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
Patrickgeoffrey paul75665
Posted
I would recommend reading the wiki description of CFS.None CFS is not an actual disease but a name for a group of symptoms,it may actually be caused by different unknown diseases,it is a diagnosis given when all other diseases have been eliminated.How CFS effects people varies.many bed ridden,but only about 1 in 5 are able to hold down a full time job.EM,CFS,Post Viral Fatigue syndrome and Post Viral Syndrome all are names that are used but the symptoms can vary a lot.They are all names for symptoms but not official diseases yet.Certian criteria have to be met for a condition to be called a disease. There isn't s test to say you have it,it is not known what causes it and there is no treatment proven to be effective though clinical trails. I have been dealing with a similar condition for about 40 years but I have never been diagnosed with EM,CFS or any other condition.My condition is directly caused by the flu. my last two relapses start with getting the flu. I came down with the flu in January and I am still doing poorly my symptoms are trouble walking,stiff sore tight muscles,flu like symptoms,nausea brought on by physical exertion but it doesn't usually last more than 2 hours I always feel like I just ran a marathon. I do not suffer from fatigue. I sleep well,wake up rested.never feel weak but I do wake up feeling nauseous frequently and my muscle are sore and stiff when I wake.The longer I sleep or rest the worst that can get.Just walking my dog in the morning can make me feel sick. I do hold down a full time job.Yesterday I had to work though 2 hours of feeling nauseous I struggle to walk form my car to inside the building and back after work that walk can make me feel nauseous.Sometimes after walking I start shaking that usually makes the nausea go away.My condition keeps getting worse as I get older and comes directly with the flu now. I did spend a week in the hospital when I was 17, I am 58 now.
GeorgiaS Patrickgeoffrey
Posted
Patrickgeoffrey GeorgiaS
Posted
I was first admitted to hospital when I was 17 for week,that is when I had my first glucose test that was 42 years ago,one of my former GP is now the director of a large city hospital, the specialist at his hospital that I saw more that ten years ago said my problems are probably caused by a virus,there is no test to tell which virus and no treatment. I have had spinal taps,muscle biopsies,MRI,Ecgs EKGs, I have been to moire hospitals than o can count had every test any specialist can think of, I did work for a medical diagnosis lab for over 20 years, I knew the people that would sort my specimens and the technicians that did the test,my job took me to over 40 hospitals,hundreds of nursing homes and thousands of doctors offices,they were doctors that saw me daily they always asked which specialist I was seeing and always replied with if he can't help you no one can
olivetree paul75665
Posted
Sorry to hear that you are going through this. Unfortunately your symptoms do resonate with CFS/ME. Most of us have variations of symptoms and severity also varies. It is not unusual to have IBS with this condition. I think many of us worry at times that something may have been missed by doctors and of course that is possible. Not enough is yet known about the illness and the very name is not helpful. So much more that just fatigue - and most people with no experience of this do not realize the extent of it or how debilitating it can be. There is no known proven treatment and we sufferers are a bit of a mystery and a pain to doctors as there is little they can do. I hope you are able to get some answers when you see the neurologist but in the meantime be kind to yourself, get as much rest as you can and try not to push yourself too hard. Pace your activity between rest/relaxation, cognitive activity and physical activity.
jackie00198 paul75665
Posted
Hi, Paul. I don't know if this will make you feel better or worse, but reading the symptoms in your post, and given that you've had bloodwork and other tests, your symptoms sound spot-on for ME/CFS. And I do mean, all of your symptoms. For instance, heart palpitations or racing heart is a common symptom, and one that I had. I thought I was having serious heart issues so went to a cardiologist. He found nothing. My racing heart was easily corrected by taking a beta blocker: metropolol. Not just any beta blocker is appropriate--you have to get the right one. ME/CFS can also actually cause anxiety and depression as a primary symptom, not just the result of having to deal with the illness. In other words, bad stuff (don't you like my medical terminology?) can actually be happening in the brain. By the way, I've seen lots of people get sent down the wrong path by ignorant doctors, being treated like they have emotional issues, like depression or anxiety, when they are really suffering from this illness. So they end up taking psychotropic meds instead of, say, a beta blocker. ME/CFS can also cause all kinds of pain, from nerve pain (like tingling, shooting pains, and heaviness in extremities), to muscle aches and joint pain. This illness affects so many body systems that the list of possible symptoms is endless. A good source of information is the "solve ME/CFS initiative" website. Sure, you could have more tests done if that will make you feel comfortable and ease your mind. However, the list of possible tests is also quite long. I just stopped after bloodwork and then was very quickly diagnosed by a specialist. I highly recommend you see such a specialist, like an infectious disease doctor or a rheumatologist who's familiar with this illness. Seeing the right doctor can save you a lot of time and hassle with needless tests. But, again, your symptoms are screaming out: ME/CFS!
