New here, but just diagnosed with CFS

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Shaper
Regular Member


Date Joined Jan 2006
Total Posts : 23
   Posted 1/9/2006 9:07 AM (GMT -7)   
Hey to all out there!! i hope that the new year went with a bang and like me you weren't curled up in bed!! Been diagnosed with CFS came as quite a shock to me, but it took some deliberating by various doctors to come to this conclusion. Now that i know what i'm up against, I'm having problems coming to terms with it. It happened so fast, with in a couple of hours one evening, it changed everything. I'm normally fit and healthy and participate in a variety of sports, from cycling to surfing. but for the last 4 months I've been unable to do anything. I know that i dont have the worst case out there, but if anyone could give any words of wisdom or just to shed some light on CFS or just to chew the fat. All help will be gratefully recieved
Aloha

Foreign
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Date Joined Jul 2004
Total Posts : 674
   Posted 1/9/2006 12:17 PM (GMT -7)   
Hello Shaper... Welcome to our forum :)
I myself do not have cfs I have Fibro...So i'm not very knowledgeable on the topic but the site is full of knowledgeable people...
try to pop in a chat someday...
Hope to see you around
Mel
Co-Moderator for Fibro
Moderator for CFS
Please make HW donations @: http://www.healingwell.com/donate


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 1/9/2006 3:20 PM (GMT -7)   
Hi Shaper. I usually post on the lupus forum because that's what I seem to be primarily dealing with, but a long time ago when I was in college, doctors thought I probably had CFS. Fortunately after a while my symptoms got fairly mild and I was able to live a fairly normal life. Like you I had been very active - into running and sports. The only problems a had was that once in a while my body would crash and I'd end up in bed for a few days. Then two years ago I got really sick. A lot of my symptoms and labwork point to lupus, but I'm also sure that my CFS is probably full blown too. I find the only exercise I can tollerate is some light walking and gentle pilates (I still hold onto the hope that I might run again someday). I do know that some people respond fairly well to some meds that can help with CFS symptoms, but others don't have as good results. Were you offered any meds? The other thing I am trying to learn is balancing rest and activity. By activity I mean the normal everyday things that most people do. I am trying to learn to listen to my body and rest when I need to. The worst mistake I make is overdoing it on days I feel good and then my body usually ends up crashing. Take care and I'm glad you decided to join the forum.
Dx:  Suspected Lupus 2004, CFS 1991
Meds:  Plaquenil 400mg, Tramadol 100 mg 3x day, Amitriptyline 10mg, Neurontin 300mg


snohare
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Date Joined Oct 2004
Total Posts : 2088
   Posted 1/9/2006 7:01 PM (GMT -7)   

eyes  Oh dear, yet another exercise addict bites the dust.... tongue

Welcome to the forum, Shaper ! I'll try to be brief (for once.)

  • nono  You will undoubtedly do too much when ever you feel fine, and then feel awful. The trick is to treat it like bodybuilding - you need to push yourself, but not too hard.
  • If you are having problems sleeping, cover your eyes in a way that excludes all light, and you will get to sleep. (That's how sleep researchers send people to sleep - everyone sleeps in the dark.) If when you wake up you feel even more tired, that's a sign your immune system is playing up. Not much you can do about that, except maybe try checking for food intolerances.
  • Avoid sugar and other refined carbohydrates, plus caffeine. Junk food of any sort is a real no-no.

 It can be pretty demoralising I know, when you've been so active beforehand, but you are at least light years ahead of the game compared to many, simply by having a diagnosis and being online at this forum. So don't sell off the sports equipment yet.... yeah


Shaper
Regular Member


Date Joined Jan 2006
Total Posts : 23
   Posted 1/10/2006 1:47 AM (GMT -7)   
Thanks for all the info. All that has been said rings true to my life. i did indeed push my body to crashing point when i was feeling better. I ended up eating asphalt as i blacked out on my bike and spent some time in hospital...ouch!
I find i spend alot of time on my back as i just dont have the energy and the tip about sleeping will be a help as i've had trouble sleeping. I also hold onto the thought that one dayi'll be back on my feet doing everythiny at full speed like it use to be and i cant bring myself to sell my 20 surfboards( it's a passion of mine and i make em!)! but as one of the replies says, it's taking it slow and taking each day as it comes.
I have one question. That is, apart from close family and friends who understand what your going through. Does anybody else get strange looks from others, when you tell them? the look that says " you idle sod, get of your arse and stop being lazy"!! it's happened when i told my work collegues. has it happened to anybody else?
take it easy
Aloha

snohare
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Date Joined Oct 2004
Total Posts : 2088
   Posted 1/10/2006 5:37 PM (GMT -7)   

eyes   yeah eyes Ohhhh, allll the time !! People fall into several categories:

