Self diagnosis

Hi Abby

I was new on this site a few weeks ago as I suffer from Osteoarthritis but am under a rheumatologist for unexplained raised inflamatory markers. He has also given me a diagnosis of CFS/ME and Fibromyalgia but this has been based on my symptoms that I have had for the past 3 years now and have been signed off work for 3 months. I can't even find the strength to get dresses or have a bath most days - I'm not only exhausted but have so many other symptoms you can read on my other entries. Mine has a possible onset which was around the time I had campylobacter infection and then caught colostrium difficle in hospital (hospital bug). Have you had any illnesses that you think may have been a trigger point? I am thinking you are probably suffering with stress and stress related illness can leave you feeling totally drained and give you many of the symptoms you describe. You need to see if you gp feels you should be signed off for a while so you can rest and give your body some time to recover. It is a horrible vicious circle but you must be positive - I really do hope it is not CFS. Take care and let me know how your appt goes.

Hey Abby,

My current diagnosis is post viral fatigue. Having been a high level amateur endurance athlete for about 6 years all of a sudden in Nov2013 starting feeling off, I remember around about Christmas time haw utterly awful I felt. Well I can associate with lots that you say, especially struggling to get words out. I told my dad and others I sometimes get really afraid because it's as if I am going to lose the ability to speak. Well anyway things that have helped me, and I have improved in the 5 months. The only thing that bothers me is I have an uneasy feeling in my chest, like my heart is being suffocated, I don't feel ill in others ways. It's only because of this I cannot run, swim etc It's like there is a blockage on my heart utilising it's full power. I pray and hope this goes away, because I am no enjoying life like I used to, I cannot feel the same way etc

So things that helped me, high dose vitamin C, 20g/day spread throughout the day in 4 5g doses. You might want to experiement with that for a week or 2. And medicinal mushrooms. Mushroom Science immune builder formula. It is quite expensive but I feel it relaxes me in some way and has helped me sleep much better. I'm naturopathically trained so have many years experience with supplements etc I say all we can do is eat well, rest well and pray. This is what I am doing to free me from this horrible condition.

I used to exercise 5 times week plus work, I've since cancelled my gym memebership because the will to go has been taken from me, it's not that I don't want to go, it's like this mechanism inside my body just shuts me down. Having trained my body for years I know it quite well. I think definitely talk to your employer. I've been off work since I was ill and financially it's not been easy.

Thanks for your responses guys

Gizmo1963; I did originally think it could be stress but when I think about when I first started experiencing these symptoms (a good few years ago) I hadn't started this job. I was working for myself and remember even then I was constantly tired with brain fog and really struggling to motivate myself on a daily basis and I was only working part-time hours from home. I have no doubts that working the hours I currently do aren't helping in any way, so I will have to do something about it.

I had an infected abscess removed from my lower back around 10 years ago and it took a long, long time to heal because the wound kept getting infected. Ever since then I have seemed to catch any bug going so that could be a possible trigger.

Again, waking up this morning from an 8 hour sleep I do not feel refreshed in the slightest. I physically couldn't sleep for any longer, yet I feel so fatigued.

David; I cannot imagine how you feel going from being so active to not being able to run at all. I too used to exercise quite a lot, I loved to go out for long walks and dabbled in running. Now it is near impossible for me to walk up two flights of stairs when leaving work without feeling worn out. I hate it.

I'm concerned that my GP will put this down to stress as that seems like the obvious link, but I genuinely think it's not the case. Obviously I'm prepared to go through whatever's necessary to find the underlying cause but at the same time I'm worried that they won't truly understand just how terrible I feel.

Hi abbey, cfs as 3 classifications of severity mild, moderate , and severe it's possible when you experienced the symptoms previously they were mild and subsided. Research shows that people developing cfs/me and fibromyalgia are usually high achievers and from your post it looks like you have a stressful job. Many number Of Things can trigger cfs one of these is your physical and mental health under prolonged stress. In order for you to be diagnosed with cfs you need to have the symptoms for at least 6months or more and all other conditions with similar symptoms need to be ruled out by blood tests. If you are adamant that stress is not causing Your symptoms you need to make a list of all the symptoms you have book a double appt with your gp if your practice allows and if stress is mentioned you need to be very proactive in informing them that you are almost sure it's not stress but that you feel that you fit the criteria for cfs. Although it's very difficult early diagnosis is essential to help you manage this very debilitating array of symptoms.

Hi Abby. Your symtoms sound a lot like CFS and you are correct to suspect that stress alone does not explain brain fog, lethargy and pains.

