I think I might have CFS

Brain and nerves
1

Hi everyone, 

Last November I became very ill and was bed bound for 2 weeks unable to get out of bed, I had very bad glands in my neck, groin and under my arms, I had fever, exhausted, had pain in my spleen and liver. I was given blood tests which showed the Epstein Barr virus to be positive. I thought at the time I'd just get over the virus and back to work and life, however 9months later I'm still not back at work or well. 

I think I may have CFS. I'm very tired all the time, I feel dizzy (both vertigo sort and low blood pressure type), I have poor memory and concentration, when I ask my parents where something is I give the wrong word for the item. I can't tolerate heat or cold, the heat from a plate of food can set me off into sweats and when I fall asleep I wake up feeling like I have hypothermia (my thyroid tests are all fine though). 

If on a Saturday I pop to the supermarket for 1hour, on Sunday, Monday Tuesday I can hardly get out of bed and my joins and muscles kill. I feel like I have flu on those days too and have a slight fever. 

Umm there's more but I just can't think. I just know that since November I can't do things like I use to. 

Oh yeah, I can't tolerate noise at all, everything has to be quiet. 

My feet and legs really hurt most of the time. 

I'm just not sure what to do or think anymore and I feel like drs and people don't take me seriously. 

I'm 33 years old, I was working and in part time study before all or this happened. I have a feeling I was working too hard before and not getting enough sleep before all of this happened.

Sometimes I feel when I sit down I'm made of stone and can't move again, but I push myself to get up.

I'm just so tired of all of this and I worry what if it's just in my mind, but when I've exerted myself I feel so bad I know it's not. 

2

Sorry to hear about your current health problems.

The symptoms sound very much like CFS. 

Getting a diagnosis can be tricky as many GPs are clueless about this. And there isn't a pill they can prescribe.

Easier said than done, but the main thing is to get the rest your body needs and minimise the levels of stress in your life (and therefore recognising what these stresses are - that alone can be difficult). Every sufferer I know has got better (I am well on the way myself), but it can be a long haul and so a lot of patience is required.

Good luck!

3

Hi Shabbychic. This is NOT in your mind. No one wants to feel this way. Many of the symptoms you have described sound like those experienced by people who have CFS. I would try to have a thorough exam by a good doctor along with a complete set of blood tests to rule anything else that could be going on first, though. If it is CFS/ME, pacing yourself is the best thing you can do to get better. Getting the proper sleep is also important. Many sufferers are exhausted, yet they can not sleep or have disturbed sleep patterns. There are medications and some natural products that can help. Also, avoiding emotional and physical stresses are so important. Good luck. KPD

4

Hi there Shabbychic

Like you I have been ill since November and I have just started posting on this site to get as much info as possilble from other sufferers. Whilst ME/CFS has come up in discussions with doctors, the specialists refuse to commit to a definite diagnosis. I have all your symptoms and more and this indicates that the ME/CFS umbrella covers a multitude of dignoses.

I have had mega amounts of tests, scans, x-rays and the like....all of which have been negative. I saw a rheumatologist yesterday and she took an entirely different tack which has led me to consider that my condition may be heart related. Yes I had a thorough physical examination...no joy there...no joint pain and no muscle weakness but in the ensuing discussion she was especially interested in palputations of the heart which I experience sometimes with accompanying discomfort. She is sending me for a PET scan; I will have to wear a heart monitor for a few days and then see a cardiologist. This represents a different route for me and does not seem like another elimination exercise.

I am fortunate to live in Spain where the health service is beyond exceptional.

I sympathise and empathise with you. Whatever we have got and whatever label is put on it is little consolation given the symptoms and the speed with which we are struck down. Little is known about the condition except that there is no test, as yet.

I would be interested in your progress and the routes your doctors suggest.

If I have one gleam of light it is that I've had so many tests which up to now have been negative, I can rule out some very nasty diseases.

Kindest regards

Rob

5

Hi Antand, what you say about minimising stress really is true, I've noticed if anything stresses me a little bit, I feel like I will pass out. I do suffer from anxiety which I'm on cipralex for, but this has never ever happened before, I just can't seem to deal with a tiny bit of stress, it's odd.

I'm so glad you're on the mend  thank you. 

6

Hey KPD, I've had 4 lots of blood tests since november and all of them are fine, the EPV one came back positive though. 

My sleep patterns have always been a little bit dodgy, but lately they are more so. I can't seem to make it past 6hours in a day, I've found if I sleep all day and get up in the evening and am only up from 6pm-12am and then sit up all night in bed I don't feel too bad, its when I get up around 10am, I cant make it past 5pm. 

I'm a little bit stressed at the moment as I think I'm about to lose a job I have loved (I'm a busy sales advisor, not the best job but a job I was able to do as I studied and my work mates were like family, but since being ill no one wants to know). 

Thank you. 

7

Hi Robert, I'm so sorry you're going throught he same sort of thing. Did you suffer a virus of some sort in November? I hope everything will be ok with your tests, I'm glad your tests have ruled out anything too nasty though, that is good. I'm a wimp and pass out at every blood test, it's not that I even look at the blood or needles but I just seem to have a reaction to having blood taken.

