Hi everybody. i'm new to this ME forum. like most ppl with ME/CFS, it's a long story. i'll therefore, endeavor to make it as brief as possible.
i have had ME for some time. 3/5 yrs ago, I started having severe chest pain, collapses, headaches, swallowing difficulties (lost 1/5 stone in weight) & a number of other symptoms.
following the first collapse, my B/P dropped from a normal 137/70 to stay hovering around 100/60. it goes up when i go to the GP's & appears within normal parameters. the problem is my body reacts strongly to any kind of environmental change, so a small drop in B/P is felt v. strongly in my body & reacts accordingly.
fast- forward to this year. i'did eventually got referred to a Cardiologist, who did a 'Tilt Table' (TT) test in July 2015. that was to rule out POTs. there was no significant drop in B/P during this test. however, i had to ask to have the test stopped after approx. 12 mns as i felt so - awful nauseous & as if i'd pass out. coz the results of the TT was normal, i was discharged from the cardiology dept. back to the GP. i didn't realize this until i spoke to my GP.
I had been managing the low (for me) B/P by drinking 3-4 litres of fluid daily. however, after a series of repeated UTI's recently, that responded only partially to antibiotics, i drooped the fluid intake to reduce bladder irritation. subsequently, the B/P dropped and all the chest pain/breathlessness/ hemi cranial/occipital headaches have returned with full force, possibly worse. it feels like i've had a small stroke down my left side.
so, i'm wondering if anybody had a similar experience & what they did to help remedy the problem. my GP, either doesn't believe me or thinks i'm a hypochondriac & treats me accordingly - but in anice patronizingly manner. i've done the rounds of the Docs in the practice and there seems to be a culture of not taking ME/CFS seriously. in fact one of the GP's said it was 'Psychosomatic'. following that, i had a Mitochondria function test done. i had a bunch of abnormalities that i have tried to correct. the Mito. test said i was in Mitochondrial failure i.e. had 'cardiomyopathy'.
i was on b12 which helped enormously, but i seem to have developed an auto-immune response to same, so have had to stop supplementation.
i'd be most grateful for any suggestions. i'm at the end of my tether & have to house move shortly.
thanks in advance.
H
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Hidihi
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Hi Hidihi- I have fibro and me/CFS so saw your post on other forum too. This forum is definitely quieter than fibro. I too suffer from chest pains. Don't know if they are affiliated to costochronitis or some heart issues but am having an Mri Next week to rule out blockage??? Or whatever??? I often get numbness and pain on left side down arm and round chest. I have had three abnormal ecg's lately but doc unsure if that's down to medication side effects. I take duloxetine for fibro - could your pains be side effects of something your taking? Not tried b12 but take b complex and cod liver oil along with vit d supplements. Magnesium Sulphate (Epsom salts) in bath at night and health salts at night as they contain magnesium to help me sleep. I faired better when I cut out dairy and gluten from diet but have allowed that to lapse. I'm about to attempt it again but hard when not celiac. Still feel v exhausted most days and struggle when I am not rigid with routine, with sleeping patterns. I'll post on here re mri results. Let me know how you get on too Jax - ps it is not in your head btw!! It is very real! Doctors pull that one when they don't have the answers!!!
thank u for that Jax. that would be good to see MRI results. is your chest pain felt sided & do u have breathlessness with it? i've done all the dietary stuff ? btw, i only sleep 2 of the 24 hours i.e. 9-11 am?
Hi Catherine, yesect sided. Its so difficult to know whether i should press the panic button or just ignore ! Ive not dropped down dead yey so thats a plus (joke!) but tbe symptoms are similar to those that you should dial 999. Been hiven spray and told if it works fine - if not it will give you a sore head!!!! I suppose tbats how tbey do trials. Not used it. Not too much breathlessness. More pain and tingling. Need to watch my anxiety at that time as its scary!! Hope you get help soon! Jax
For what its worth, prior to being diagnosed with ME I went through a period of severe chest pain. I ended up in the cardiac unit one morning, (had planned on ignoring it like the chest pain before but it was shooting into my jaw and down my arm) getting bloods and the results came back that I had increased cardiac enzymes above a certain level which was indicative of heart failure/heart attack. After waiting for 3 hours the bloods were repeated and all was normal.
