Advice? Apologises for the long post!

Brain and nerves
1

Hi, I am currently in the referral process for Chronic Fatigue Sydrome. This Thursday (26/01/17), I shall be completing a questionnaire with my GP so the hospital and specialists in this area can see me. 

This all started in January 2016, I suddenly became very ill and was treated for a severe chest infection. The antibiotics were strong enough to treat pneumonia! This infection completely wiped me out; I spent most of my days in bed, up through the night and was absolutely exhausted. I picked up a little after two weeks or so, however I was very tired and couldn't seem to get back to my usual self. Fast forward to March 2016, I was back on antibiotics for a second severe chest infection! This time I developed muscle pain, I was very weak and had no energy or interest to do anything. Intense (and visual) migraines also started at this point. I felt like my body was shutting down on me...

So this was treated again but I never really 'picked up'. I felt very low and I was exhausted. Through April to July, I was napping between two and three times a day, although this wasn't refreshing in any way. I became restless at night and even when I did sleep well, I would wake up feeling like I've not slept at all. My concentration levels threw themselves out the window and my brain quickly becomes a 'fog' most mornings. The pain was occuring around my back and arm joints, and would be very sharp and uncomfortable. 

I visited my GP about this and after so many blood and urine tests, I was immediately referred to Endcrinology as I had also put on some weight in the last 6-12 months prior to summer 2016. This referral was carried out from May to September 2016, where all of their blood, urine and drug-response tests came back normal. They couldn't do anything for me. 

Skip to October 2016, the fatigue seems to be worsening. I am missing university lectures because I am too tired; I call in sick at work because I am in pain and I cannot cope with it. By now, I was experiencing pain every week as oppose to 2/3 times a month. This pain has moved to my legs and knees, and it burns. It can vary from making me restless to severe burning and pain that cripples my ability to stand. It reduces me to tears and really frightens me. I am only 19 years old, and so I know something isn't right when this happens! I was prescribed Amitriptyline and I have been taking those every day. They do help me relax and sleep. 

More blood tests have been carried out (ie joint problems) with my GP, every thing you could imagine - all results clear. I was described as a "medical mystery!"... So now I am being referred to Chronic Fatigue Synrome at my local specialist department. 

I suppose my questions are, what are your experiences? Do mine sound similiar to yours? Are you convinced with me? What should I expect for my first appointment? I am really hoping that this is my final stop with appointments, tests and referrals. This has been ongoing for over a year now, it affects my daily life and I just want answers. I feel as though this is the answer to all of my symptoms. 

Thank you, Sophie. 

2

Hey Sophie,

Your symptoms sound similar to what I first experienced with CFS. I was first diagnosed used with post-viral fatigue symptom which sounds a lot like what you may have. Many cases of chronic fatigue syndrome begins this way and is the cause of having a virus of some sort and then the body develops this.

I was also given amytryptline to begin with, this didn't help me as it increased my fatigue but if it helps you that's great.

My only advice to you is to try and do as much as you can but don't push yourself. Try and have routine appointments with your GP and try and get yourself on the physio waiting list as soon as you can!

To help with the pain, I do yoga. It helps strengthen you as much as possible.

I'm also 18 and at uni and although it can be hard, just know it's possible! As difficult as it is, try not to get yourself down and think of the negatives with this illness as it's not helpful and can put you into a downward spiral.

Just focus on what you can do and try to improve, it always helps me to try new things that may help.

It's worth asking your GP for Ibruprofen Gel for the pain, especially joint pain. If you feel you can, try and avoid heavy painkillers. I'm on tramadol which helps with the pain but makes you feel tired and sedated.

Please let me know if you need anymore advice!

Hope this helps! And good luck with your appointment!

3

Hi Sophie at the moment for it must be very distressing I was diagnosed with chronic fatigue a couple of years ago after a respitary infection your symptoms seem very similar to mine it was horrible I know but I am recovering now a little it's important at your stage not to push through the fatigue don't try and fight it whatsoever rest as much as you can stress will only aggravate your symptoms once you have seen the chronic fatigue clinic and they will have asked for all blood tests then I suppose it will be peace of mind for you rember you are very young and you stand a good chance of recovering if you are working or at college it might be a idea to take some time out I had to give up my job unfortunately but keep your chin up relax as much as possible hope you get some answers soon

4

Hi Sophie, 

I'm so sorry that you are experiencing this at such a young age. I was diagnosed with CFS 25 years ago and have experienced many ups and downs during the course of my illness. I also take an trycylic antidepressant which helps to sleep. It is believed that many people with CFS do not get  restful sleep or REM sleep leaving them exhausted.

