View Full Version : Really thought I was all better


tudorose
02-07-13, 07:46 AM
So I've been dealing with this RRV (like CFS) since July 2011. Lately I had been feeling better. As it can last from 2 months to 2 years (so they say) I thought that after the 18 month mark I was all clear. I could do more, felt better etc...

So I had started riding to work again (48km per week - one day in and another day out) to try and regain my lost fitness. I had also increased my general activity levels at home and at work.

Then last weekend DH and I went to IKEA. I guess that was just too much. I rode to work on Monday after pretty much not stopping all weekend and felt terrible for the rest of the day and pretty much every day since.

I've been coming home and getting into my skins compression gear every day this week but my muscles and joints are still aching and the sporadic nausea is back too.

I'm trying to work out whether I just over-did it. Whether it's PMS related, maybe because I ate some cheese (aggrevates the symptoms) or some other cause.

I'm just really disappointed coz I thought I was fixed. I'd been going around telling everyone I was fixed and just trying to rebuild my fitness but that's just not the case :(

I just want to be better and this is so demoralising.

I'm not injured but my right hand hurts so much in the bones that I couldn't even use it to wash my face. I can't ride my bike home from work because I can't squeeze the brakes so DH is going to have to drive the car in to work tomorrow so I can pick it up.

Thing is because this has gone on for over 18 months if I went to a Dr they'd probably dx with CFS but I haven't been coz I don't want yet another label.

The naturopath I see uses the same treatments for this and CFS. The only difference is that this is post viral fatigue which can be attributed to the virus rather than unexplained fatigue.

I just hate feeling this way. I don't like being unable to use my hands / having either freezing hands or swollen elephant hands. I don't like the burning in my muscles and the pain in my bones.

If you've made it through to the end of this post thanks for listening. I guess I'm just sulking. I try to be hopeful but this feels like it will never end and I soooo want to be better again.

Lunacie
02-07-13, 11:10 AM
I'm so sorry to hear you've had a relapse. (((hugs)))

My Fibromyalgia has gotten so much better over the last few years that

I'm always floored when I have a relapse.

Since you've learned to pace yourself better and have been using the

treatments, hopefully this relapse will be mercifully short.

SquarePeg
02-07-13, 01:51 PM
48km per week, i think thatīs too much. From my cfs day (and I think we chatted about this) there is the temptation to do to much at once just because you are feeling good, and completely forget how ill you can feel.

The after effects of too much activity donīt have to come the next day, they can appear 1 week later, especially if the activity is continued.

I know you are feeling down but, rest again and when you feel better do some very light activity on one day and may be something else 4 to 5 day later. You need to take it really slow even if you are feeling good.

Be optimistic but patient otherwise in the end it may take longer to recover because you have rushed.

I remember feeling I would never recover and that I had the mind of 23 year old trapped in the body of a 90 year old, it was awful. I am not 100 per cent and I doubt I ever well be now (or maybe itīs just age) but I know my limits and if I have been burning the candle at both ends, I know that I need to take it easy for at least 3 week.

I hope your hands get better, I used to have problems as well but thankfully they are ok, they got so weak, I could barely use them.

salleh
02-07-13, 02:43 PM
Recover is such a pain .....and perhaps the hardest part when you want your life back .....when you're feeling like s***, you just want to stop feeling that way .....but you are aware of the stuff that you have left behind .....but it's mostly just "please make this stop "

.......But when you start to feel yourself again ....that's the tricky part ....because you aren't really there yet ......and since you want it so badly, you convince yourself that nothing happens and everything is good to go ......


....Now you know .....it doesn't work that way in some cases, especially with the length and severity of your health problems .....

...You have to kind of think about it like having a broken leg, it may have stopped hurting the way it did in the beginning .....but it is still not able to bear your weight ......and by putting your weight on it too soon ....you not only run the risk of breaking it all over again, but you can even make matters worse than it was in the beginning .....


.......and from what Squarepeg says, it won't give you instant feedback ....it can SEEM ok, and then swoop in on you a week later .....that makes it doubly hard to judge how far to go in your exertions .....

.....I hate it that you're hurting .....and this is another time here I wish I had a magic wand to wave in your direction ......all better !


....but please dial it back......you now have proof that your body isn't ready to go full bore yet ......perhaps a schedule ...literally .....get your calendar out ....and map out a timetable for each step you are going to take .....

and leave plenty of time between each jump up to the next step ....let your body get used to being on that level......I don't know how long you should spend on each level .....but whatever you decide .....maybe double that ! ......


It's very hard to FEEL normal......and not act as you normally would ......but if you do that ......you're going to take a lot longer to fully recover ......and you really don't want to do that ......

....and especially in the beginning .....take baby steps ...... srsly ....

....I take it you don't have one doctor overseeing your problems ? .....you really might want to re-consider that if those slow baby steps doesn't work .....


None of us are doctors, and even if someone has something like your problems, every persons body is different ......and since your problems are so severe, and now you have pushed yourself into a relapse of sorts ....it just seems to me that it is time to relent and see someone who can oversee everything ......



I really hate going to doctors ( and I am a doctors daughter .....) I have a serious aversions to strangers poking and proding at me ....so I understand that reason....and the political problems, what with work and all ....but you should at this point, weigh the pros and cons of seeing someone.....


