Been poorly for most of the year, (visual issues, bad bowels, strong pulse) CFS or something else?
Posted , 6 users are following.
Hi, I was wondering if anybody on here could help me out, I have been going through a range of symptoms for most of the year and I am hoping that by posting on here that somebody might come forward that has had a similar experience. Sorry in advance for the lengthy post.
Around the end of February or early March I started getting visual issues, (these issues are hard to describe as it is not a dizziness or light headedness. It is almost like I am not really in the room; it’s really hard to explain without somebody seeing it. There is also an element of light sensitivity with this also).
This was the first symptom that I presented with that I am aware of. Since then it has snowballed. My symptoms now include headaches (a lot), altered bowel habits (possible IBS), random aches around different areas of my body, muscle twitches, chest pains, foamy/oily urine, a lot of pressure in my back, neck and head, very annoying tinnitus, brain fog and fatigue (mild). The most alarming symptom to me is a constant bounding pulse. My pulse can be seen visibly on many places of my body; including my neck, abdomen, groin, wrists etc. (Aorta, carotid etc). It is so powerful that it moves my body and head and is most notable at night time. The pulse does not elevate too much like with tachycardia issues, my resting bpm is low 50’s it is just very strong. If you google strong pulse along with the other symptoms you get results ranging from mild to very bad. However I have had numerous testing through the NHS, which has all come back okay. I have also had some strange symptoms such possible alcohol intolerance and I have to limit my screen time as the reading makes my headaches worse.
At this point I have seen ENT (received a head MRI), a gastroenterologist (abdominal ultrasound and colonoscopy), two neurologists, a cardiologists (ecg stress test, echo) and an immunologist. I have had numerous blood tests including full blood counts, thyroid function, hba1c (Diabetes) etc which have all come back normal.
The Doctors have no answers at present, although ME/CFS has been suggested. I am unsure of this myself as fatigue is not my biggest symptom.
It is also worth noting that prior to this; I had a bad case of the flu in Dec/Jan and then a stomach bug like illness earlier in in Feb. I seemed to recover from these episodes however, and then the other symptoms started in earnest after this.
I am 27 male and previous to this I was quite athletic. If anybody has had a similar experience to me, please could you let me know,Joe as I am struggling to deal with all this, and the professionals do not seem to have many answers at the moment. Thanks in advance 😃!!!
0 likes, 15 replies
bob1970 Jerome13
Posted
The NHS are generally terrible when it comes to ME/CFS but the least they should do is send you to a specialist (what they class as a specialist anyway) for an official diagnosis. I believe most areas should have a CFS clinic of some kind. If you do go and get a diagnosis leave it at that, don't do any of the nonsense they call treatment without researching it first and knowing what you are getting into.
Many of the symptoms you have described have been seen in CFS. I have a similar issue with heartbeats being so strong I rock sometimes and also I can feel all the missed beats. Low fatigue seems unusual though, especially what is called PEM (post exertional malaise) which you didn't mention. This is where you experience a crash or an increase in fatigue and symptoms anything up to a day or 2 (sometimes longer) after any exertion.
ME/CFS is still in a bad place as apart from poor funding and research, so many people get a diagnosis without any of us really knowing what is going on. I've seen people on Facebook pages talk about going for a bike ride and then feeling a bit tired afterwards and they got a diagnosis (or often self diagnosed which causes even more stigma). I know there are various levels from mild downwards but when I see that sort of thing my hopes shrink of anyone in authority able to change the way ME is perceived taking it seriously.
Anyway sorry about the rant. Good luck and the best thing is to do research, match as many symptoms as you can and see if you get diagnosed. I would look into PEM though as it is generally a key symptom.
Jerome13 bob1970
Posted
Hi, thanks for the reply and a rant is usually better than a short one 😃.
I have researched a slight amount into ME/CFS , Fibronand POTs over the last few weeks and found that most of my symptoms are consistant, however no tachycardia or missed beats for me and, like you say, fatigue is not my biggest symptom.
It's more like this; I could go to the gym now as I have enough energy however tonight or tomorrow I would feel like I have a bad cold. Headaches, tinnitus and the pulse are often worse after exercising (possible PEM?).
I am also concerned of being misdiagnosed with ME/CFS. I It's seemed to me that the nuero and immunologist suggested this diagnosis as they were unsure from the testing results.
Thanks again for replying 😃
Jerome13 bob1970
Posted
Also, I can imagine that the self-diagnoses thing grates on you a lot.
bob1970 Jerome13
Posted
Usually you get a diagnosis when they have done all of their tests and can find nothing wrong with you and your symptoms match, which isn't really a diagnosis. It's more of a chucking you in the ME box as we don't know what's wrong with you.
You are right to be concerned about a misdiagnosis. While many of us have overlapping symptoms and some that are so similar it suggests the same or similar illness, there are many more who have gone on to find they have other things. While my doctor said the tests on the NHS I had were "thorough", when I looked into it they really aren't. The only option after that though is to spend thousands to go and see an ME Doctor in Europe or the US, which some have done to some success and some who essentially wasted their money.