paul75665
Posted
Thank you all for taking the time to share your kind words and helpful comments. I thought I'd reply to my own discussion so I can address all of you that have responded. My best wishes go to all of you having to deal with these symptoms and the illness, it's definitely no fun, and judging by some of your comments, some of you have to deal with a lot worse than I do at present. But your comments have helped reassure me that all my symptoms are most likely linked to CFS.
Looks like I can safely say that the diagnosis of CFS/ME I was given is looking more likely to be the correct one. I have been trying to come to terms with it, but still find it very hard. How can I go from from being a pretty much perfectly fit and healthy individual, to someone who sometimes even struggles to twist the lid off a jam jar. I think it'll take a while for me to accept it still, but will probably never understand why??
With regard to your comment about beta blockers jackie, my doctor asked me if I wanted to try taking them for a while, but I was quite weary of this due to the fact they were beta blockers, so decided against it. I've always seemed to have trouble taking other antidepressants, they've always reacted badly, so I've been unable to take any of these meds that can help with anxiety. How do you get on with beta blocker jackie? Any side effects (especially one's when you first stated taking them)? My fear is that when I'm at rest and in a relaxed state, my heart rate is quite low, say anywhere between 58 - 68 bpm, and never had issues with blood pressure. From what I understand beta blockers tend to lower blood pressure and heart rate, so in a relaxed state, while taking beta blockers, surely my heart rate and bp would be too low. I might be wrong about this as its all hypothetical, but thought I'd mention it anyway, and see what you thought. I know if I was more relaxed when out and about, I'd be able to stay out longer and would be able to enjoy myself more. Just a bit of a life now and again would be nice, and I'm interested in anything that might be able to help me to acheive this.
I'll update this discussion after my Neurology appointment and let you all know whats said and if there is any other course of action they are going to take.
Thank you all again, and all the best!
GeorgiaS paul75665
Posted
Paul I get Beta Blockers from my doctor and they're for stress and anxiety. I rarely use them because I generally take herbs for everything but on an especially stressful day, such as someone coming here I'll take one.
They're low dose. Low dose Beta Blockers are said to help with ME but not higher doses. We tend to get very stressed somethimes and this doesn't help us at all so they can be useful.
But saying that I prefer to stick to Passionflower, Valerian for sleep, Vervain for balancing my moods and other herbs.
paul75665 GeorgiaS
Posted
Thanks for the comments Georgia, very interesting.
So are you saying that Beta Blockers are just as effective when you take them as and when you need, as well as a constantly low daily dose? Thing is when I wake in the morning, my physical state almost always gives me a good idea if I'm going to have a bad day or a good one. My bad days are usually the most stressful and worrying, obviously, so being able to have something to take the edge off on those specific days would be very useful indeed.
I'm not one for taking medication, I don't like it really due to some bad past experiences, but I'm desperate to find some help for those especially bad days, so any views / advice you have on this would be greatly appreciated.
