CFS or something else?! PLEASE HELP!!

Brain and nerves
1

I am just looking for the most amount of personal stories and information as possible.

The last year of my life has been a brutal one. At the age of 22, I am in the lowest of lows and I desperately need some help!

Here’s my tale:

About a year ago, a couple months after an extremely strenuous relationship, I began noticing that I was tired all the time…and all around, I wasn’t really satisfied. Don’t get me wrong, I still enjoyed my friends, and activities…but life just wasn’t as bright and vibrant anymore after a month of noticing this ever-present fatigue, it got a bit stronger. I would wake up each morning completely zombie-mode…and that feeling would remain throughout the entirety of my day, until my head hit my pillow that evening.

Initially, I suspected some form of sleeping disorder. I set up a sleep study, got my thyroid checked, ferritin levels, all the basics. Sleep study revealed I sleep just fine and all my other blood tests came back negative.

The fatigue and the weight of the world slowly got worse over the next handful of months, UNTIL I woke up one morning and everything escalated greatly. I felt completely stoned or drunk. I couldn’t think right. I couldn’t concentrate. I felt inebriated. I felt totally disconnected and spacey. I felt as though I had no control over myself. I lost drive and motivation. I lost a lot of confidence.  I always had an incredibly sharp memory. It was actually something well known about me to those in my family and friend circles. Yet, on this morning, almost all new information could not be retained. Things that happened earlier in the day, by evening, I felt they happened a day or two before. I could no longer recount the activities I took part in. This is possibly the worst of all the symptoms. The extreme short term memory.I used to recall mon-sun quite clearly. Now, things that happened just 2 days ago seem to have happend ages ago and almost are lost. I have an impossible trying to recount my full week.  I have no context for time and I sort of feel like I’m just floating through life suffering.

For months I visited doctors getting tested by specialists. I visited a neurologist, infectious disease, I had an MRI, & I had about 20 different blood tests. NOTHING. My doctor literally said “I have no idea what this could be. I am beside myself” TOTES reassuring! I tried altering my diet entirely to organic and all natural. I continued my workouts and ran 15 miles a week. I tried sleeping even earlier. I tried all I could think of .

I have scoured the message boards and found a few people suffering from the same, but without answers.

I’m not sure if depression is the culprit, but depression sure has found its nasty venom-coated fangs into my veins. Tired, depressed, failed memory, no drive, scared…it’s no way to live. I want my life back.

PLEASE OFFER INSIGHT! I will be so grateful 

Sincerely,

Taylorsaurus Rex

2

Greetings

Sorry to hear of your troubles. Did you at any time have a viral infection before this all started. Even a cold or a bout of nasty flu. The virus can leave the body or become dormant but as a result can produce lingering symptons such as fatigue, weakness in muscles etc. It can also manifest into depression ...

Elle

3

you will get some more knowledgable replies, but as soon as you mentioned

your 15mile workouts, lifestyle is possibly the cause of your CFS/ME

this in so many posts here  many mention

pushing themselves  hard, add stress factors etc,

your resistance is low and you are vunerable to this virus,

which the main recovery plan is a  change of lifestyle to rest, rest, rest,

plan everything so you do the minimum amount of

physical work, then if you notice the slightest recovery,

this becomes a starting point,

 

4

Thanks for replying!

does it sound like CFS or something else?

I was tired all the time and feeling fatigued and a bit zonked... but just before all the memory loss and feeling of being super detached and not alive, I had a chest cold!

5

Thanks Mike!

My works outs didn't really affect my condition... When all this started I was NOT working out...and I haven't been for a couple months....

I have completed 3 boston marathons and also the worlds toughest Ironman Competition.

If anything. A good workout gives me a bit of emotional boost...but doesn't affect the physical symptoms much.

Taylor

6

Mike i agree with you... was about to write the same - but... otherwise known as a virus amongst elite athletes.... but the virus is never named or found quashed a couple of greta careers...Taylor, often the elimination of anything else is the diagnosis for ME... seems they have done that talk to your doc about refferal to CFS / ME consultants... 

7

Thanks guys I'll look into it.

I have no headaches, no swollen lymph nodes, no muscle or joint pains...

all my issues seem to be right there in my brain

8

Hi there , it's so sad reading how low you are feeling & when I read , I want my life back !!! I could have cried , that's exactly how I used to feel ( & still do now & then !!) I've come to terms with all the things I have to live with having fibro & cfs !! But it's taken 14 yrs to get to this point !! When you've exausted all the drs & finally get a diagnoses then you will have to learn to live differently !! You need to except its not your fault it's nothing you've done !!! It's a pain in the backside but one you can learn to live with !! Please don't blame yourself , keep on to the drs then you will be able to move on !!!! Good luck & try not to worry , take care dawn xxx

9

Do you have brain fog, like your hungover, and as though your brain's made of cotton wool, an awful heavy feeling?

10

It might not have become apparent at the time that you were pushing yourself too hard. I pushed myself relentlessly with studying, and I didn't feel like it was doing me any harm at the time, in fact I enjoyed it but in the end I got ME.

I think there were other factors too, such as a bad virus and high stress, steroids, unclean water pipes, I could go on!

11

Just to add many people recover!

12

Tylor I appreciate your entire story and I am beginning to believe that every detail of account matters and may hold a key to the condition we all here share. I was actually motivated to join and comment having read your story. One thing in particular caught my attention as it seems to be parallel to my onset of this mysterious disease. It was your "a couple months after an extremely strenuous relationship". My onset strangely coincided with a period of emotional roller coaster of both positive and negative emotions spanning from relationship and work. I wonder if the same was true for others. I am mostly preoccupied with my physical symptoms however not without concern for my emotional state. Still, maybe I am missing something crucial here. I hate to say it but it was as if that relationship/person/emotions/work just sucked my life essence out of me and I just can not get it back!

if anybody else is making this distinct connection I would love to hear about it.  Regretfuly i do not have any useful pointers or answers.....