Many years later, my 16 year old daughter started to experiece symptoms similar to what your describing. She had a very bad flu and had a very difficult time recovering from it. I was terrified that somehow my duaghter had inherited this from me. To make a long story short, she is 21 years old now and is doing much better.  It is believed that if you are diagnosed with CFS at an earlier age, you have a better chance of recovery. Please take care of yourslelf and do everything you can to regain your strength and get your health back. Pace yourself and get rest when needed. Do not listen to people who tell you to push yourself. With the proper relaxation and rest you are now getting from the new medication, you will hopefully regain your strength. 

Good luck and hope you start feeling better.  KPD

5

Sophie--Since I've been on this forum, I've read countless posts similar to yours. Your symptoms sound very much like ME/CFS. This illness is only a "medical mystery" to uninformed doctors, whose numbers are legion. It sounds like you're on the right path now, though. There are no biomarkers for this illness, which is why tests come back normal.

6

Hi Russ151

I am taking it as easy as possible, however I am training to be a teacher at university and so that is pretty full on.. I spend my weekends planning and preparing for the classroom too. I have missed days though where this becomes too much. I am just hoping that I am on the right path now

Thank you for your help

7

Hi Becky,

It's really helpful to know you're a similar age and experiencing the same thing! My symptoms have been occurring for 13 months now and so I feel confident to say that this has moved from post viral syndrome to chronic fatigue syndrome. Whether the specialist agrees though I'm not sure :-(

The only medication I take it Amytriptiline, it does make me very sleepy and drowsy and so I only take it at night. The following morning is difficult to deal with but it helps me sleep and so I get on with it I suppose.

Thanks for your advice, will keep in touch!

Sophie

8

Thanks Jackie, hopefully I'll get this sorted!

9

Hi Sophie well yeah i think your on the right tracks but you really need to listen to your body tho I have to be honest as possible here I was Miss diagnosed for nearly 2 years it was gradual for me until it became severe and I had to give my job up and I haven't worked since when I look back If I would have known I had m e I would have stopped worked early and given myself the best chance of recovery you really can't fight this and push on with things at this stage I'm sure the chronic fatigue clinic will agree good luck with Sophie

10

Hi KPD,

May I ask how your daughter found the referral / diagnosis process? I don't want to be moved from clinic to clinic again or have to wait much longer for an answer.

Hope you are both well,

Sophie

11

Hi Sophie, 

Her internist actually ruled out anything serious such as lupas, cancer, etc. and diagnosed her with Post Viral Syndrome. She was 16 at the time.

She/we became so frustrated with the entire process, so she started seeing and adolescent phychiatrist. He treats her with something for anxiety/depression and sleep. She started exercising gradually but at her own pace using a personal trainer to get her strength back. She now is back in college and doing very well. She has periods or days were she feels very exhausted and requires napping or resting during the day. But, she is much better than she was when she first became ill. 

I forgot to mention that the doctor who diagnosed me 25 years ago left our area, and I haven't yet found anyone as knowledgeable in the field. 

I can understand your frustrations and would not want to be moved again to another clinic. Do you feel like you got the right diagnosis already? If so, I would try to focus on getting better by resting, trying to get the proper sleep, practicing some meditation, and pacing yourself-that means doing a lot less than you used to do. 

Hope this helps some. KPD

12

I was diagnosed with CFS about 10 yrs ago. Fortunately I had a GP who after all the tests came back negative said I think you have CFS. Now I am single and was in a full on, intense job, so being tired and brain fog is not good. 

I went private, all that did was get a confirmation that I had CFS from one of the UK experts and then I was really left to myself. Yes even via the private route there is not much help, and now I understand why, because the ball is in your court. 

There is no magic pill for this one. I soldiered on for years, regularly booming and busting.Work due the week, all weekend in bed and often evenings too when I finished work.  

For years my GP told me to pace and told me the story of another CFS patient who was now doing triathlons !!!! How on earth does he do that I asked, well from pacing. 

After years of feeling ill I had enough savings to bite the bullet and given up work and start pacing. To cure the brain fog and concentration I started on Ipad games like Solitaire and  Suduko. When I first started it was impossibe to complete a Suduko and I used it as a measure of whether I was having a good or bad day. 

On the physical side for activity I treated curing this like running a marathon, except I need to learn to run first. So my activity was cycling. I started very,very slowly in the house just spinning the wheels for a minute, then 2. I spent a lot of time saying No and getting to a point where I didn't feel so bad the next day. I would then sit at the point for a while to get my body use to that activity and then take another step forwards again. 

2 years on, I rode 50 miles will carefully planning recently, but can now ride 30 miles with no after effects. 

Sorry there is no magic cure, you need to pace and then eventually hopefully you will get better. refuse to pace as I did and the illness will plagued you for the rest of your life

best of luck