High blood pressure with me/cfs?

[pdgoldinc]

Is it possible to have high blood pressure with me/cfs? My BP was 250/150 at my last doctor visit. 5 minutes later it read 200/136. My doctor has no clue what's wrong with me and I need to find out on my own.

 

[Jonathan Edwards]

I think the answer is no. That blood pressure is not due to ME/CFS. Your doctor is obliged to investigate it. A level that high is a serious health risk. It should be investigated and treated immediately. There is no way you can find out the cause on your own.

 

[Countrygirl]

Is it possible to have high blood pressure with me/cfs? My BP was 250/150 at my last doctor visit. 5 minutes later it read 200/136. My doctor has no clue what's wrong with me and I need to find out on my own.

After 30 years of severe hypotension with ME, I suddenly developed hypertension and have recorded readings of 230/130..........still not as dire as yours though. It has landed me in the stroke ward on three occasions and left some permanent damage, unfortunately. The real problem and the most damaging I have found is the speed of the change in BP. It is as though the brain cannot accommodate to such very rapid hikes. I remember reading some Australian research that would be about three years old now (sorry I didn't keep a record of it) that suggested that in ME the brain's protective ability to respond to sudden BP changes is impaired.

POTs we know is quite common in our patient population, but I have read that a minority have hypertensive POTS. I wonder if this is the link to ME? I am curious to know whether others who have had this illness for decades have also experienced this reversal.

I discussed this with Professor Pinching before he retired. He suggested that it was an autonomic problem and that, in his opinion, the sudden very high hikes were the result of 'overcompensation' and that treating it with BP meds would exacerbate it. My GP, however, knows of no other way to treat it and knows little about ME. My BP is still very labile and rapidly doubles as does the pulse, especially if on my feet, despite trying the usual hypertensive meds. I have not found a way of controlling it apart from lying flat.

I will be very interested to know if your doctor finds a way of controlling it, although yours may not be ME-related, of course.

I wish you well and hope the problem is brought under control very soon.

 

[CFS_for_19_years]

Is it possible to have high blood pressure with me/cfs? My BP was 250/150 at my last doctor visit. 5 minutes later it read 200/136. My doctor has no clue what's wrong with me and I need to find out on my own.

I think the answer is no. That blood pressure is not due to ME/CFS. Your doctor is obliged to investigate it. A level that high is a serious health risk. It should be investigated and treated immediately. There is no way you can find out the cause on your own.

@pdgoldinc, welcome to PR. Since you're new, I didn't know if you're aware that Jonathan Edwards is a medical doctor. His advice is very much appreciated here.

 

[SOC]

Is it possible to have high blood pressure with me/cfs? My BP was 250/150 at my last doctor visit. 5 minutes later it read 200/136. My doctor has no clue what's wrong with me and I need to find out on my own.

What the bleep kind of doctor is that? Those are some pretty serious numbers for a doctor to just dismiss. Find yourself another doctor, preferably a cardiologist. That kind of high blood pressure could easily be something entirely separate from ME and needs to be checked into ASAP.

 

[halcyon]

Is it possible to have high blood pressure with me/cfs? My BP was 250/150 at my last doctor visit. 5 minutes later it read 200/136. My doctor has no clue what's wrong with me and I need to find out on my own.

Do you have any symptoms of orthostatic tachycardia? Certain types of POTS can present with hypertension. Are you able to measure your BP at home while at rest?

 

[Forbin]

Yes, I would definitely seek out a good cardiologist. When I developed unusually high blood pressure at age 30, after seven years with ME/CFS, I began to see a cardiologist who also specialized in internal medicine. He's been my primary physician ever since. I'm currently on an ACE inhibitor which controls my pressure well


Dr. Bell has written an article on blood volume in ME/CFS that's on Health Rising.
http://www.cortjohnson.org/forums/r...blood-volume-in-chronic-fatigue-syndrome.234/

In it he says of one patient:

He had ‘hypovolemic hypertension,’ meaning that because his blood volume was low, the muscles around his arteries had clamped down causing it to look like standard ‘too much blood’ hypertension.