I wish you best of luck and speedy recovery. 

13

Taylor upper respitory virus is a possible cause of autoimmune or chroniclymphocytic thyroiditis worth looking up . The waking one morning and suddenly !!!! Sounds very like my experience . All the symptoms and more hit me  out of the blue . Just because your thyroid blood tests always come back normal does not mean you have not got a thyroid condition or disease . Read up on this then talk to your doctor with the info  IF you think. It sounds like you. Good luck young man !!

14

I can also relate to being extremely stressed before becoming ill , my dear mum was diagnosed with cancer just a year after my dad died suddenly , I hadn't really delt with his death when I found  myself nursing mum , running a BUSSINESS & having two young children !!! I was running in circles !!!! By the time mum died I was in so much pain & so very tired , I truly don't think I've had NORMAL ENERGY since !!!!

that was 14 years ago & now in registered disabled & struggle every day 

so there may be truth in this being a stress overload our bodies can't deal with !?!?

take care out there x

 

15

Hi Taylor,

I am so sorry to hear of your problems.  It is so awful that such a vibrant young person should be suffering so.  I believe that you have suffered severe trauma in your relationship which has taken its toll on you physically, emotionally and psychologically.  I am not a believer in this 'all in your head' thing that doctors often try to foist upon us but I do believe that you are depressed.  This depression, like mine, could be because of the physical illness you have and the symptoms you describe could easily be CFS/ME.  It is true what Andrew says that this is often the diagnosis after elimination of many other known illnesses.  You must continue to monitor how you feel and stop pushing yourself so much physically because this exacerbates CFS/ME and you could find yourself even more unwell.

First, however, I think you must address the depression you are feeling.  It sounds as though you are spiralling into a deeper and deeper depression as time goes on and this will only serve to make you feel even worse.  It is a devastatingly debilitating illness which robs you of your way of life and it takes courage and strength to manage it.  Most people who suffer go through a grieving process for the life they had and the person they were similar to a bereavement.  So if you are suffering from depression you will find yourself unable to cope with what is thrown at you.  Please, please see a doctor to help cope with the depression and maybe then you will be in a better state to cope with the awful symptoms of CFS/ME.  I speak from experience having had this for 7 1/2 years.  I fought the doctors who told me it was depression because I knew that I was physically ill, and not as a manifestation of a psychological problem.  I fought until I saw a psychiatrist who told me I was severely depressed because I was so ill.  With CBT and antidepressants I managed to get this under control and am now coping better than I have for a long time.

I am unlucky in that I am still ill after all this time.  I am, however, hopeful of a full recovery and hope also that I will be able to go back to work and regain some sort of active life.  Not everyone stays ill like me.  You have every chance of regaining your full health, as others have done, so it is not hopeless.  Research your symptoms and try what you can to make yourself feel better.  Keep coming back here for the advice and information that others on this site can offer you and please, please, try to see someone about your depression before it takes a complete hold of you.  Sorry this is a rambling message and a bit disjointed.  I am tired and it is late.  However, everything I say is meant as an encouragement to you to take charge of your illness and help yourself to get better, with the assistance of doctors and your own strength of character which is obvious in your message.  Good luck.

16

Great points about the grieving process Shreddie, very well expounded.

I just want to add that not all of us resort to antidepressants, it's not the only route. I use St John's Wort and sometimes a light therapy box and they work wonders! 

17

From the day this illness took hold of me my brain went to mush I was an avid reader up to this point and knitting was a pleasure . I could not read a book because when I picked it up after a break I couldn't remember what I had already read and had to back track to get the gist of the story eventually it was nt a pleasure any more so I stopped reading books and only read magazines and smaller articles . As for knitting I started in 1957 when  I had my son and continued over the years . I knitted for my children my friends my grandchildren . When I became ill I could not follow a pattern I had to pull it out and try again Aran patterns I had done time and again I knew almost by heart I could not remember so I gave up even trying . The foggy brain the lack of concentration the spaced out feeling the fatigue etc etc life was a nightmare !!!! I eventually was given a trial of thyroxine a long story but within a few weeks I became at least 50/60% better I am not 100 % well but grateful for the improvement . Thyroxine is the treatment for autoimmune thyroiditis so obviously although my blood tests were always normal, this was my illness! And 19 years later I have been given a definite diagnosis. . Thyroid disease is one of the most misdiagnosed diseases don't be like me fight for your health doctors make mistakes !!! This may not be you Taylor but I felt I had to put my experience forward . I don't want to anger or upset any one diagnosed with ME/CFS I know it is a very dibillitating illness I just felt I had to bring this to your notice . Best wishes . 

18

Hi Taylor

Sounds a lot like cfs. Have you not been to speak to your gp about the possibility of it being cfs?

My cfs started after resignation of a job I had for 23 years had stress anxiety then glandular fever. Fibromyalgia. And cfs. Its horrible that feeling of not belonging, sleep issues. Fuzzy memory I get it all. It makes me very low and I crave for the person I once was to return. My relationship is dead. But despite it all I try to remain positive.

June

19

I don't have any muscle or joint pains though. I don't have headaches or sore throats or swollen lymph nodes.

I also am able to lift weights and run and not have it increase my symptoms of exhaustion...

so I am not sure!

20

I don't have any muscle or joint pains though. I don't have headaches or sore throats or swollen lymph nodes.

I also am able to lift weights and run and not have it increase my symptoms of exhaustion...

so I am not sure!