Is this what CFS feels like?

Brain and nerves
1

Hi all, brand new to the forum and looking for some insight. I tend to be a bit wordy, so please bear with me smile

I'm a 28-year-old woman whose doctors are quickly gravitating toward the diagnosis of CFS or a related/similar disease.

Background: I have had very little physical endurance for as long as I can remember. All through every level of school and university, I could never keep up with anyone else. Exercising several times a week improved my muscle tone, but never this worsening exhaustion. In my mid to later teens, I gradually had to stop doing everything I loved, and one by one, all of my hobbies all fell by the wayside because I just didn't have the energy and couldn't keep up. Almost every day after classes, I would physically need to sleep for a few hours.

My diet is very refined and has been for more than 10 years. Most people don't understand how I've been able to live with cutting out so much. Yet my weight continues to be persistent (diagnosed with PCOS) despite my every healthy effort. I see several different doctors, and had blood work done about 6 weeks ago, all the levels of which came back within normal parameters.

Back to the fatigue, I can currently sleep as long as 10-12 hours at a time, and often feel the need to nap during the day. Going out to run errands tends to exhauss me. My body feels often like it's made of lead. I get lightheaded more often than I'd like and lose my focus easily, and I just don't feel like myself. I have had periods of months in the past several years where I am just ill... but with nothing diagnosable. Practically needing bed rest for weeks at a time without explanation.

I had a strange few weeks of migrating joint pain about 2 months ago, debilitating pain that bounced from a knee, to a wrist, to an elbow without explanation. I will sometimes (infrequently, but dependent on my activity level) get a pain in a finger joint, for example, that is so severe I have to immobilize it with a splint for a few hours or a day. But overall pain is really not that common.

I could swear I catch every bug and illness that goes around.

The possibility of this diagnosis is becoming more and more likely, and to be honest, I'm just scared. I don't know how I'm going to embrace the future and put my degree to use among other things with this hanging over my head. Denial has gotten me this far but reality is much more frightening.

Any insight is always appreciated. Thank you for taking the time to read.

Fly

2

Hi,

I would say those are CFS symptoms. CFS effects everyone differently in how we cope and how it alters our life. I a 14 months in, i was previously very fit and active and never sick. Now i had to leave my job and cancel my gym membership and pretty much don't have a social life. I'm donig graded exercise therapy in the hope in the long run i can improve to the extent where i have more enery and just feel normal. The worst part for me with CFS is you know you are ill all the time, there is no respite from it. I feel the name chronic FATIGUE syndrome is not suitable really as people assume fatigue is no big deal, i've ran marathons and done lots of tough sports where i was tired afterward, this is nothing like that. I call it chronic illness syndrome. It sucks, the good news is people can get better from it so we have to assume that this is going to be us.

3

Have a search online for the CFS/ME diagnostic criteria and check your symptoms against that.

CFS does effect people in different ways but often, there are common symptoms relating to digestion, neurological, insomnia etc.

Also, make sure everything has been checked as far as you can go. CFS is an umbrella the NHS (in the UK anyway) put you under when their testing finds nothing.

4

Try not to worry !! I know its scary but there is life with cfs even though you may not see that yet you will get to manage your illness & your life & have a happy life !!!

you must get as much info from as many people / drs & try all they offer to find your way through this fog !!!!!! Ive been ill for 14 yrs  I have fibromyalgia & cfs & some daysi can't go out & other days I'm out & I've even been on holidays ! 

Try to find time to spoil yourself you need to relax it's not your fault !!!! You will have better times & as David has said you may be lucky & get better on day soon good luck & take care dawn x

5

I wish you all the best, everybody is different and has a different outcome. It is horrible suffering from this desease and nobody who hasn't got it has any idea how we suffer. I have had it quite a long time, it has got worse since i had a fall at the end of December. I am having to spend a lot of time in bed and am unable to do anything I enjoy and that takes my mind of the horrible illness. Good luck and if you can find a good Docter who understands that will help you a lot.

