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Chronic Fatigue Syndrome
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Posted 6/18/2013 7:31 AM (GMT -8)
Hi
I have been diagnosed with fibromyalgia, but am now starting to think I have CFS or even both!

Been ill since December, with what started off like overnight a pain in my back...this pain spread to my neck and then to my arms and legs, but at same time fatigue was awful...

Also have had on and off over the past 6 months, pattern dizziness, lightheadedness, twitches, cramping, nerve pain, hot and cold flushes, sore throat, acid reflux

I know a lot of these symptoms are fibro also

I have been gradually grading back to work (i work 4 days a week in office) and i also have 2 small children.

I feel fibro can be managed, but CFS is really scaring me and I don't know how to manage that, if i do have it...my doctor is clueless

Question is - will I be able to get back to work and be able to manage symptoms, through pacing and meds? I guess only I can answer that!
Has anyone else managed to get back to work with CFS?

Thanks
Posted 6/18/2013 11:15 AM (GMT -8)
Have you had a complete blood count done?  Given your symptoms, it would be good to get the usual suspects checked.....endocrine system, adrenals, thyroid.  Start to narrow the funnel so to speak.  Fibro and CFS have long been connected, but you need a doctor who at least knows about CFS.  Otherwise you will be fighting a battle of convincing the doctor of symptoms that are hard to distinguish.  I mean, how do you describe fatigue to someone who isn't in our shoes?  I have had more tests than I can count, and nothing really stands out exept for some immune markers that are off.  Have you tried any supplements yet?  Some can provide symptom relief,  Vit B, DHEA, Magnesium malate, and pregnenolone have helped me to some degree.
Posted 6/19/2013 8:11 AM (GMT -8)
Thanks Minnesota

Yes had all blood works checked twice, including vit d...not had adrenals checked...how do you check for that?

I am in UK - hard to find a doc to listen to me, unless I go to a specialist private clinic, which I may have to do in the end.
I am about to see a homeopath...maybe will have more luck with this? Seeing a neuro in august...mainly about the twitching and dizziness

On vit b complex, eve primrose oil, Mag malate, vit D, fish oils...D - Ribose and Co enzyme 10 for energy...only just started with last 2 so will see how i go

Also on amitriptyline to help with slee...but it doesnt help, have terrible insomnia, which makes fatigue worse! She has now put me back on remeron to see if this helps (was on it before)
Was also thinking of trying melatonin if this doesnt work.

I feel like I am doing everything right. Have cut out caffeine, eat protein with every meal, healthy diet, walk when I can, pace myself and yet its just unbearable sometimes...I suppose I should just keep doing what I am doing

I didnt have a virus before this started and I have been checked for Glandular fever/ negative
Posted 6/19/2013 5:52 PM (GMT -8)
Wackers34, I was not able to ever go back to work but I do know that some can. As you said, only you can answer that. I wanted so bad to go to work & I tried & tried but I was just so sick & fatigued I couldn't do it. So I had to quit. I had just been offered a position I had been working towards for a while, so sad.

First, as Minnisota said you must find out for sure what you have. FM can, alot of times, have something else going on along with it but sometimes it stands alone so it is hard to say. Like you I just knew there was something else, I was having so much trouble with sleep & fatigue. Sounds like you have had quite abit done diagnostically already so I would suggest getting to a Dr who knows about CFS. My Dr didn't know anything about CFS so I was refered to a Rhuematologist for dx.

Hope you finally find out what is going on. Let us know how you are doing, hugs, Denise
Posted 6/20/2013 3:05 AM (GMT -8)
Thanks Denise

I think this will be my plan..see the neuro in August, have a 3 hour appoint, just to rule out anything nastier going on...if he thinks its fibro only I will ask for a referral to Rheumy, if he thinks its CFS, I will go to a specialist clinic...there is 1 about an hour away from me. Its private so will have to pay, but will borrow money off parents.

In meantime, will continue with what I am doing...doc has put me back on remeron to help with sleep, I will keep taking all my supplements etc and im doing CBT and GET...I have some days where I feel quite fine, on those days I was able to walk round a theme park from 9:30 -6:30 - boy did I ache and I pushed through the fatigue...next day I even went to work

Before this started I didnt have any visible virus...it literally hit me overnight with a pain in my back.

Its encouraging to me that you have said some go back to work - there is hope and everyone is so different. I should stop worrying about the future and take each day as it comes. I have only had it just over 6 months, so its still early to try  and help myself..how long have you had it and how did you get it?

Thanks for all your support

Posted 6/21/2013 11:03 PM (GMT -8)
Wackers, I too have days that I can do more then usual but for me they are not very often. I love those days, I feel almost well but then the fatigue & sickness come back. I live for days like that. :-)

With any kind of chronic illness you will go through a period of mourning for your old life as you learn to live within the bounds of your illness. We live one day at a time & that is really hard to adjust to after leading a more fast paced life. But you can do it.

I was dx'd in 2006 with both FM & then CFS. I didn't have a virus or anything, it just came on one day & that was it. Everything in my life changed. I try to enjoy my life right now having my daughter & 2 garandchildren living with me. We are all used to each others illnesses & get along great. I would not have this time with them if I was still working. So, I can't say I am sad that I am not working. I have mourned that part of my life & moved on.

Feel free to ask any questions you want & I will see if I can answer them. I think your plan is a good one. Hugs, Denise
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