I and my family members have self-diagnosed me on three separate occasions with three severe conditions, and I only got the doctor's confirmation afterwards. Like Susie says, it is also typical for this condition to affect people who have previously been very active. That's because with problems in blood circulation etc., people with CFS unconsciously feel the need to activate their sympathetic nervous system, and it also happens that they enjoy excercise.

Eventually you'll need to talk to your employer, and it may be helpful to do it sooner than later. I could not have continued working withouth explaining what's wrong with me.

Hay there from down under ..Australia.. While u are in the process of diagnosis ... Have you been tested for SLE LUPUS? I have had lupus for 7 years now.. Iam sunlight sensitive , joint and muscle pain.. Several fatigue. I have trouble with memory and with my letters. I make a lot of spelling mistakes and don't realise it...I have problems concentrating.. Everything u have said ,,, sound like lupus to me... Please consider it...

I saw my doctor this afternoon and she suspects I have Fibromyalgia which I guess isn't too dissimilar of CFS. I'm having routine blood tests to rule out the usual suspects and if it is what she suspects she said she wants to trial a course of anti-depressants to see if that helps with the brain fog. I've been advised to cut my hours down at work, not to over do things and listen to what my body is telling me.

I'm so glad that she didn't instantly jump to stress and actually listened to me.

Getting my bloods done tomorrow so I shall keep you all posted!

Hi Abby

So pleased to hear your doctor has listened to you and is starting to help you. Cutting down your hours will hopefully help you but your work manager must also understand not to place any extra pressure on you. Sorry but I want to say so much more but I'm rather brain dead tonight. You take care and will catch up with you after my rest - if I'm able to sleep. Take care xx

Hi Tracey

I was reviewing lupus site today as I've been very sensitive to sunlight and have noticed I have redness across my nose and cheeks and also been getting scabs in my scalp so my rheumy has asked me to see a dermatologist. Just waiting for an appt x

Glad to hear from you.. The waiting for test results aren't easy. Glad to see that you are taking everything into consideration. They may do a small biopsy on the rash. Depending in how bad the rash is.. I have had that many types of tests at the beginning of lupus and diagnosis does take a long time. Keep us posted.. Best of kick.

I had my blood tests yesterday morning and luckily for me my mum is a phlebotomist so she did it for. She's ever so gentle and it didn't hurt at all, although I did get a sensation where I could feel the blood being drawn out which I have never experienced before.

Afterwards my arm ached SO badly, much more than normal. It was like I couldn't grip things properly and my hand was extremely cold for a good 6 hours afterwards. There is slight bruising around where the needle was inserted but nothing severe.

Have any of you found that the side effect of blood tests have gotten worse with the condition?

Well darlin with lupus , everything is over sensitive...did the blood tests include lupus? Let me know how u went. Luv Tracey.

Hi. My son had bad fatigue and headache for around 5 months 18 months ago. He had blood tests and

nothing showed up. Then he seemed to get better and back to normal. About a month ago the fatigue came back and he is once again wiped out but managing to work but no social life at all. He is 30. He doesn’t

have the joint pains which I read about. Could this be Chronic Fatigue Syndrome. He was abroad for 5

months before it started 18 months ago and wonder if he could’ve picked something up.

Thanks for any insight into this.

Update! My mum works at my doctor surgery so was able to call her friend at work to check if my blood results had come back. They had and after getting a doctor to check them they have come back...NORMAL. I knew they would. I guess this is a good thing as it means I'm one step closer to a diagnosis, but part of me wanted it to be an underactive thyroid or something that was more easily treatable.

I am feeling terrible today. I had to work a full 8 hour day on Saturday (although I spent most of the day in the staff room just delegating tasks to the girls) and it seems to have wiped me out entirely. I am so exhausted and achy and the brain fog is horrendous. I have also noticed, since last Wednesday/Thursday a return of my hyperhidrosis. I was first diagnosed with this around 4 years ago and get it in my palms and soles of my feet. I hadn't had it for a good year before now (I received Iontophoresis treatment when first diagnosed) so I was just wondering if any other CFS sufferers also have this?

Am seeing my doctor tomorrow so will post another update then!

Hi Abby

have you had your blood test results back yet and did anything show up? I've been suffererring with some very severe migraines with pain through my sinuses, tooth and ears. Always right sided and had this for many years. Also bad tinitus. My tiredness is made even worse by this and it takes so much effort to just even climb out of bed. Feeling down - just want my life back.