  • People who are close to you who understand or have faith in you, and are supportive. They are like gold dust, and to be kept in contact with at all costs. I kid you not.
  • People who are close to you who don't understand or have faith in you, or are in denial because they aren't willing to accept there could be something seriously wrong with you. They are all too common, quite often have a very hierarchical view of the world where you know less about you being ill than the doctor, and are mental poison. You will get more stress from them than any other category except that of "lousy Boss". Some of them will change their minds, but generally you have to chip away at their attitude; give them articles to read, let them speak to a "medical authority who knows about it", and suddenly you may find they are much more sympathetic. But you really have to spell it out for them; ask them what percentage is there in it for you to suddenly muck up your life/work/hobbies/goals/relationships with an imaginary ailment, and explain just how it feels to be surfing to competition standard one day/hour, and lying in bed unable to lift a hand the next. Descibe how the physical symptoms feel; people can relate to someone who is freaked out by a sudden instantaneous loss of muscle strength in his arms, for example. ( nono It pays to be very vehement at this point - some people really need to see you get upset you before they will get upset themselves.) devil This is a great chance to let off steam...!
  • People who frankly don't care that much, it's no skin off their nose either way as long as it doesn't interfere with their job/meal/TV watching/place in the sales queue/pension plan/whatever. Very refreshing at times, and good for mental stability - you can actually sometimes forget about things spending time with them.
  • People who fall in between, or move between the above categories; many people are so wrapped up in thier own problems that they will respond to yours only on the basis of how they feel that particular moment. So you will get mixed messages, according to who they talked to last, or whether they are having a bad day, or which way the wind is blowing. They will often follow the tone you set; if you are confident enough in what you do or say, that is the basis upon which they will act. The important thing to remember here is, just because you are feeling screwed up, it doesn't mean to say you are the one going off his head ! Sometimes it is the other guy's problem. yeah

I'm pretty lucky, my way of getting around the potential lazy reputation problem has been that I do voluntary work when not fit to work for a living. In Scotland, we have a welfare benefits system that allows this. Everyone loves a volunteer...is very sympathetic to someone who is perceived as not just sitting at home when they could do...and you can gain a reputation for competence which totally wipes out any doubts in your mind, and those of others, that would otherwise linger. The boost to self-esteem, not to mention the character references for future employers, and the improvement to your general health, is absolutely invaluable.

  eyes The downside is, being able to make the effort.....


Rock
Regular Member


Date Joined Oct 2005
Total Posts : 28
   Posted 1/11/2006 2:28 AM (GMT -7)   
Hi Shaper
Are you depressed? The three big symptoms of CFS are depression, sleep disturbance and lack of energy. They can't do much about the last two (sleeping pills I'm told are only for short duration) but there are a lot of antedepressants. Sometimes takes trial and error to get the drug and the patient matched up.

My depression was also helped by therapy and the 12 step program Emotions Anonymous.

Some people on various message boards report good results with a variety of supplements and/or vitamins.

Good luck.

Shaper
Regular Member


Date Joined Jan 2006
Total Posts : 23
   Posted 1/11/2006 5:51 AM (GMT -7)   
i wouldnt say depressed, although the doc did think that i was so i had to go and see a shrink. it was oh so much fun. i have good and bad days, i just try to not let it get to me! as for taking anti-depressants thats a big no-no for me! i've had my fair share of bad luck through my life and i always seem to be able to pull myself through it, just by strength of friends around you, family, will power and keeping an open mind! i find meditation works well, half an hour a day seems to do the trick!!(dont sit there and hum!!concentrate on your heart beat and try to slow it down. you'll find yourself feeling relaxed in no time!!!!!!!)
I took a part time job in a pub to get people of my back. two nights a week i thought it'd be easy! how wrong was i!? after my first shift it wiped me out - i spent the next 1 1/2 days in bed just trying to recover!
the tip about covering your eyes when your going to sleep works well and i urge anyone else whos struggleing to sleep to try it!
One last thing before i have to go, does anyone have any idea if CFS just goes away as suddenly as it came on? or does it go away in bits? how long have we got to feel like this or is it different for everyone?
it being a great help to know that i'm not the only one suffering and i thank you tongue