This happened 3 times and I had my heart scanned and did a treadmill test that had to be stopped because of chest pain which was helped by GTN spray.
So long story short, despite the chest pain, and despite the fact that my blood results showed that I was appearing to have heart problems there was nothing major wrong and left at that!
I suppose what I am trying to say is maybe your body is reacting to the ME, (I spoke with a leading Dr in ME in the UK and he says it is due to a viral infection).
I would imagine that the Dr would know your BP increases when meeting them as it is commonly called 'white coat syndrome'
raffs: thank u for that. re: the B/P raise @ GP's etc.. i think they use that one to suite whatever outcome they want to give u. i had a 24 hr recording and the GP commented that my b/p was v. low.
Hi Raffs. your symptom presentation is quite interesting. were u given any advice on heart disease prevention. for me, the chest pain has been persistent x 3/5 yrs with the pain referred to shoulder tip, down the left arm and up the side of my neck/face - a fairly typical cardiac picture. however, GTN just gave me a headache.
the 24 hour B/P record showed v. low B/P. yes, there are drugs to help low B/P. it's just a matter of getting someone to take me or it seriously & prescribe them. the chest pain is exhausting
It does all sound pretty distressing. First thing I must say is I am not medically trained in any way and anything I say is purely from the point of view of a fellow sufferer, so please don't take anything medical or scientific sounding that I say as gospel. Check first before you form your opinion or act. Secondly, even as a sufferer, your symptoms aren't quite like mine so I can't give specific advice on them.
I can't quite tell from what you say if you have been through the usual process of elimination to reach an official diagnosis of ME/CFS. Clearly from what you say something sounds wrong, a healthy person wouldn't experience symptoms like yours. Whilst they sound similar to ME/CFS they don't quite fit the pattern of symptoms that I am aware of.
I recently listened to as many of the talks as I could on the online Abundant Energy Summit hosted by Niki Gratrix. There were many researchers and doctors on there that work in the chronic fatigue field, one of which was Dr Sarah Myhill, who is one of the few UK specialists in the field and well respected. She gave (for my money) one of the best talks of the summit. In simple terms she likens the body to a car, energy in has to exceed energy out or the "car" stops. Food is our fuel equivalent. Our mitochondria are how we burn that energy as they take fuel from the blood stream and burn in oxygen to produce ATP (our body's energy). Thyroid glands determine how fast mitochondria go so they equate to our accelerator pedal. Adrenal glands equate to our gearbox with the use of hormones like cortisol and adrenalin. Sleep is what services our "car".
From that description there is clearly a link between mitochondria and fatigue. But the other thing I picked up from the summit is that there are many conditions and illnesses that involve fatigue. It seems that the modern thinking is that they can all pretty much be described as falling under one umbrella of what they described as "an allergy to the toxicity of modern life". ME/CFS is just one of them. Clearly your issues relate to mitochondria and presumably fatigue, but one crucial difference with ME/CFS is post exertional malaise. In other words there is a delayed affect in fatigue after exertion by anything as much as two or three days. Dr Myhills description of the science of why is too long to go into here.
She also said there are broadly 2 important reasons why mitochondria underfunction. The first is they are deficient in raw materials so she recommends taking supplements, magnesium, Co-enzyme Q10, vit B3, acetyl-l-carinitine and D-ribase (not sure if I spelt the last two right). Or the second reason is that they can be slowed because they are blocked by things that stop the mitochondrias ability to make ATP like environmental toxins (organo phosphates) or things stuck on the mitochondrial membrane, one major source of which is an inflammatory gut.
Her recommendation to assist mitochondrial function is basically a good healthy diet (organic if poss), the supplements to get the right hormonal balance, pacing and sleep. All good things for anyone with fatigue, whatever the underlying cause of the fatigue.