Before this happened I was a little sleep deprived but I was able to deal with it, I sometimes wonder if this is what has caused everything to be honest. In my sales job I'd travel an hour to work everyday, and for several hours a day continuously run up and down 3 stories of stairs to the stock room all day, because of my hours I'd have no lunch hour, so I'd then travel back home for another hour before I finally got rest and to eat. My job was quite demanding as the shoes I sold were to elderly people and they;d try around 10 pairs each in around 3 sizes, they'd also forget what they'd tried too and it could be a lot of work. I did love that job though, I liked helping the elderly. 

Anyway I've gone a little off track with the subject now, I'm just worried about when I'll be made redundant.

 

8

I'm so tired but can't sleep right now, I have quite a high temperature and I'm worried about losing my job although I know I can't keep it like this.

I'm claiming ESA at the moment (I'm from the UK) and I don't know what happens if I quit work or if I'm fired. I don't know what will happen with ESA as I haven't been disgnosed yet. I'm just really worried about everything.  Surely they can see no one wants to feel like this

9

Hi Shabbychic, 

Since the EBV came back positive, I would ask your doctor about treating you with anti-virals. There is a small group of people with CFS who improve when treated with them. I tested positive with the Herpes 6 virus, and anti-virals helped me a lot. They did not cure me, but they got be back to the point where I was funtioning at about 50-75%.

Sleep is so important and what you are describing is so common for CFS sufferers. I would also ask the doctor if he could recommend something to treat the sleep. 

I also know what you mean about stress. It is so important to find ways that will reduce our stress levels, since stress definitely makes the symptoms worse. I want to recommend a book that I read recently. It is called Fighting Fatigue by Sue Pemberton and Catherine Berry. It is a practical guide to managing the symptoms of CFS/ME by reducing stress, pacing yourself, and grading your activities. Hope it helps. Good luck. KPD

10

I'm so sorry you are feeling worse right now, Shabbychic. Since you have a temperature, you may have something else going on. I would suggest getting the fever checked out.

I know it is hard to rest when you are worrying about losing your job. Take care of yourself right now, though. You need to focus on getting better. KPD

11

Hi Shabby,

I have been sick since late October, My daughter since November, she is not better, i am a little better but still tired and have the Epstein Barr/Mono symptoms in lighter form. My daughter has had the dizziness, low blood pressure symptoms.

It makes me wonder if maybe the virus is morphing into a longer lasting form. i read an article the other day about CFS/ME and research being done by a Dr. Montoya with Stanford Hospital in the US. It was interesting they think it may be related to an infammatory response, the article was called  What is infection-Associated chronic fatigue syndrome. Stanford is an amazing hospital and very well respected.

I sure hope we find answers to this virus. My daughter and I were very healthy and then I got sick ended up in the ER and they told me I had mono, that was clear in December, new testing showed Epstein Barr, my daughter did not test positive for mono, but then was also diagnosed with Epstein Barr.

Have you noticed any improvement at all in your symptoms?

12

Hi there, 

My friend was in a similar situation and her work refused to have her back on light duties and said she could only return when 100%. Although this upset her at the time, there was no way she could work so she claimed ESA after SSP stopped. Work kept in touch for more than a year and she was constantly assessed to see how she was. She didn't recover enough and so she was discharged on health grounds.  If you aren't fit to work, you aren't fit to work sadly. I loved my job too. It's hard to stop doing things we love but, recovery is what we have to work towards. 

Go to the GP and ask about post viral fatigue. This can lead onto CFS/ME but you need to have had symptoms for more than six months I think. Ask to be referred to a CFS/ME specialist service (this we have in the UK) there is usually a bit of a waiting list. You will have to have a blood test to rule certain things out and if all clear will be given añ appointment to see a specialist, they can write a letter confirming the condition and help give you tips to help your symptoms.

Get as much help from others as you can. An hour in the supermarket is too much it sounds. I cannot carry things so I get my shopping online which is much easier. I also ended up getting a cleaner in once a week.

Also, rest as much as you can. Break things down into small amounts and rest in between.

Hope this helps.

Beverley

13

Hi everyone, I just want to quickly update what's happened. Yesterday my doctor phoned with results from my recent blood tests and I've been told I have Addisons Disease and not chronic fatigue syndrome. 

Good luck everyone

14

Hi there,

Such similar symptoms. How do you feel about the diagnosis and can you have medication that will improve the symptoms?

Beverley

15

Hi Beverly, sorry I hadn't seen your reply, I've been so messed up from everything, though I'm happy to say I don't have Addisons and it is just chronic fatigue after glandular fever.

It's been a rollercoaster of emotions though. My Gps (I saw 2 gps) and they said I definitely did have addisons. So i then went for the syncathen test at hospital. I pestered my gp for the results which came back fine, but I had to wait to see the consultant for confirmation of this, I only saw him just over a week ago and he has told me I have chronic fatigue. It's been emotionally tiring.

16

Hi shabbychic,

Absolutely understandable that your mind has been elsewhere! It takes alot of energy to  keep being persistent with doctors when you are convinced it is something else. Well done for not settling for the diagnosis that didn't feel right. 

How do you feel about it being CFS/ME after glandular fever? Does it feel more manageable? 

Beverley

17

Hi Beverly thank you Yeah, I'm very happy its not addison's disease. My consultant was optimistic I'll get better from CFS after having glandular fever, so yeah I'm happy. I'm happy to know that one day it should go away, even though it might take a while

18

That's good to hear, sounds like you have been given new hope from your consultant's optimism too ☺

Keep us posted

Beverley