CFS recovery and relapse

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ekate26
New Member


Date Joined Jul 2015
Total Posts : 2
   Posted 7/6/2015 8:23 AM (GMT -6)   
Hi all, this is my first time posting on a forum but I am hoping to hear if anyone has any knowledge or similar experience as me as I'm starting to feel very alone! My story is quite a long one, my apologies!

I was first diagnosed with CFS at age 16 in 2009, It took about a year or 2 for the diagnosis, I do not know what caused it, I had lots of sinus problems always from a young age and was very active overacheiver type and when I first started feeling ill with severe migranes I kept pushing through whilst getting tests done, gradually more symptoms appeared, severe fatigue, dizziness, swollen glands, muscle aches, feeling like i physically couldn't move my body, brain fog etc until eventually the tests didn't reveal much and I was diagnosed with cfs by a specialist. This lead to me cutting down to attending school part time, quitting all my sports and my part time job as well as basically having no social life. After about 9 months I was lucky enough to get into a one month hospital rehab program for cfs, which helped me improve a bit but not enough and once i was out i found it difficult to continue the improvement, eventually i got on to a p.t who had previously had cfs and started up his own clinic and i did a 12 week program with him which help me tremendously! by 2013 i was starting uni full time however i was unable to work as well for the first semester and struggled to have a social life, by the second half of the year i started a part time job and managed that as well as uni, i gradually incorporated some graded exercising and by the end of the year i had a thriving social and work life as well as finally learning to run again, i basically considered myself "recovered" from the cfs although i had to be very careful with the running if i did too much my glands would swell and i would feel a setback. I was also taking supplements and had been seeing natural medicine practioners.
On the 1st of January 2014 I was involved in a serious car accident in which my pelvis was shattered and i was hospitalised in rehab for nearly 2 months, unable to weight bear for 3 months and took me 6 months to learn to walk again. Even once i could walk unaided i suffered and continue to suffer lots of pain in my hip and back. I was on many painkillers, now only one or two 50 mg tramadol a day, but it had been 18 months since the accident and I'm still not right. I have been doing some sort of rehab ever since as well as seeing alternative therapists, things did look like they were improving in december and i tried getting back to work 3 hours a fortnight and well as trying to learn to run again but it was too much and all of 2015 i have kept getting sick, feeling extreme fatigue like i did with cfs and the brain fog, aches in my joints (where i wasn't injured) and had numerous tests all seems to be fine including injury wise, my gp has referred me to a cfs specialist again. I should also mention i had a close friend injured in the accident with a serious brain injury and after watching her suffer for 10 months she passed away, so there had been an extreme amount of trauma, anxiety, depression and ptsd from it all. I actually seemed to go downhill around the time of the accident anniversary, and her would be 21st birthday as well as a stressful court case as the accident was caused by the negligence of another driver. It has been very difficult to dissect which symptoms are caused by what because of all the other factors involved.

Basically has anyone ever thought they "recovered" and then got cfs again? Or is it something you always have it just is milder at times and more severe other times depending on circumstances?
I've also read physical and emotional trauma can cause cfs, whilst i believe i originally got it from a post viral infection of some sort could it be possible all the physical and emotional trauma since has flared up the symptoms again and caused a relapse?

Thank you to whoever reads all of this!!

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7087
   Posted 7/7/2015 8:40 AM (GMT -6)   
Welcome to the forum.

You certain have had your share of sickness and trauma.

While what are experiencing may be the CFS again, it may also be Major depressive disorder and PTSD. The symptoms are so close sometimes it is hard to tell.

My suggestion is to find a good therapist [if you don't like the first, excuse them and find another] and process the loss of your friend, the loss of your physical freedom, the trauma of the accident.

There are many feelings that go along with what you are dealing with, anger, frustration, rage etc.... none of this is your fault. You have a right to feel the feelings. A therapist can help you feel better and possibly the symptoms will disapate.

Peace and strength
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

ekate26
New Member


Date Joined Jul 2015
Total Posts : 2
   Posted 7/7/2015 10:06 PM (GMT -6)   
Thank you for your reply !
I have received weekly counselling from a psychologist about 19 months now and found the people I'm working with very helpful! When I was referred to someone who i didn't believe I was benefiting from I changed to a different one after 4 weeks so I know the importance of finding the right therapist t really does make a huge difference. Whist I did have some PTSD last year I don't anymore although there is still a lot of grief, anxiety etc I believe its independent to a lot of my symptoms I've started experiencing this year. It's more the legs that feel like jelly and start to collapse under me, and the feeling of my limbs being to heavy to move and my heart rate increasing dramatically to do simple tasks such as getting changed and showering as well as my glands swelling thats indicating that it may be CFS again. But again it definitely is difficult as lots of the symptoms can be interrelated with other things which is why the doctors have found it a bit confusing to direct what actually is happening in my body. Thanks so much again for the reply :)

jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 7/8/2015 9:19 PM (GMT -6)   
ekate26, I am so sorry for all you have been through.

After reading your story, I really don't think you ever recovered. Just the fact that when you over due it you get the symptoms. That is classic Post Exertion Malaise. The best thing you can do for recovery is to stop pushing yourself both physically and emotionally. When you stop exercising, you will notice your symptoms easing up.

I also was able to put my cfs in a kind of remission for about 2 years with some supplements. For reasons at the time I had to quit taking them and my symptoms came back and I have been struggling every since. But, with diet, keeping my physical and emotional exertion to a minimal, and supplements, i am working again.

Give yourself time.
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