I can see why your GP sent you to the cardiologist because of the blood pressure issues and the chest pain which to my knowledge are not commonly part of ME/CFS, though of course as I say I'm not a medical person. And of course many people with the condition do have other illnesses and conditions as well.
I would suggest you keep an open mind as to exactly what your symptoms are indicating and do as much investigation as you can, particularly into the whole group of "allergy to modern life" illnesses. If you can, research into Dr Myhills work doctormyhill.co.uk/ . But try other avenues too like Dr Anthony Hayes (Harley Street) who works with adrenal function issues. Or Dr Gillian Crowther who gave a talk on how to optimise mitochondrial function from a biophysical perspective.
If you can't get past the unhelpfulness of all the GPs in your practice I would suggest changing your practice altogether. If you are moving house perhaps this would be the perfect opportunity to do that.
But above all try not to worry as stress is one of the big factors in many of these illnesses.
Good luck and I hope you get somewhere with your investigations or someone can give you some sort of specific help. Be kind to yourself and get as much rest as you can.
thank you for that taking the time to write that informative post Margaret. it was Dr Myhill that diagnosed 'Cardiomyopathy' &attributed the collapses to POT's from the blood tests completed. she works with the DR Sinatra's Protocol, adds b12 supplementation to it, to which responded well, until i developed a kind of auto-immune response to. . she identified many anomalies within the my cell activity i.e. blocked cell calls & deficient nutrients due to a variety of reasons. i'm supplementing with the Sinatra Protocol which is helping a little. i've got all the standard ME/CFS symptoms. post exertion fatigue, a huge amount of sensitivities to food that set off my IBS, light/noise problems. etc. etc.. been diagnosed & have done one of the ME/CFS management courses. i think, if i could get my b/p back back up to to normal, the chest pain would be more manageable. when i have the odd cup of coffee my B/P goes up a bit and the chest pain & breathlessness reduces somewhat. Dr Sinatra understands ME/CFS as heart failure, held in check the fatigue.
I didn't realise there was any such connection with heart issues. But I guess it's not surprising given that the condition has such an impact on all the body's systems.
I know what you mean about the coffee because I have the opposite problem in that these days it makes my heart race as my blood pressure is usually normal. I suppose that is partly why I don't correlate ME/CFS with heart problems because it's one of the few areas I don't tend to have problems with. Like you I have gut problems and all sorts of sensitivities, particularly to noise or too much activity around me. When I saw the specialist at Frenchay in Bristol he said mine was a clear cut classic case of ME/CFS and that I was displaying all 12 of the classic symptoms, which apparently is rare, but heart problems isn't one of mine. But nothing surprises me any more about this torturous condition.
Although saying that, thinking back I did have an episode of two bouts each of both B12 and iron deficiency anaemia a few years before my ME/CFS diagnosis. Like most people I had been developing the condition for nigh on 15 years before I was actually diagnosed, so perhaps it was part of it after all. I too found the B12 injections very helpful as they definitely got rid of the dizziness, shortness of breath and tingly sensations. I'm sorry you don't seem to be able to tolerate them as they do help.
Good luck with the Sinatra Protocol, that is also one of the things mentioned on the summit by a few of the speakers. I'd be interested to know how you get on with it if you feel up to reposting any info.
I wish the NHS would offer mitochondria testing. Even though I am lucky that my GP is one of the few understanding and supportive ones, there is still only a limited amount of investigations and tests that the NHS will fund. And like many others this awful condition has taken away my ability to work so I can't afford to go down the private route. I even had to fight and get myself a referral for a CBT course for those with the condition. It starts on Thursday so fingers crossed.
I'm sorry I couldn't be more help to you. But I wish you well. Take care of yourself.