house mouse
Regular Member


Date Joined Dec 2005
Total Posts : 24
   Posted 1/11/2006 2:29 PM (GMT -7)   
Hi Shaper
sorry you have this too but it seems like you are in good company. All the people I know with CFS are pretty great people.

Like you the thing that's hard to understand is the people who will make the whole situation harder by their attitude.

Just know that there are a lot of us right behind you each time you try to help them see how it really is. Some just don't want to know, but you will find out who your best friends are. Sometimes it will surprise you who comes out of the woodwork and is supportive. I guess I wouldn't have understood this if I didn't have it as let's face it, it doesn't make a lot of sense to us either. It would just be nice to be given the benefit of the doubt though as we were all pretty go getter type people.

I know of people who have suddenly got well. 2 personally. It does seem a bit different for each person. My Doctor says there are about 5 different catagories and there seem to be different triggers. A virus or chemical are a couple. Some people have been sick for years and then just started to go up and not stop. Some it has been instantaneous. The length of time varies too. A year to many years.

One lady told my husband that she had gone to someone who told her to eat plenty of bread with grains in it but her Doctor told her to take her pulse and if it went up significantly (up over 80 beats per minute at rest) after she'd eaten something then to cut it out of her diet. She found that it was happening with the grain bread. Once she dropped that out she felt a lot better.

I found for myself that when I was really sick I couldn't tolerate some foods but as I got to better phases I could introduce them again. If I over did the exercise then the depression would hit 24 -36 hours later. If I rested then that first bout would be the worst and from then each day would be a bit better.

I try to have a routine as much as I can ,then I can tell more easily if I'm more tired than usual and take it more slowly. After a while you can figure out what the pace you can handle is. Then take it slowly, eat healthy, drink plenty of water and give your body every opportunity to heal itself. The best advice I was given was to do half of what I thought I could. Then there's energy for the unexpected.

I've found the slow breathing does help when I'm not feeling good.
I have been giving myself a routine over the last few years where first thing in the morning I read the Bible and pray for a list of people and me. I guess it's like my meditation time. That way I feel that I can get my head away from the CFS and focus outside myself. It works and reminds me that miracles can happen. You never know the difference a day can make.


Keep in touch with others on the forum as then you will feel that you aren't alone.

I take medication as got to a point where it was a bit to big for me to handle, and the meds have helped. I cut the dose back myself when I could.
If you take vitamin B try to take it in the morning as it can keep you awake if you take it after midday. I found if I could go to sleep at night thinking of anything good that had happened that day and get my head as together as possible it really helped me the next day. Often I think there are people like me but they don't even have a bed to lie in or a meal to look forward to. Sounds a bit corny but it helps. When you are stuck in one room for along time you have to be thankful for the little things as there aren't too many big ones!

I was a RN but now I've gone back to my painting and sell freelance designs for Greeting Cards.
If you can find something that you enjoy to do and do it at your own pace from home when you are up to it, it takes the stress out.

Find things that keep you looking a head but don't put dates on things you want to accomplish as it can be hard if you don't make it.

Hang in there.
The Doctor told me I would have this disease for 3 years. At that time I couldn't see how I would get through the next 5 minutes. What he didn't say was that I wouldn't always feel that bad for the whole time. There would be good days and not so good days and hopefully as you rest and balance things, the dips will get shallower and less severe and the time between them longer.