....srsly ......

crystal8080
02-07-13, 03:09 PM
so sorry to hear this tudorose..i hope its just cause you did too much too soon and not anything more serious. and just because you have to take a step back doesn't mean you have failed. and you can sulk all you like :)

stef
02-07-13, 03:32 PM
hey i would be sulking too....
maybe the biking was too much?
i wish i had some advice, i hope you feel better!

anonymouslyadd
02-07-13, 08:13 PM
I know how frustrating it is to feel like you've moved beyond something and have it come back.:(

(((((hugs)))))

Rebelyell
02-07-13, 10:26 PM
Are you sure its just not the intense heat?Are you hydrating and drinking enough water?Co worker is always on me for that says it lubricates the joints/skin and even tho ya drink water ya think ya drank enough but by the time your thirsty your dehydrated.Im not dismissing your Fibromalgia CFS either.I know the heat extreme cold makes me nauseous,tires and weakens me out.

tudorose
02-08-13, 06:19 AM
48km per week, i think thatīs too much. From my cfs day (and I think we chatted about this) there is the temptation to do to much at once just because you are feeling good, and completely forget how ill you can feel.

The after effects of too much activity donīt have to come the next day, they can appear 1 week later, especially if the activity is continued.


Ahhh. Yes I didn't think about this but I think you're right. If I am going to ride I absolutely MUST rest ALL weekend.

Also if I feel any minor symptoms I should not get on the bike at all.

I've just started keeping a log of how I'm going using colour ratings and writing down trigger events like eating cheese, no rest on the weekend, riding to work, and emotional stress. The triggers of food followed by not enough rest followed by physical stress from riding, and finished off with the emotional stress I could see the decline. I'm just lucky I have an understanding workplace that will help me through these things rather than making it worse.

I think that by documenting how I'm feeling on a daily basis I might be able to prevent things getting so bad. When my hands started swelling I should have taken that as an indication to stop and rest until it goes away.

I guess as much as I keep stuffing up I guess it means I'm getting more learning opportunities.

Thanks for the tip about the after effects taking a while to kick in. I really need to look at my overall activity levels to make an accurate assessment about how much I can really do.

I think it's gonna take a while.....

tudorose
02-08-13, 06:23 AM
Are you sure its just not the intense heat?Are you hydrating and drinking enough water?Co worker is always on me for that says it lubricates the joints/skin and even tho ya drink water ya think ya drank enough but by the time your thirsty your dehydrated.Im not dismissing your Fibromalgia CFS either.I know the heat extreme cold makes me nauseous,tires and weakens me out.

Actually I've been feeling extremely cold because of the air conditioning. I've been really good on the water too - 3 litres a day!

But I know what you mean. It's easy to get dehydrated. I pretty much carry a water bottle with me everywhere I go and when I do ride I have a camelback I use and I fill it up with cold water.

SquarePeg
02-08-13, 12:33 PM
Have you heard of the phone app called ActiveME, to help chart activity. You have to chart everything from watching TV, chatting on the fone, hairwashing to sports and high energy stuff. It sounds good.
I think you can then work out what your baseline energy should be and stick to that for a few weeks before increasing. Itīs easy to increase without realising, even going to the shops or taking the dog out counts.

I donīt know if you can chart food on it though, would be a shame if you didnīt. It does seem to have itīs flaws though.

I attach a link for a simpler paper version.

Hope it helps
www.epsom-sthelier.nhs.uk/.../GatewayLink.asp.. (http://www.addforums.com/forums/www.epsom-sthelier.nhs.uk/.../GatewayLink.asp..)

tudorose
02-09-13, 08:36 AM
Have you heard of the phone app called ActiveME, to help chart activity. You have to chart everything from watching TV, chatting on the fone, hairwashing to sports and high energy stuff. It sounds good.
I think you can then work out what your baseline energy should be and stick to that for a few weeks before increasing. Itīs easy to increase without realising, even going to the shops or taking the dog out counts.

I donīt know if you can chart food on it though, would be a shame if you didnīt. It does seem to have itīs flaws though.

I attach a link for a simpler paper version.

Hope it helps
www.epsom-sthelier.nhs.uk/.../GatewayLink.asp.. (http://www.addforums.com/forums/www.epsom-sthelier.nhs.uk/.../GatewayLink.asp..)

Good idea

I can't open the link though.

SquarePeg
02-09-13, 08:49 AM
Good idea

I can't open the link though.
Sorry, if you search Google and type

"completing an Activity, Rest & Sleep Diary/Chart - Epsom and"

Exactly as above, it should be the first entry, itīs a PDF file

hope it works.

dresser
02-11-13, 11:59 AM
I send hugs but only use them after you're body feels better, pain is not where anyone should be, althow it sounds like youre getting a system in place, along with guide lines
now dont be like me and ignore you're desingh, I have a desingh also the diff tween you'res
nd mine?? mine has a should in front of everything ie:sitting in my big comfy couch moanin N groanin even with pain killers watchin the tube and my Inversion table N sayin it works get on it mmmmmm. it's only 6 feet away ??? go figure so get well soon we do care