jackie00198 paul75665
Posted
Hi, Paul--Regarding beta blockers. I had no problem or side effects whatsoever in taking the beta blocker, metropolol. This, in spite of the fact that my blood pressure was very low before I got on this med. Logic would tell you that the beta blocker would therefore be problemmatic and bring my blood pressure down to an extremely low level. That never happened. I'd also read somewhere that with people having ME/CFS, sometimes a beta blocker can have a paradoxical effect, actually raising blood pressure. In any case, I'd say you have nothing to lose at least trying one. My only advice is to start on a very low dosage, stay on that for 3 to 5 days, then up the dosage just a bit, stay on that for a few days, etc. I find that this method of taking any new med minimizes side effect. I do often do this by simply cutting a pill in fourths. (You can't do this with any time-released meds.) Also, if one beta blocker doesn't work, try another. But the prescribing doctor should be knowledgeable about ME/CFS, so that he understands about the sensitivity and reactions of you to drugs, and more than that, understands the appropriate beta blocker to givie to you. Taking this beta blocker totally corrected by racing heart. Also, I'm extremely drug sensitive, as are many people with this illness. I can't, for instance, tolerate antidepressants. This is common for those of us with this illness. So what I do to deal with any anxiety or depression is meditate. There is a free, secular, 6-week online course of meditation. Google "Palouse Mindfulness." This course is sponsored by the University of Massachusetts Medical Center, and by Jon Kabat-Zinn, who is very well respected in the field of meditation. There is nothing far out or weird about the course--it's very practical, and geared to peope who are ill. There is material to read as well as meditation/mindfulness exercises. I figured meditation would help with anxiety. The big surprise is that it helped immensely with my depression and ability to cope with this debilitating disease.
GeorgiaS paul75665
Posted
I know what you mean about waking up some days. Some days I wake up in a state of utter confusion and I don't remember that it's because I have ME so there's nothing to hang on to. I simply don't know where I am or why I'm feeling so terrible.
Of course as I slowly come around things dawn on me and I realise where I am and that it's ME making everything feel so bad, so I have to be incredibly brave and say positive things to myself to minimise the fear period. I suppose I'm pretty good at it after more than 10 years of being virtually bed bound by ME and on my own.
Some days I can get myself together in a few minutes but that's from practice and self discipline. Other days it takes longer. But once I'm in the waking world, to an extent. I take the herbs and supplements I need if I'm physically capable. If I'm not I go back to sleep.
I only take the beta blockes, as I said, if someone like a health professional is coming to my home and I'm scaed out of my wits. Otherwise no, the herbs are better.
GeorgiaS jackie00198
Posted
Jackie you're very knowledgeable! My doctor isn't knowledgeable about ME but he does try his best to work with me and iif I suggest things if he's able to prescribe them he will
He prescribed beta blockers because I asked him to after reading that a low dose may be beneficial to us. But my own instincts kicked in and I found that I didn't want to take them every day. I have to trust myinstincts or I have nothing. Like I said to Paul I save them in reserve for stressful occassions and take herbs for every day symptoms.
I've been utterly enamoured with John Kabat-Zinn since I read 'The Divine Matrix'. Even though my ME is so extreme that I can't mediitate or follow advice it does't matter because I'm inspired by him!
Also by 'The Holographic Universe' Michael Talbert.
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paul75665
Posted
Hi All
Firstly I'd like to thank all of you that have replied to this discussion so far, I really do appreciate your info, help and advice in aiding me to understand just what suffering from CFS/ME is like.
I have a query regarding some symptoms I experience on a regular basis, and was hoping some of you may be able to confirm whether these symptoms are also another part of living with CFS/ME.
Every now and again I get these bouts of pressure type feelings in my head and neck, they are accompanied with feeling quite hot in the face, feeling quite faint and dizzy, and I get the sensation of almost passing out, along with a slight sensation of struggling to breathe. At the same time my eyes go through very brief, almost split second periods of what can only be described as having a spasm, I can focus my vision on something and then suddenly my vision goes either blank, or flashes, then goes back to normal. It not a frequent occurence, I've been feeling these symptoms since I woke at 7am this morning, and the eye spasm and pressure feelings have happened about 3 - 4 times. I was wondering if anyone else sufferers from these symptoms, or have any views or thoughts on them. These bouts seem to come on with no warning at all, they just happen as and when.
I know the doctors, and others will probably blame anxiety to a degree, but I really don't feel anxious, I'm led on the sofa right now, dealing with the usual aches and pains, my heart rate is nice and slow, I don't feel panicky, worried or stressed in any way, so don't believe this has anything to do with anxiety.
Any thoughts or views on this would be greatly appreciated.