I really pray that one day you will start to go up and never go back and it won't be too far away.
Take care. :-)

Shaper
Regular Member


Date Joined Jan 2006
Total Posts : 23
   Posted 1/15/2006 9:04 AM (GMT -7)   
more questions seem to appear out of thin air, when you have alot of time on your hands! Anyway doea anyone else find that even the sligthest exercise leaves yuo feeling tired? my symptoms start with a migraine, which puts me on my back and i just end up sleeping!! 2nd is alcohol! as the festive season has just past and i didnt want to be the humbug. i joined in with the celebrations having a half that was it for the night. in the morning though it felt like i had done 12 round with holyfield, tyson and ali!my body just refused to move!! most of you will bw thinking that i'm a light weight and it was a hangover - but i can gurantee that it wasnt! has anyone else suffered symptoms like these??
it's chinese new year in 2 weeks and there celebrations last for a week is anyone gonna celebrate with them?
Aloha

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/16/2006 7:08 AM (GMT -7)   
I have noticed that exercise almost always makes me more tired and sometimes I feel worse after exercising than I did before. I also don't react well to alcohol anymore (part of that is the meds I'm on). I have a work party coming up soon. First of all I'm not even sure I'll have the energy to go. Second, it's not a lot of fun to sit around and watch others drink.
Dx:  Suspected Lupus 2004, CFS 1991
Meds:  Plaquenil 400mg, Tramadol 100 mg 3x day, Amitriptyline 10mg, Neurontin 300mg


FallenAngel311
Regular Member


Date Joined Nov 2005
Total Posts : 90
   Posted 1/27/2006 4:20 PM (GMT -7)   
There's a medication out there that's been mainly used with people that have narcolepsy, sleep apnea, and other sleep type disorders that cause excessive or chronic fatigue... Provigil. I was on it for about a month years ago and it worked wonders!! I'd call it a miracle drug.

I had no side effects whatsoever,... I felt like how I would imagine normal people feel after a good night of sleep. You wake up, take one, and feel like you have the energy to get through the day. If you just want to sit and relax, you can do so without feeling like you're going to go nuts if you don't do something. You just feel energized. It is sometimes used to treat chronic fatigue also according to the people at Provigil.

Only drawback, if you don't have good medical coverage (perscriptions)... it runs approx $300+ a month. I have a scrip sitting right here that I can't fill because I don't have the $204 I need to get it filled :(
Hugs,

Nikki

I do not know what's wrong with me yet, but hopefully I'll find out soon :D


Shaper
Regular Member


Date Joined Jan 2006
Total Posts : 23
   Posted 2/3/2006 1:00 PM (GMT -7)   
thats good news about the drug, i'll see if i can get the doc to put me on em!!i think i could do with em now as i feel exhausted!its being the first time in weeks that i struggled to get out of bed...it was sooooooooooooooooo annoying but life goes on! what do you do when you feel like this? is there anything you can do, like a magic voodoo remedy?ooh ooh has anyone tried any alternate therapies out there and do they help?
keep gliding
Aloha

house mouse
Regular Member


Date Joined Dec 2005
Total Posts : 24
   Posted 2/3/2006 1:24 PM (GMT -7)   
Hi Shaper,
there is one that I know has helped some people and that is Amino Acids. I take them before
breakfast and I could feel an immediate improvement in the level of my energy. They aren't a cure but can help. If you are ok on dairy products yoghurt or probiotics can help as they put the good bugs back that antibiotics kill off. They help us to absorb protein which we need for the energy. Seems a good rule of thumb is too find out as much as you can about the product before you try it (people all have different things they want to get you to take, but the expense can add up and the effect isn't the same for everyone) and just start off with about 1/8th or 1/4 recommended dose as with this illness there can be sensitivities to medications. I'm not an authority so these are just suggestions.
All the best

Shaper
Regular Member


Date Joined Jan 2006
Total Posts : 23
   Posted 2/4/2006 4:05 AM (GMT -7)   
amino acids aren't they a posh name for vitamin C?? well what ever they are i'll give them a whirl - anythings better than the way i feel at the moment! No matter how mant times i'm told to take it easy, i never do and end up back at square 1!!
does anyone else out there get really grumpy when their feeling down?i know i do and it drives everyone around me bonkers. I can be fine in the morning and then swing to moody in a matter of minutes, anyone else do the same?
takk for all the help. ALOHA

Photosoph
New Member


Date Joined Feb 2006
Total Posts : 5
   Posted 2/4/2006 2:42 PM (GMT -7)   
Yes that mood thing is pretty much parr for the course. Because my daughter and I both have it, it's easier to compare notes.

