Previously fit 19 year old, Unwell for 15 months, could it be CFS?

Brain and nerves
1

So basically i was a fit and healthy 19 year old very active, playing football twice a week, very fit! Then out of the blue i came down with what i thought to be a bog standard virus/stomach bug, i was violently sick but ended up with a swollen appendix, they kept me in hospital until it settled down and then i was hoping to me on the mend but that hasn't been the case! 

I have had nothing but health problems since then, including a UTI, dry eyes, gastritis that means i have had to change my diet completely and now i suffer bad acid reflux! I have been back and forth to many different doctors and they have done every blood test under the sun and it has come back negative!

About 2/3 months after my initial virus i started to get bad neck and back pain which now over the 15 month period has radiated pretty much all over my body and my aches and pains are really bad, having said this i still pushed myself to play a bit of football, but now for the last 3 months i have had to stop as i seem to pick up injuries really easily and my body doesnt seem to be able to heal itself which is my biggest concern, its almost as if my immune system has stopped working! 

I have seen a rheumotologist who said my range of moment is perfectly normal and cannot see any problems so has said it sounds like post viral syndrome but i checked and that is just another name for CFS isn't it? But when my doctors talk about this post viral syndrome they just tell me it will go away in time and seem to dismiss the seriousness of it? 

I do think about going organic with my diet and trying to heal my body naturally but i can't afford to lose any weight as my stomach issues cause me to lose weight! However i don't know any other methods of trying to get better! I'm now 21 and have been unwell for 15 months, i've tried resting and doing light exercise but then my muscles ache from inactivity and then when i did play football my muscles ached before i even played and then took along time to recover, it used to 1/2 before i got unwell now it takes 1/2 weeks to even go back to a stage where i can exericise again, i'm still in pain but its bearable!

I'm on 3 tablets a night now of amitriptyline and in all honesty its not seemed to help at all! I am going to potentially try some CBT but haven't had a clear diagnosis which really frustrates me, i am only 21 cannot exercise and stay fit, cant eat well and can only hold down a part time job at the moment and have a lot of stress and pressure on me to move forward with my life but i can't with this illness! 

I do feel like a may have a mild form of CFS as not long ago i could play football and do some exercise but at the moment my ankle is injured/weak and has been for 3 months so i'm unable to play! Plus i can still work 3/4 hours a day as a part cleaner but i still do get terrible aches and pains. I have seen a private physio who has told me all these issues i have with my stance and tension in my muscles but i've always had muscle tension as i always played football and put strain on my muscles but the pain wasn't anything substational, just aches for a few days after playing, now i get pain almost every day even when i don't do anything! So i don't think its due to problems i've had before hand, i definitely think its caused by some kind of autoimmune disorder and quite possibly CFS! 

Sorry on the long message but any advice would be great! i've heard that young people have a slighter better chance of making good strides to improvement, i do infact know of somebody who was crippled with this for 3 years and had to miss school but now is pretty much back to 100%, just wondering how true this is as well? 

2

Really, 'CFS' is not a diagnosis that provides much information about symptoms.

Some Drs think that treating post-viral symptoms dismissively is a good way of psychosocially managing patients away from the 'sick-role' - although there's no evidence for this. Unfortunately, there is a lot of prejudice and quackery around CFS, and if you do fulfil the criteria for it, a diagnosis may not be helpful. I'd only go for CBT if you think tha the fear-anxiety model which underpins it may be playing a role in your health problems. Unfortunately, there are quite a lot of dishonest claims being made to patients about the value of CBT.

It is true that prognosis is better for young people.

There's not any evidence that an organic diet, or diet of any sort is helpful for CFS. (Maybe some evidence that being vegetarian is unhelpful).

It could be that you're doing everything right, and still not getting any better. Hopefully things will improve for you, but if they do not, remember that this is not your fault.

3

I'm so sorry you're unwell at such a young age. It sounds to me like you very well may have ME/CFS. I've also heard it called post-viral fatigue. My rheumatologist has used the terms interchangeably, and I don't think there's a difference. My first piece of advice to you, which may be difficult, is: don't push yourself! You could greatly worsen your condition and your chances for a full recovery. Your age is in your favor in terms of recovering. To optimize your chances for recovery, take it easy, eat healthfully (no sugar or caffeine, protein may help), get a full night's sleep if you're able, and try not to stress about your situation. Where do you live? If by any chance you're in the U.S., I do know some ME/CFS specialists (but you're probably in the U.K.). 

4

Hi

I have ME and so does my sister, cousin and distant cousin.

I also know 3 other people who have it !

Of all of us, it's the 18 year old who seems to have beaten it. He experienced the worst scenario and was bedridden for a long time, missed several years of school too. His parents had to carry and feed him. He even had his bed downstairs because of his weight. He has made a full recovery and is back in school doing his A levels.

I do know it takes a long time to find out if you have MECFS as the professionals like to rule out other things. When I first went through an illness, several years ago, the specialist assessed me as having MS and I was devastated; a year on and was making progress so couldn't 't get my head around it. I saw a specialist privately in the end because my gut feeling was that things didn't add up. glad I did in the end because I then found out the guy had got it wrong !

I now know the two illnesses do cross over in some way.

Today, I have been clinically assessed and told that I do have CFS/ME, attended a clinic specifically for this and now attend once a month. It's an informative session and we work through my patterns of daily life, experiment with new ways of living and, at the moment, I am just learning to relax...something I cannot do.

I googled the nearest ME clinic and emailed them.

I have very lucky because I have a sister and cousin who are consrantly supporting me through my illness.

One of my main issues is the groin pain I experience so I self medicate daily...which I have to say...is like getting blood from a stone because I hate taking tablets of any kind but U have been persuaded that

it is better, for now, to take the pain away as it is using up my energy.

I have also decided to take the smallest dose of sertraline once a day in the morning. I am hoping this will help to get my mind and body in sync again.

It is certainly slowing me down which is, maybe, what I need at the moment.

As you can see, I am at the beginning of my journey and have found no certainties as yet but am not going to let the ME take control of me.

I wish you every success on your journey and hope you find peace.

Best wishes

Jinny23

5

If you don't have a sympathetic dr this is a difficult condition to deal with.

I am a lot older than you and although I am not back to where I was but I can work and exercise and the key to getting there was pacing. I spent years of boom and bust and have learnt to say No I can't do that much only this much. The key for me has been being in control of my energy levels, controlling when I work and how much exercise I do.

I suspect that you can do it but football is out. You need an exercise where you control the energy, mine has been cycling. Don't move too fast, so I started with just 5 mins of cycling on a trainer just spinning the wheels. If you start with 30mins you most likely set your self back which is what I learnt. Monday I did 21.5 miles on my bike on the ride the furthest  I have ever been. Now taking it very easy this week    and its been a 15month journey to get there

Hope this helps