Hi Margaret. thank you for that considered response once more. and apologies for delay in getting back to you. been under a lot of stress and dealing with the 'payback' consequences of same.
re: Dr myhill's regime: i've been on it for over a year now. it was moderately helpful in the beginning. presently, i notice a mild amelioration in pain.
you mentioned you were b12 deficient prior to the onset of ME/CFS. i'm now convinced that it was low b12 that caused me to succumb to an infection in the first place. it runs in the family and i should have cottoned on. and i'm a long time vegan/veggie on ant acids.
Re: heart symptoms & ME/CFS. yes, there is a correlation. have a google of ''ME research UK''. in the 2012 Autumn issue 16 of their magazine - ''Breakthrough'' there's a research based article explaining the connection. Prof Julia Newton of & her research team @ Newcastle university (Health & Ageing dept) have completed a number of research projects in this area. there's also an excellent article in the Spring 2011 issue 13 of ''Breakthrough''. i'm sure you can get them on line.
how is your CBT going so far? and how are you feeling generally.
I'm sorry to hear of your symptoms. Like you, I also suffered from heart pains all through my childhood and early adult years. It wasn't until I was in my late 40's when I discovered something that would eliminate the pains from my mitral valve prolapse ailment. If you're interested in reading my story, feel free to check out my bio. There is still hope for cardiac problems.
All you have to do is click on the light blue davejonsn word in my last post to you and it will take you right to my bio. The davejonsn word is right next to the smiley (which is just as bald as I am, lol) above Hello H.
Guess what, you learn something new every day with this condition don't you? I too have had a fairly stressful time recently and guess what symptoms I have discovered over the past few weeks. The dizziness and light headedness has been getting worse and I've had terrible indegestion and pains in the back of my chest. It was so bad when I was hanging the washing out the other day I took my blood pressure on our home machine. Normally I'm around the usual 120/80 but I took it 3 times in a row, several minutes apart and each time it was about 90-100 over 53-62. There's ironic for you! And yes I have done further research recently and discovered more about it so apologies for my original comments. There is just so much to this flipping condition and not everyone reacts the same so it's always a learning process. I'm going to the doctors today for a regular catch up so I guess I'll have to mention it to her.
I had to drop out the CBT course because the travelling was too much and my husband had to have an emergency angiogram on the second week and we went to look after my mother in law who had an emergency cancer operation on the third week. All in all it was just too much to cope with so I cancelled the morning of the second week. To be honest I'm not sure it's the right thing for me anyway. The approach seems to be just think your way out of the pain. Yes it can be helpful to learn relaxation techniques but the pain of ME/CFS is there for a reason and ignore it at your peril. Maybe I'll try pushing for a pacing course instead, sounds a bit more sensible.
All in all I'm feeling pretty ropey these days so I'll let you know more when I've seen the doctor. Hope things pick up for you too.
Hi Margaret. thank you for that input. so sorry to hear you've had such a lot on your plate recently - exactly what you don't need when ones trying to optimally manage the ME/CFS.
interesting change in your B/P. low B/P seems a fairly common phenomenon with many ppl with the condition. consequently the blood supply barely get to the organs. i spent most of a year lying flat as every time i stood or sat up, my B/P dropped further and i'd collapse. it's improved since then.
btw, have you done one of the ME/CFS management programmes? i'm not a great fan of CBT myself. it's very prescriptive with a 'one size fits all' approach. all our pains etc. express themselves v. individually.
No I haven't been on any other sort of course. When I was first diagnosed I was referred to the specialist clinic at Frenchay in Bristol. But as I live near Cheltenham that's 40 miles away and just too far to travel. I had one appointment with the OT guy and several follow up phone calls but that was it. They did run some sort of course which I guess is what you are referring to but as I say we couldn't manage the travel. And as my husbands health is even worse now and he is the only bread winner, the poor man has enough on his plate as it is so I'm not going to ask him to be my chauffeur for that. Hopefully something will be available a bit closer now as that was 3 years ago.
sorry to hear hubby continues to have a difficult time. hope he recovers fully and is back on his feet soon.
don't know how far you are from the Royal Bath Spa hospital. they run an ME/CFS 6-8 week management course, consisting of 'Pace', group CBT etc.
they explore a number of common symptoms/subjects like sleep problems etc. the travelling is always a killer. one's exhausted by the time they arrive there, so engagement with the program is diminished. and it can take 'weeks' of payback to regain ones baseline. don't mean to be negative, it's just that it's such an unforgiving condition.
oh dear. i guess that means that you have to learn as you go then. i'm sure you're aware of the ME association, Action for ME and of course ME Research. i think Action for ME have a help line. is there any support group near you. they're in most towns. btw, is your GP knowledgeable/supportive?