There are people who have mild CFS/ME and can go and exercise and what not but it's at that point, and this is my problem and not the people who exercise, where I just cannot relate as there is nothing that suggests that their fatigue is chronic in any way (although the title Chronic fatigue Syndrome doesn't cover it by a long shot anyway). If you feel lousy after exercise then it could suggest PEM but I think if you are ill in any form exercising would make you feel pretty crappy anyway afterwards.
There are a couple of official criteria for diagnosis. I would go to the ME Association website as they have a section on symptoms and diagnosis. They also have some videos but Dr Charles Shephard who is one of the few Doctors in the UK dedicated to ME. It's worth noting that to confuse things more, ME and CFS are often seen as different illnesses.
Dillboy Jerome13
Posted
Do some research on leaky gut. Im not saying that covers all your symptoms but it very well could be one of your problems.
Jerome13 Dillboy
Posted
Hi Dillboy,
I have a slight awareness of leaky gut, however a lot of GP's are dismissive of this kind of thing. I do take probiotics although I am aware that they may feed bad bacteria as well as good. Is this something that you have dealt with? I am considered visiting a functional medicine practitioner as I have heard that they deal with these kind of thing
EJO3089 Jerome13
Posted
I can completely relate Joe and sorry to hear your suffering too. I was also diagnosed with M.E. after a process of illimination with numerous other tests and having seen several specialists. blood work, mri of head due to dizziness and pressured headaches, cardiologist and echocardiogram, 48 holter test due to palpatations and missed beats, ENT, colonoscopy and endoscopy due to stomach bowel issues etc. and was finally referred to endocrinologist who specialises in M.E. and ran a clinic before finding stopped it. he was pretty certain I was showing many characteristic symptoms of m.e. I do get fatigue but I also don't have this as my main symptom which is why I've been questioning the diagnosis and wondering if that's what they've gone with as they dont have any other answers. only difference with me is i was also having period problems and was diagnosed with endometriosis in July of this year. so have two chronic conditions to try and deal with.
my ill health started after a bout of laryngitis 4 years ago...before then I very rarely stepped door inside a doctor's surgery. now I've been there more times than I care to mention. apparently it is common for m.e.to start from a bout of illness like a viral infection etc.
apart from suggesting a support group in my area and being referred to a pain management clinic to try and manage some of my symptoms (it's a long wait for referral on the nhs) i haven't really received any other guidance or advice from doctor's ..just left to try and get on with it. it has and is a struggle at times and gets me down and very frustrated and scared. Sorry to not have any magic cure for you..just wanted to let you know there's someone in a very similar position and you're not alone. I'm still trying to figure it all out myself. xx
Jerome13 EJO3089
Posted
Hi EJO3089,
Thanks for sharing, it really is helpful for me to hear that, although I am very sorry for your suffering also. It sounds like we have had a similar experience , apart from the endo (It would be pretty groundbreaking if I also got that) which must be equally as bad.
I am considering visiting a funtional medicine Doctor to present my case to him. It's pretty pricey but I'm running out of options.
One NHS Doctor alluded that it could all be pretty much in my head , so that did me no favours at all. Unfortunately it just seems to take a long time to get a definite diagnosis on these issues, it's hard also not to let your mind wander and self diagnose with google haha.
Thanks again for sharing and I really hope that you start to feel better soon X!!!
Lee2531 Jerome13
Posted
I've been meaning to join this forum for a while (I've been lurker up until now) but seeing as what triggered Jerome's PVFS /CFS is what triggered mine, I thought this would be a good place to start.
I came down with flu bug in the middle of August which went went away on it's own. I went to football match 3 days later which looking back didn't help and was a bit unwise. Around two and half weeks later, I came down with a brief stomach bug. It was then that I started to go downhill and started feeling pretty woeful with extreme tiredness, horrible fatigue, flu like symptoms, dizziness (which came after a bout of tinnitus) but that went after a couple of weeks. I've also had the aching limbs, chest discomfort, a horrible unbalanced feeling when walking etc. I've been off work since the end of September and attempted to go back in during early November which unfortunately didn't last long. My doctor (I've seen 4 of them) said it was Post Viral and did all the usual blood work and I've also had blood work checking for viruses in my system. I've also had a mri brain scan, chest x-ray and and ecg and apart from slightly high blood pressure and slightly high cholesterol, everything came back fine. I'm also now on the waiting list to see a Neurologist.
Three months on and I'm still struggling. Some days are a bit better than others and I've been trying to pace myself and do as little as possible. The fatigue and tiredness seem to have eased now. I'm just left with a horrible malaise type feeling, which on some days can make me feel pretty vile, especially after days if I've overdone it.
My doctor has now prescribed me an anti-depressant called Citalopram which he thinks may help but I'm not keen. I wondered if anyone else has taken this or anything similar and if it's helped?