6

Well said David! So relate to all you have said.It really does suck!frown

7

Yes there are good and bad days. Last year I managed to drive myself 200 miles to Devon for my daughter's wedding. On the actual day, I was so energised and for days after too. Then on day 5 I completely crashed, but I had really pushed myself and it was the most wonderful day! lol

8

I agree, it feels much more like chronic illness than chronic fatigue, really. There is nothing I'd love more than to be able to get back into my own sport but I'm having a lot of trouble finding the light at the end of that tunnel right now.

9

I went ahead and did what you suggested, and I was surprised to know that all of my digestive symptoms might be related. I've had some trouble pinning down exactly what criteria fits CFS, but searching for diagnostic criteria did shed some light on it, so thank you for that suggestion.

I have seen so many doctors and had so many tests done.. I have a great primary but he's about to throw his hands up in the air I think. It's been years of looking for diagnoses.

10

Thank you for your kind words, Dawn. smile It's very true, some days I do feel better than others but the career I had my heart set on is very physically demanding, and seeming more like a pipe dream with every passing day. I have a consultation pending to be referred to someone who specializes in CFS, I'm just trying to get my head around what that really means right now, you know? I'm glad I found this forum, you all are so nice!

11

All-day events are really draining for me, and nothing describes it better than a "crash" lol. I do have some important events coming up in the next several months, so I'm really hoping I can build myself up for those and really enjoy them.

12

That's one thing I've found to be so difficult, is that my friends and family just can't seem to understand it. They try to, and they try to be supportive and empathetic, but it's one of those things you can't really understand without experiencing it.

And then of course all the nay-sayers and critics who accuse you of being lazy... as if that's helpful! :P

13

You will find a lot of any symptoms you have had going on will be related. I did.

The trouble with CFS is that there is a chance that you may have something else that could be treatable. The question is, as my Dr said to me, do you want to spend a lot of money, time and energy having a lot of tests done on the chance that something may be found and if it is, it still might not be treatable. Many of us decide to accept it, manage it and live with it.

If you get a diagnosis or feel yourself that CFS fits, I would immediately change your lifestyle. Good rest, good diet, good relaxation. In the long run, this will give you a better chance. Maybe look into supplements or herbal remedies to help.

14

Don't be scared! I was more frightened before I got the diagnosis because I didn't know what was happening to me.

You're a researcher being a student so you can find ways to find improvements with support and advice from the lovely people here! Be cool, many people improve all the symptems and there are those who get better!

There's a book about 50 people who got better's stories and saying how they did it

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15

My friends and family didn't understand at first and a few of them didn't even believe me but they do now and they're a lot more supportive.

Every silver lining has a cloud, and every cloud has a silver lining.

16

hi Fly. my sympathies & best wishes for the best treatment available are with you.

as someone has already pointed out CFS can be a 'blanket diagnosis', especially, if the primary symptom is FATIGUE. however, a differential diagnosis is important. for example Lupus (SLE) share many of the CFS/ME symptoms. one of the key features is the 'flitting from joint to joint' pain. there's a number of differential anti-body tests available that can help rule out/in SLE. have a google of the symptoms.

other conditions that can mimic ME/CFS is Lyme disease. there's tests for that one too. exclusion tests should include vitamins b12 & vit. D deficiency as well as Coeliac disease. they sometimes accompany or/and exacerbate ME/CFS symptoms. they may even be the cause of ur symptoms.

the consequencies of deficient or low levels of b12/D can be terribly debilitating. if CFS/ME is present they increase the symptom load. conversely having them treated lighten the stress on the body. both often creep up if someones' been ill for some time, especially if digestive problems are strongly featured. the other accompanying problem can be thyroid problems, including abnormals levels of T3 & T4. the latter are not always automatically tested by GP's, especially b12. they may need to be nudged on to yest them.

hope that's helpful and that u get so

some relief asap.

Caitlin.

if ur in the UK, there are a number of speciliast ME/CFS clinics which u can be asked to be referred to. they provide management courses & on the phone advice. most, if not all have specialist GP Docs attached if u wanted to see one by appoinment.