My GP is supportive and seems quite good at the standard advice but as I'm sure you are aware there is not much that the NHS provides for us so she is very limited in what she is able to do. I seem to have reached the limit though as far as tests that she will push for goes.
Though having said that when I saw her yesterday she did confirm allodynia and orthostatic hypertension and fibromyalgia now, just to add to the list. Means I can also add Tramadol to the list too!
I also asked her about a pacing course but she just said to ring the clinic I went to in Bristol, not that she would refer me. I haven't spoken to them for a couple of years so I'm not sure if they will take the call without a referral but I'll give it a go and see if they can offer anything closer to home. Might be interesting because I'm not even sure the one in Bristol is in Frenchay hospital anymore.
I'm not aware of any support groups in my area but do you think it would be worth checking the Action for ME or one of the other websites, do they contain that sort of info.
Thanks
Margaret
Hi Hidihi,
Not sure if you are still on here but thought I'd update you with the results of my MRI Heart scan. They have found I have 50% hypertrophy in my left ventricle which on reading myself can be related to over exerting when ATP depleted. Unfortunately the cardiologist letter has not arrived yet as they apparently have an 8 week backlog in the department so GP gave me the result with no explanation of why this has happened given all other parts of heart are healthy and also no info on follow up or treatment. I am kind of freaking out as stated in post I made today as all I have to go on is what I've googled - some responses have come back in relation to sudden cardiac arrest and heart failure. Chased up the cardiologist secretary so should get results next week. I too have embarked on dr myhills recovery plan but am really disappointed she is not taking on any more patients so I'm not being monitored. On reading your posts above I am going to ask my own doc for mg and b12 injections. I wonder what her reaction will be 😳. Here's hoping she is open minded!! Jax ☺️
Hi Jax. thank you for updating us. most thoughtful.
so sorry to hear there's little help available right now in respect of explaining the causes of & managing this new heart condition. to be quite honest, i've found that apart from the 'everyday' things GP's tend to be (generally speaking) very ill informed. until the recent reforms, GP's were just 'Gate Keepers' - writing sick notes & prescriptions & referring on anything out of the 'ordinary' to Hospital Consultants. now, coz they pay out of their budgets for referrals and medicines they tend not to readily refer ppl onwards.
Jax. when you get the letter from the Cardiologist, it should give, at the very least, a broad brush explanation of the condition and how to mange it. it should say whether you need another appointment with the consultant or not. i'd make a double appointment with the GP, take the letter along and ask for the condition to be explained in detail to you, especially, if the Cardiologist's letter does not recommend another Consultant appointment.
in respect of Dr Myhill, i think, but am not sure, that she still does the Mitochondrial test. it's a 3 part diagnostic test & valuable in identifying the anomalies & degree of malfunction of the Mito. unfortunately, she doesn't SEE new patients anymore, but has offered me the opportunity of e-mail consultations. i'd check with the receptionist. the Sinatra protocol helped me a little, especially the CoQ10. however, it wasn't until i started the b12 injections that the chest pain measurably decreased alongside other symptoms. i now self manage. it's a big learning curve as ppl are so individual in their b12 requirements and responses. b12 needs tend to depend on what's happening, physically/mentally/emotionally in one's. it's different with everyone. stress markedly depletes my b12.
i hope u get that letter pronto and get an explanation. would love to hear how it goes fro you. btw, i had to make a lot of noise to get my GP to listen & hear.
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