Sorry for the long rant and thanks. Hope you're all having an 'ok' day.
bob1970 Lee2531
Posted
Unfortunately most Doctors I have encountered don't believe ME is a physical disease and getting prescribed anti-depressants is a common thing a Dr will do as they think it is all in your head.
I can't speak for your Dr and they may help if you are feeling depressed but the danger is if your Dr thinks they will cure your other symptoms. I was prescribed but didn't take them. Can't really advise on this sort of thing not knowing the motives of your Dr or if you are able to manage depression and anxiety without them.
If you do some research at the ME Association website then you should get all the info you need. I think the general rule is you have to have had your symptoms for more than 6 months and there are various symptoms that are generally common amongst all patients.
Lee2531 bob1970
Posted
I'm not depressed in the slightest to be honest. Frustrated maybe but definitely not depressed. He said they might 'liven me up a bit' and help if I was anxious so I don't think he was prescribing them from a depression point of view.
I will have a look at the ME Association website, thanks.
Jerome13 Lee2531
Posted
Hi Lee2531,
Thanks for the reply, sorry to hear that you are also suffering. I have the general malaise issue definitely, I feel it more on some days than others. I was also prescribed antidepressants, however I have stayed clear of them. A lot of information I have read or listened to has warned me away from them.
My Doctor also said that my issues were post viral at first, however that was 9 months ago now (they could possibly still be I suppose).
I was also on the sick from work, however now I am reduced hours and I am concerned that my company will dock my wages unless I receive a definite diagnosis soon.
I checked out the ME association as Bob suggested and I also gave the helpline a phone call, the lady was very helpful and told me that that the majority of my symptoms line up, however I personally still feel like I lack the chronic fatigue.
I am tired all the time and I struggle to lift my head off the sofa some days, however I would I'd say this is more just being overly tired than chronic fatigue from some of the stories I have hears from ME/CFS sufferers. This is why I am sceptical of the label.
Some of the reading I have been doing alludes to ME/CFS greatly affecting the autonomic system. If this is true then that would explain a lot of our symptoms, including the pulse etc. Maybe if it is definitely ME/CFS then it has affected my central nervous system slightly differently to others and explains why some of my other symptoms are worse than the fatigue.
I'm taking this all with a pinch of salt though as these are just theories as far as I've read and I'm still not convinced this is what I have.
Sorry that was not of much help either, it's good to know that we are not alone though (as nasty as that sounds).
Lee2531 Jerome13
Posted
Hi Jerome,
Thanks for the reply and no, it was actually a big help. I did not know the ME Association had a helpline. I may give them a call at some point.
I think PEM is my main issue if anything. I had to go out last Thursday and Friday and the payback didn't hit me until Tuesday and yesterday (why yesterday I don't know), which was a bit weird and quite unpleasant The week before I went to a funeral and I felt horrible a few days later. The doctor did mention the possibility of Chronic Fatigue earlier when I saw him but like you, fatigue is not the main issue.
Like I said, the tiredness and fatigue have eased. It's more of a grogginess some days or body tiredness. The ill feeling is my main issue now. I find paracetamol helps and someone recommended a tonic called Metatone which I think has helped but I can't really tell. I don't think it's done me any harm anyway.
caroline_74621 Jerome13
Posted
hi,
by the first symptoms you discussed, about not feeling you are quite in the room, this is what i get just before a migraine aura where i have my vision temporarily impaired with fuzzy lights and light sensitivity. The headache usually appears a little later in the day.
mine all started in about may this year, after a few contract job changes. My migraines started increasing to every 2 weeks. Other times i would get a headache on one side, starting from my forehead and working its way back, and sometimes id lose my vision.
i went for all the tests and wouldnt take no for an answer as my symptoms have been coming and going for over 20 years. i did my own research then suggested m.e to my doctor who put me in touch with a specialist.
The best advice i can give is to keep a diary on the bad days. write down all your symptoms (even if you dont think they're relevant) how you felt in the morning,afternoon, evening. What activities you were doing beforehand or the day before.
I was also diagnosed with endo (which i know doesnt help you!) but after my 2nd laporoscapy it showed nothing.
i also take anti depressants (floroxitine) as i suffer with SAD. But ive found they help when i am having a bad day because i know im not low so can work on the symptoms that are causing a bad day. Dont be afraid to use anti depressants,if it helps take away one symptom then you can concentrate on the others.
And finally i also drink my aloe vera gel, it helps give my immune system a bit of a kick start which again means i can concentrate on getting better without little colds and bugs which feel a lot worse then they are.
hope this helps and you get the support you need.
Jerome13 caroline_74621
Posted
Hi Caroline,
Thanks for the reply, sorry to hear of your suffering also. It sounds like you have had to do some trial and error but hopefully you are getting there 😃.
Migraine has been suggested to me m, however my visual disturbance are every day morning until evening, like it's permanently changed. It's all been a big mystery haha. I will definitely look into the aloe vera gel this week 😃