Dr. Bell's hypothesis is that something (perhaps autoimmunity) is decreasing blood vessel diameter throughout the body and the result is decreased blood volume (I assume due to less available space).

- - -​

This may be a meaningless anecdote, but the size of the blood vessels in my wrists changes quite a bit. When they are big, my blood pressure is normal, when they become narrow (sometimes to the point of not being visible) my blood pressure is higher. Two things that seem to be connected to my pressure are temperature and not having eaten in a while. When I'm cold, my blood pressure will be higher. My blood pressure also rises if I have gone without food for more than a few hours. Once I eat or drink something, my blood pressure drops significantly.

All this might be coincidence, but the drop in blood pressure from eating/drinking sounds like the liquids at least might be temporarily increasing blood volume.

[I also suspect that ME patients may suffer from a considerable "white coat effect" when having their blood pressure measured in a doctor's office. I wouldn't be surprised that the experiences of ME patients leads to anxiety around doctors, and perhaps that effect is enhanced by the autonomic dysfunction seen in ME/CFS ]

 

[pdgoldinc]

Forbin, thanks for pointing all this out to me. I very much appreciate it.

 

[pdgoldinc]

halcyon, I don't have any symptoms of orthostatic tachycardia. I don't have POTS either. I do have a BP meter at home, I am having problems with my BP for at least 35 years, it is usually over 200/the lower number DIA is usually quite high too. Then a few times, my pressure was so low that I had to go to the hospital for a couple of days to be stabilized. I just took the reading now: 166/84, HR 117. I will start to monitor it regularly.

 

[pdgoldinc]

SOC, you are absolutely right. I have an appointment Tuesday, I will have a long talk with her and set it straight.

 

[pdgoldinc]

CFS_for_19_years, thanks for pointing this out to me. I had a feeling....

 

[pdgoldinc]

Thanks for your reply, Countrygirl. I can see, I have a lot to learn here. Actually, I have not been diagnosed yet. I have been complaining for close to two years that I can't get up in the morning and sleep all day. It got really bad about a year ago and currently, I can sleep for a good 18-20 hours a day, all week long. I was always told that I was under a lot of pressure due to a rear-end car accident in 2009 which left me officially disabled and with permanent back/neck/shoulder pain. I was for over a year on Morphine and thanks to my husband, my other doctor stopped prescribing it to me.
I have argued with my primary doctor, that it is not normal to be that tired all the time, but she seems to think in my case it is normal. I have this particular one since 2007 or 2008 and the office knows me actually quite well. They did blood tests over the past year and nothing is out of order that I know of, they also did a EBV test, which was negative. (I had the EBV in about 1989 in California and was spending close to 6 month sleeping) I had tried all kinds of herbs and different medicines, nothing helped at that time. I am having an "always tired" problem ever since, but for about a year now it has gotten out of hand. I finally went on the Internet searching for any illnesses with excessive fatigue and that's when I came across CFE/ME and some others. I filled out a self-test for CFE/ME and I am having 42 out of 46 symptoms. A couple of weeks ago I told my doctor that I believe I'm having CFE/ME and she looked at me like I was crazy. I will bring some literature along this Tuesday for my visit with a list of tests she should perform to hopefully make a diagnosis. I think everything else is already ruled out.
I am very grateful for this forum here, and I like to thank everybody who responded to my post. All is very helpful to me as I am new on this site. I will get to the bottom of my blood pressure problems and keep everybody posted on what causes it and if I end up with the diagnosis having CFE/ME, and what medications I am given.

 

[pdgoldinc]

Thanks for your advice Mr. Edwards, it's about time that I take my BP seriously.

 

[CFS_for_19_years]

The visit you're having might have to focus on getting your BP under control, and there may not be enough time left to spend on getting a diagnosis of ME/CFS. It's good to take along some reading about ME/CFS so that you can leave it with her.

I've had BP problems for the last 3 years and I've found it very useful to keep track of all medications I take on a daily basis in chart form, plus I keep a record of BP readings and heart rate. Your doctor should tell you when and how often to take your BP/heart rate, and I recommend keeping a record of those readings.