Have found the downs and moods seem to correspond directly to how much we've over done it.

If you are in the active stage of CFS (Where it's all up and down) take it a bit easy until you stabilise a bit. I know sometimes you just have to do something or you go crazy but do your best.

In the bad spots remind yourself that it will only last a certain length of time. As you rest each day you should be able to see some improvement even if it's only a little.
Amino Acids are different from Vit C. There's a query over whether Vit C is good or not so good if you have CFS.

Amino Acids are like protein building blocks. There seems a thought in some camps that our bodies for some reason (viral infection or something like sprays etc) have done some damage and the digestive tract is affected.

Amino Acids are easily digested and get some energy into you. They do something good for the liver too. But just try a little at first. Usually taken 1/2 hour before a meal, but read directions on the label.

Really hope that you can find something that helps.

My daughter takes Salmon oil capsules 3x a day. No quick cures I can pass on but some people find the oil really good. Full of omega 3 and 6 I think which is supposed to be good for you.

If you have the energy, do a search on the net on the things suggested to you and see if you think they appeal to you before you try them.

Vitamin B Complex is a good basic one to start with too. it can helpthe moods a bit .One thing to remember is to try one thing and see how it goes. If you take a handful of different ones and you feel great or not so great, you wont know which is the one having the effect.

Don't get discouraged. I know people who have got well and that's always an encouragement.

Let us know how you get on.

Shaper
Regular Member


Date Joined Jan 2006
Total Posts : 23
   Posted 2/4/2006 3:16 PM (GMT -7)   
well i'll try em and i'm sorry to hear about you and your daugther and i hope you get through it! i've found that having someone there that understands you helps. i tried an indian head massage and that helped relax me and i didnt suffer a migraine for at least 3 days, so if you can find someone who can give you a massage - then give it a whirl.

it's also true about the mood swings and how much you've pushed yourself. i always oveer do it when i'm feeling better and i end up spending 2 days in bed - my advice is the same as everyone elses, take it easy! as i was told yesterday small steps work better than giant leaps!!

one last thing, just something that makes me laugh and that is whats the funniest/strangest thing someones said to you when your having a bad day? Mine has to be from an old lady i know, who told me " that i look like i've been on heroin for a week"!! All cos i was pale and distant!! what some people say when they dont understand!! have you had any thing funnier/stranger?let me know.

Aloha

Photosoph
New Member


Date Joined Feb 2006
Total Posts : 5
   Posted 2/7/2006 2:19 PM (GMT -7)   
Yes! It sure is amazing what people can say. For years it has been "Maybe you just have to push yourself (after I had been up until 11.30pm trying to get Christmas organised for extended family and was really tired the next day-remember I spend my days in bed!)

On one visit it was suggested "You could at least put a little make up on," I'm not sure if that was to make them or me feel better.

"You just need to get fit", when I could hardly breathe.

I can only eat about 12 things because of sensitivities and they suggested for my birthday I have a cake with everything on it including bright pink icing! As if somehowthat would cure this problem that is just in my mind. Laughable but also a complete lack of any idea what it is like to live with this thing every day.

I think that's why we all like this forum. Where else can you say it how it is and not get looked at sideways.

I have a small problem with a relative who tells everone I've just taken to my bed. Only words but what they've done is quite serious as it has jaundiced the opions of others around me. I can tell who this person has been talking too as suddenly the relationship changes. But the good thing is the ones who are left are worth their weight in gold.

The being distant thing is awful - brain fog.

On the other hand being told how well you look when you feel like really bad is a little amazing too. To be fair we can look good when we feel bad, so I guess this illness is just so hard for everyone to understand it's so illogical.

Here's a joke. (They say laughter is good for the immune system)

"If at first you don't succeed................................................. Skydivings not for you!

Take care

Photosoph
New Member


Date Joined Feb 2006
Total Posts : 5
   Posted 2/7/2006 2:28 PM (GMT -7)   
Hi, my daughter joined the forum as photosoph and I just realise that I have come up under photosoph for the last couple of posts. Sorry! Will sort this out asap
House mouse
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