The man is a walking reference book, and I am not kidding. LOL.

I do think that if you can try to lighten the stress a little that it would help you immensely with your sleep. Your are just burning your candle at both ends AND in the middle....and so your body/mind is taking every opportunity that it can to do a systems shut down to get some rest. Thing is, it isn't winding up being "Good Rest", because it is causing you stress too! Stress because it is happening at inopportune times; Stress because it is interfering with your being able to get your school work done, let alone having any social time for yourself (which is a very important part of being away at school!); and Stress because when you get knocked out like that, you aren't moving and you wake up in horrid pain, which only makes everything so much worse! You are stuck in a vicious circle. I know....I have been there and done that. I especially understand the "waking up in horrid pain" part. If I can't move around, I hurt worse. Mornings are always bad for me, but ones when I have slept TOO long, and haven't moved because of it are...well...awful. And runs of such mornings for reasons like you are having....only make me get stuck in a very bad cycle that I have to figure out how to break.

I do agree with Lisa that talking with your Doc would be a good thing. Changes in sleeping patterns are an important thing to let your doc know about. It could be that one of your medications needs to be changed. Be careful about adding more meds....because there always is the possibility of having to deal with new (and possibly worse) side effects from them. Talk to your doc, and see what he says is right for you to do. That is always the best way to go.

I hope that you finally got that Essay done that you were trying to write (or...were avoiding writing? LOL) the other day? How did it turn out?

I am sorry that this wound up being so long again. Try as I might, I simply dont seem able to keep things "Short" like other folks can. Curse of the Long Fingered and Long Winded, I guess. Ah well. On that note, I will end this here. I do hope that you are able to get some normal sleep, and that things get straightened out for you soon, Sweetie. Please let us know..Ok? We are always so proud when someone is off going to school! Kinda like a bunch of proud Mama Hens brooding and being nosey about their chicks, and wanting to know all about what they are doing, so we can sit around and brag to one another about it. ROFL. That includes Mark, who sometimes is the BIGGEST Hen..I mean, Rooster..of us all! ROFL!!

((Hugs))
Jose who hides things in her posts, just to see if anyone reads them! ROFL!!!

hey A tall one (great name btw)

Thanks! it's great to know that this is normal!!! (before deciding I had caught glandual fever or something of my flatmate) I suppose because my fatigue hasn't really been my major issue - its always the been the pain and when the fatigue has been bad it's in company with a flare..... so I couldn't do anything anyway! ...

difference between men and women is bizarre? what have you found?

Thanks! Rosie xxx

Hi artist

Thanks!!!! yeh... I just have to keep going through it and I'll get there.. I think it just feels so disheartening because until I came to uni I had paced up to being full time, and keeping up with work outside of college, and having a social life. Yet now I have a 24hr carer, academic assistants, nurses and gosh knows what I have less time and energy than I did when mum and my mates looked after me! bizarre!!

I do find that deadlines sort of help cos you have to keep focused on them and try and just plod towards it!

Frogga - when I first got RSD I ended up in hospital for nearlly 6 months... (i know) and mum bought me this giant frog to keep me company in hospital... it was great because it was one of those HUGE soft Russ ones... and anyway one of my "RSD" mates came to visit me and cos I was at physio they took a photo of the frog in bed and posted it saying it was me.

and i have been frogga ever since...

hope you are ok!!! thanks! im really glad i found b2!

rosie xxxx

hey Lisa

Wow! I'm really pleased that provigil works so well for you!! I don't think drs over here will prescribe it, but will ask at next appt (over here you see your consultant maybe once every 6 months... and are managed by a family doctor who knows nothing about RSD or even chronic pain and wonders why tylex isn't doing the job!)....

your driving sounds much safer now!!!!!!!... I'm sure there are aids which could help - you can get laser systems added for like the indicators etc so that you don' have to move your arms as much etc - could be useful???

it wouldnt suprise me if i have a minor depression atm - just it's too cold, im too sore and i have no form of proper mate support here (lots of friends, but don't know them well enough yet to go "i hate my life" without them thinking im suicidal - when in fact i just mean im fed up of having RSD and just want to whinge for an hour or so).....

it's just SUCH an isolating condition!

hope things are improving for you!!

Rosie xxxx

Hey Joselita...

Thanks!!! Firstly - the insomnia only occured after I got RSD... the problem being that every time I fell asleep my arm would touch the bed and the pain would wake me up... and as the RSD spread so did the lack of sleep (unfortunalt I haven't learnt how to levitate so this can go on for hours...). It's worse now because of having to be turned etc at night as I have basically no movement at all (well I can move my shoulders and I have slight movement in my neck and i can move my wrists a little bit but thats it) so everytime I'm turned it hurts so much!!! that then you have to wait hours for the pain to calm down enough to sleep etc etc....

Unis. Well... I am at once of the best in the country - I needed AAA to go to there..- for psychology it is number one or something. Anyway - the way it works is I take 5 courses - controversies in psychology (a seminar), effective education (1 lecture), mind and behaviour (1 lecture), core skills for social scientists (1 lecture) and laboratory skills (1 lecture). This is the minimum I can take to get the credits. I can take new units next term - instead of my GAU (generally available unit - which is effective education). I have to take all of these in order to get enough credits to finish the year.. (something like 60 credits a year are needed). I am full time and live on campus. I have lots of support from learning support etc - note takers, academic support workers (who do library stuff/ type essays/ gather resources/ hand in work etc) and I have a full time live in personal assistant to manage all my personal care needs.

I think the main issue with the exhaustion is that it has come on quite suddenly.. I'm used to fatigue with the RSD but not this type of bone dead weariness where doing ANYTHING is exaughsting. I know what you mean about the fuzzy headiness though! i hate that.... it just really frustrates me!! just because before RSD I would have kept up easily!

I used to take things like amytriptylene to help regulate my sleep patterns but stopped it because of side effects. I have been thinking about it recently and I think that the main reason for my exhaustion is that I was lazy over the summer. I had paced up to full time etc and then over the summer spent alot of time in bed (I damaged my neck so had to be flat for quite long periods) and so before I started uni I had only been sitting upwards for perhaps 4 hours a day... (even though I'm reclined it's still tough!) and suddenly going to sitting up for about 16 was just abit much - and to avoid a flare up I have just been plodding - so I think that's why I'm now so tired as my body is trying to tell me to slow down!!

I think you're right and stress does play a large part in why I am feeling so tired.... I have a huge workload and being a perfectionist I won't let anything slide because not only do I want the essay to be done, I want it to be the best. (therefore it really does take me about a million times as long).

Tonight I have decided that I have had enough. I am going out with a friend to have coffee and just chill for a couple of hours and when I get back I will then go to bed. instead of what i normally do which is get into bed and start working....... (its really bad I tend to sleep for abit, work for abit, sleep for abit, work for abit all night).

it must be really tough bringing up 2 kids on your own and having the silly RSD!!! It's hard enough being a teenager with it! I couldn't handle the responsibility!

by the way - lol on the long posts... I do the same! Oh.. and I LOVED Frogger the game - it was such an inspired game! it was brilliant! I think I may still have a copy. did you finish it? i finished everything but that blasted forest level with the killer squirrels and bees!

Thankyou though!! lol..... its nice having a load of "RSD mums" (seriously.. my mum is great, but try and explain to her why I'm struggling and she's like..... well you knew you would...

thanks! and I agree - Mark is a mother hen!!

Rosie xxx

Frogga: Have you ever been checked for hypothyroidism? It may be a good idea to rule it out. Just a thought. Regards, Lil