What's it really like to have CFS/ME?
Posted , 6 users are following.
Hi All
I've been recently diagnosed with Chronic Fatigue Syndrome following 2 years of feeling ill and having extensive investigation and testing into causes for my symptoms, which until now have shown nothing. I was wondering if anybody out there could give me an insight into what its like to have CFS as I feel my doctor and specialist have been quite vague in describing the effects of this condition, whether I should be feeling the way I do sometimes and whether more tests should be done on me (explain why a bit later on).
On top of my CFS diagnosis I've also been diagnosed with IBS, Gastritis, Rectal Polyps (been removed, and tested), Anxiety and Stress Related Disorder. I'm currently taking Mebeverine, Omeprazole and 400ml of Fortijuce a day.
For the last few weeks I've been getting really bad achy pains in my right shoulder, right side of neck, top of right arm, all of which are affecting my mobility. On top of that I'm getting sharp pains in my pelvic area, and the upper parts of my legs feel achy and hurt when I move. At the same time it seems my IBS has flared up as well. I also get odd vision problems, like my eyes go into spasms briefly, then back to normal. I have headaches, feeling faint along with chest tightening, palpitations and laboured breathing, which can feel like I'm having a heart attack. I'm always tired, even if I sleep well, and feel too weak to be able to do most basic jobs around the house, most of the time I'm led up, and I am pretty much housebound unless I have help when out and about, and even then can only manage limited time out. There are other little things I experience, food intolerances, speech and memory problems that seem more prominent in recent months. Does this sound like a case of CFS/ME?
I only ask as I'm sure there are more tests I need doing to eliminate other possible causes. All my treatment to date has only focussed on my digestive system, I've had sigmoidoscopy, colonoscopy, endoscopy, abdominal ultrasound, loads of blood, urine and stool tests done, and nothing has ever shown up. I can deal with all the problems from my stomach down, as I know that these areas of me have been investigated, but I do start to get quite fearful of the problems I get from my chest upwards. I know that shortness of breath can be caused by extreme bloating, which I do get, but when its mixed with palpitations, chest tightening and pain, back, neck, shoulder pain, headache, feeling dizzy and faint, I can't help but think something else. Should I be getting this area of me looked at, just to eliminate other possibilities? I do have an appointment with a Neurologist in a couple of weeks, so will probably mention all this to him. I was referred to a Neurologist by my doctor as all my problems started when I was at work one morning and started to get back pain. My job at the time was physically demanding and the doctor wants to eliminate any nerve damage / problems I may have got.
My doctor has also referred me for some CBT for my anxiety, as he believe I could be getting panic attacks, which would explain the chest tightening, shortness of breath and palpitations, but I believe these are more down to fear than anxiety. I'm usually quite relaxed, even when going through most of these symptoms, as I said, its the shortness of breath, chest tightening and palpitations, along with feeling faint and dizzy that worries me most, and seems to bring on these symptoms. I'm also sure I've been sat down feeling fine and suddenly my heart will start racing for no apparent reason, this also brings on the chest tightening, palpitation episodes.
I'm a healthy weight, don't drink alcohol, my diet is quite rigid and samey due to the food intolerances I have, but I do eat well albeit with lack of variety, which is why I'm prescribed Fortijuce. I do smoke, but have cut this down a lot in the last year. Before all these problems started 2 years ago, I was able to do anything, eat anything and lead a normal life, so this has been quite a shock to me and I'm still struggling to understand and come to terms with being diagnosed with CFS.
Any advice, help, views regarding what I've written would be greatly appreciated.
Thank you in advance.
0 likes, 19 replies
paul75665
Posted
A quick update regarding my Neurology appointment a couple of days ago.
The Neurologist did quite a thorough physical examination, getting me to do various exercises, checking feeling, reflexes and reactions and had a good look in my eyes. She said that my reflexes and reactions were brisk, which was good and there didn't seem to be any serious worries, but she felt it prudent to organise a head scan just to be on the safe side. She has advised me to go back to my doctor concerning my back problems / pain, and get him to refer me to see a back specialist as this area seems to be giving me the most problems at the moment.
Not really much else to add to that, but all good news so far. I will update with results of my head scan, and any other investigations that I go through as and when I get them.
TheKernel paul75665
Posted
Hi Paul-
?Many of your symptoms sound very familiar to me, and are certainly consistent with an ME/CFS diagnosis. However, as I'm sure you're aware, ME/CFS is a syndrome, not a disease per se, so there are a huge range of symptoms. As I'm sure you're also aware, the clinical diagnosis is differential, i.e. they MAY arrive at this conclusion once they've eliminated other possibilities, but there is no definitive test for ME/CFS. Like you I went through a battery of tests, It took me over 5 years to get diagnosed, and ultimately only because I did because I did a ton of research and essentially led my GP to thhe same conclusion did I get the right diagnosis (plus I lucked out with a very understanding and clued up Consultant (Clinical Immunologist) who specialised in M.E. and basically took one look at me and verified the diagnosis).
?One thing that happended to me (and I know happens to many others) is that an inevtiable step on the way is often some sort of diagnosis pertainning to psychosomatic symmptoms (i.e. Anxiety or Depression). I was absolutely adamant this wasn't causal in my case but I had to repel a lot of professionals pushing me down this route; Not sure if this is something you've experienced yet, but be aware it will happen.
?Best wishes, and I hope things get sorted for you quickly. I found getting a formal diagnosis very helpful (about 18 months ago) as it helped my "credibility" (sad but true) in relation to dealing with benefit authorities etc.
paul75665 TheKernel
Posted
Thank you for your comments Kernel.
I'm hoping my diagnosis of CFS/ME, which was confirmed as a formal diagnosis by my doctor a few weeks ago, does have as you say 'credibility' when it comes to dealing with the benefit authorities. I'm at the stage of sorting that part of my life with CFS/ME out at the moment, and finding it quite worrying and stressful, I'm sure I'll get there eventually.
As for your comments about Anxiety and/or Depression, I've already been through that with my doctor, who has been using anxiety as a reason for some of my symptoms being worse than they are. Although, lately I have been managing to persuade him to start thinking that I do have anxiety under control, which I have managed to do by taking comfort in all the tests I've had done to date revealing nothing serious going on. I haven't had a panic attack for months now, and even when I did, they were never that bad and only happened every now and again. I do have some cognetive behavioural therapy to attend, but this is more to help me with the food anxiety I have developed. I get quite bad IBS symptoms often, a trait that comes with CFS/ME, and for some time now I've been on a low FODMAP diet. However, I do have to introduce the food groups I have been missing out, but I don't want to as I'm worried about the effects introducing these foods will cause. My dietician said it is quite common for people who suffer with IBS / food intolerances to develop food anxiety and believes that I need to try and overcome this before I start to introduce foods, as any effects will be hard to differentiate between a food intolerance and anxiety. I am sue of one thing though, accepting the fact that mostly all my symptoms are due to having CFS/ME, has made life a bit easier to deal with, or as easy as it can be anyway.
Thank you again for replying, and I wish you all the best for the future and hope you, and everyone else suffering with CFS/ME can lead as good a life as possible.