My BP recently worsened with no apparent reason and I was able to show how I was stable at a particular dose for an extended time before that happened. I wouldn't have been able to track it without records.

Hope your visit goes well.

 

[Jonathan Edwards]

I would strongly advise pdgoldinc to go to the doctor and get the BP sorted and say nothing about ME at all. It is extremely unlikely that the BP has anything to do with ME since hypertension is a hundred times more common than ME and ME is not documented as a cause of hypertension. As members often point out any reference to ME often makes a doctor think they can ignore everything and move on to the next patient.

Once the risk of stroke and heart failure from hypertension has been dealt with then may be the time to consider whether ME is an appropriate diagnosis.

 

[Marky90]

As suggested, you need a thorough heart check! Asap. I have seen some members report some very high BP-readingsin connection with their ME, but this is by far the highest i have seen,and should be of immediate concern.

 

[pdgoldinc]

Thank you so much for all the responses. It helps to hear from you! My doctor visit did not go well at all. My husband dragged me out of bed, I usually sleep most of the day and just can't get up. I brought some literature along, she looked at the list of tests and gave me a script. I then asked her if I could get something so I don't sleep all day long, it did not have to be a narcotic. I also told her that when I take my BP at home, it's usually around 180/80. I must have white coat syndrome. Also I asked her for a referral. She told me that I could do this on my own. Another time, I left the office crying.

 

[MeSci]

What is your prescription for?

Whilst I agree with Professor Edwards about not mentioning ME to the doctor, my answer to your first question "Is it possible to have high blood pressure with me/cfs?" is yes, although it seems to be a minority of us.

I estimate that I developed ME in 1995. Hypertension was found by chance in the mid-2000s - about 200/100 - and I was unfortunately put on an ACE inhibitor, which was almost-certainly the cause of the severe hyponatraemia which cause me additional problems, including a fracture, collapse and a hospital stay. I would advise checking your blood and urine sodium before trying an ACE inhibitor, to make sure that you don't have pre-existing natriuresis - sodium loss in urine.

I came off the ACE inhibitor when I realised that it was adversely affecting me, and changed to a low-dose beta blocker. Neither of these drugs has been very effective at controlling my bp. It fluctuates wildly from minute to minute, even at home. I wish that doctors would focus on finding the cause of things instead of just throwing drugs at them.

 

[jimells]

About seven years ago I had a hypertensive crisis with numbers similar to @pdgoldinc It was accompanied by an unbearable ice-pick headache - absolutely the worst pain I have endured so far. The doctor had no idea what was wrong but he did prescribe a combo BP medication. He "treated" the headache with a CT scan which showed nothing. I got nothing for the pain.

Since I had recently started Cymbalta I asked if it could cause my symptoms. He insisted it could not, but fortunately I did not believe him so I immediately reduced the dose, and that stopped the headache. When I checked the manufacturer's professional information sheet for Cymbalta, extreme hypertension was listed as a "rare" adverse effect.

My BP is always high at any doctor's office. I used to think it was just the "white coat syndrome", but now I think it's a combination of "white coat syndrome" plus hyperadrenergic POTS, which is made much worse by having to sit up in the exam room for a long time while waiting for the doctor.

Like other folks have mentioned, my pulse and BP tend to be all over the place. I have found a low-dose beta blocker (I use atenolol) to be very helpful in controlling the tachycardia and hyperadrenergic symptoms like feeling hot and having cold and clammy hands and feet at the same time.

I have found that POTS is a more "acceptable" illness to present with. More doctors seem to understand that POTS is "real" and treatable. The psychobabblers have not been as successful in convincing doctors that POTS is a "psychosomatic" illness perpetuated by "false illness beliefs".

 

[alex3619]

High BP is quite common in ME patients. Why, we don't know. There are some theories. BP as high as listed requires urgent medical attention. If one doctor will not help you might need to find another.

High BP can coexist with orthostatic intolerance. I wonder if, in some cases, this is some kind of compensating mechanism. Orthostatic intolerance is common in ME.

However high BP is indeed very common, though typically not this high.