Many thanks in advance
jackie00198 paul75665
Posted
Hi, Paul--First of all, so sorry for all that you're going through. I've had ME/CFS for a long time, so I understand how anxiety-provoking this can be. I've had many of your symtoms, a lot of which have eventually disappeared over time. Here are some of the symptoms that have disappeared: shortness of breath, digestive issues, anxiety and depression. I'm still dealing with immense fatigue, and with nerve issues, like tingling and burning sensations, stabbing pains, heaviness in legs. I actually had a nerve conduction test done, and it came back normal. My specialist said that was because it's the small nerve cells in the brain that are affected with this illness. The only way you can check those is do to a biopsy. No thanks! I'm going to stick my neck way out here. The following is only my opinion, and I'm not a doctor. Yes, you can continue to get every test known to mankind. But you've already had a huge number of tests done. Way way more than I ever had. Your symptoms sound spot-on for ME/CFS, including your anxiety issues. As explained by my doctor, anxiety can be directly related to what this illnes does to the brain. From reading your email, my impression is that it's your anxiety that is driving you to take all these tests. I dealt with my anxiety by learning meditation. Also, it turned out that an anti-anxiety med that I was taking (Ativan) was actually caused most of my anxiety. So I went off it. Your specialist should be able to explain the possible effects of the illness, so that your mind will be more at ease. What kind of specialist are you seeing? I think the most appropriate specialist for ME/CFS is an infectious disease doctor, knowledgeable in ME/CFS. My second choice would be a rheumatologist. This reaon for seeing this type of specialist is that that can see the bigger picture since they're familiar with the illness. Otherwise, you get a piecemeal approach that is not that effective--a different doctor for every body part.
paul75665 jackie00198
Posted
Hi Jackie
Thank you for your kind words and insight into CFS/ME, it does help me understand it a bit better, and help give me some reassurance concerning the more worrying symptoms I experience.
As for the specialists I've been seeing, the diagnosis of CFS/ME was given to me by my Gastroenterologist, and confirmed by my doctor. I am to see a Neurologist on Thursday, and was referred by my doctor to him, due to the vision problems I've been getting, tunnel, blurred vision and eye spasms, and getting a lot more headaches recently. My symptoms all started, and got gradually worse from getting a back injury at work one day, and I'm presuming my doctor wants to eliminate any nerve damage. I had upper and lower back X-Rays when I got the injury, but these, from what I have researched, aren't useful in seeing nerve damage, hence seeing a Neurologist. As you said, I'm getting referred to different doctors that specialise in certain body areas, so I do feel I have been lacking in info and advice, which doesn't help my state of mind. How would I go about seeing an infectious disease doctor or rheumatologist? Would this need to be done by a referral from my doctor?
I've got some CBT lined up now, to try and help with the anxiety issues I have, I've also been told by the advisor I spoke to regarding CBT to get my doctor to refer me to a local CFS/ME clinic (I say local, its still 30+ miles away from me). This clinic should be more useful to me, specialising in all aspects of CFS/ME, so I'll be hopefully getting a referral for that.
One last thing relating to CFS/ME symptoms and pain I need some advice on if thats ok? I know its normal for pains to occur randomly anywhere over the body, but is it normal to experience pain in a specific area for a prolonged period of time. A few weeks back I went to bed one night, with no significant problems, but when I woke up I was experiencing severe, sharp, achy type pain that seemed to come from my right, lower shoulder area, but more internal, and spread all over the top right of my back, shoulder, neck area. The pain hasn't gone away even now, and it seems to alternate from easing a bit back to severe pain and visa versa, and its affecting mobility of my right side, especially top of arm, right shoulder and right side of neck. I spoke to the doctor about this a week and a half ago and he thought I might have pinched a nerve, but didn't seem too worried about it. I was just wondering if it was normal for CFS/ME to affect areas of the body for prolonged periods of time?
Thank you again for your help and advice, I do appreciate it, and any other advice or thoughts are greatly welcomed.
jackie00198 paul75665
Posted
paul75665 jackie00198
Posted
Thanks for the reply Jackie
So the pain in the back could be one or the other, or maybe even both. It'll definitely be something to mention to the Neurologist when I see him this week anyway. I do have a curved spine as well, and it curves out to the right of me, the same side most of the pain is located. It's curved enough to make my right rib cage poke out slightly more than my left, its quite odd looking down at my abdomen and seeing one side further out than the other. Not sure whether this could contribute to the pain, but again something else to mention.
Thank you again for your thoughts, very informative and useful, and I do appreciate them.