CFS or fibro? how do I know?

[SOC]

. I think Dr David Bell used to say it shouldnt be less then 17?

I don't know for sure, but iirc for you have a PP less than 25, it suggests that you have hypovolemic shock.

@Gingergrrl43, the best thing to learn more would be to do a Google search on pulse pressure.

 

[Valentijn]

Measuring pulse pressure is done by substracting the dystolic (lower BP number) from the systolic (higher BP number).

Those with ME can have "narrowing of the pulse pressure" mine can get as low as 7 (that's enough to cause a collapse in a person). I dont know thou at what point those numbers really matter. I think Dr David Bell used to say it shouldnt be less then 17?

Normal is 40-50. 30 and under starts to feel bad, and 25 and under is an emergency when it happens due to sudden blood loss. Anything under 20 is hard to measure on most BP monitors due to the pulse being too weak to detect regularly, and most BP monitors will just give an "ERROR" message if the reading is irregular.

 

[Gingergrrl]

@taniaaust1 @SOC & @Valentijn Thank you for the info and I was not familiar with this concept at all! If I am understanding correctly, if it is under 30, you probably have low blood volume and under 25 is considered an emergency? Please correct me if I am wrong and I have not yet done a Google search.

My typical BP has the top number in the 90's and the bottom number in the 60's and is usually approximately 30 points apart. My cardiologist & endo said I have low blood volume and gave me Florinef about 2 mos ago but neither ever mentioned using this calculation as a test.

On two occasions (once with a new med that dropped my BP too much and once at the ER) my upper number was in the 80's and lower in the 50's but I think they were still 30 points apart.

The highest BP I ever have (and even with the Florinef it is rare!) is where the upper number is in the 100's and the lower number in the 70's so I guess I always tend to stay 30 points apart. Does this seem to indicate low blood volume? I have never had it 40-50 points apart which @Valentijn said was normal. Not that I am surprised in my case!

 

[Valentijn]

If I am understanding correctly, if it is under 30, you probably have low blood volume and under 25 is considered an emergency?

Under 25 is only an emergency if it's happened due to sudden blood loss - such as if in an accident. But that it's considered an emergency in those circumstances indicates it's a pretty serious thing to be happening even without bleeding all over the place

My pulse pressure gets worse after being active, after standing or sitting up too long, and after eating. Those are generally the best times to find abnormalities, I think.

 

[Sushi]

@Gingergrrl43

A low pulse pressure can come from the stresses of OI too. It is one of the things they look for (or should look for!) in a TTT. (I see I am cross posting with @Valentijn!)

For instance, mine went down to 9 on a TTT--and yes I felt like a dying fish out of water, flopping around on the flattened Tilt Table.

Sushi

 

[Gingergrrl]

Thanks to everyone for further explaining and it sounds like if 25 points apart this is only an emergency if there was an accident or cause. I checked mine today and it is still approx 30+ points apart (so I guess I am okay LOL .)

 

[taniaaust1]

Normal is 40-50. 30 and under starts to feel bad, and 25 and under is an emergency when it happens due to sudden blood loss. Anything under 20 is hard to measure on most BP monitors due to the pulse being too weak to detect regularly, and most BP monitors will just give an "ERROR" message if the reading is irregular.

ahh those ERROR messages, 90% of BP monitors dont work on me, I had to buy a very expensive top of the range one. I was blaming heart irregularity as I noticed my heart beats often are irregular with the errors. Interesting you say this can cause errors too. thanks
.....................

My pulse pressure for most of my life before getting ME (back when I was very healthy and fit) was around 20. My normal BP before ME was 80/60

..........

Last time I was in hospital, one of the experience nurses couldnt get my pulse with her fingers (I thought that was interesting).

 

[Valentijn]

Last time I was in hospital, one of the experience nurses couldnt get my pulse with her fingers (I thought that was interesting).

I had that problem too, repeatedly, especially while not taking Strattera or Yohimbe. Though most of the time they won't even make a note of low readings or the difficulty getting readings, and whoever gets the report is shocked to hear about it from me since the specialist didn't say anything about it

I think they're not trained to see low BP or pulse pressure as a problem, and maybe think that failure to get a reading means that they're incompetent n00bs. So they don't want to admit that it took 5 tries or the pulse pressure was ridiculously low when they did get it.

A bit of "moderate" exertion prior to appointments (20 minutes gardening), has typically been good enough to ensure abnormal results. Even if they never know what to make of it, at least it usually helps forestall any lectures relating to exercise and psychosomatic theories

 

[ahimsa]

The thing is I don't think it's OI because it's chronic and not just getting up but sitting too.

I thought I'd chime in with the others and say that OI can definitely be chronic. In fact, Chronic Orthostatic Intolerance is the term that Dr. Stewart uses in this medscape article - http://emedicine.medscape.com/article/902155-overview#showall

Here's an extract from that article (bolding is mine):

In chronic orthostatic intolerance, patients are ill on a day-to-day basis. Chronic orthostatic intolerance may be confused with syncope because chronic illness is sometimes punctuated by acute syncopal episodes. However, this is unusual during real life (albeit common during artificial testing environments), and the author's work suggests no increase in the incidence of syncope above that in the general population. The physician should rely on the patient's history to determine whether chronic illness is present. Thus, chronic orthostatic intolerance is defined by a history of symptoms of orthostatic intolerance present on a day-to-day basis. Defining symptoms of chronic orthostatic intolerance include dizziness in all patients, with high incidence of the following conditions:

• Altered vision (blurred, "white outs", "black outs")
• Fatigue
• Exercise intolerance (frequently post-exercise malaise)
• Nausea
• Neurocognitive deficits
• Sleep problems
• Heat [ Note: I think this is meant to be "Heat intolerance" ]
• Palpitations

A large proportion of patients also experience the following symptoms:

• Headache
• Tremulousness
• Difficulty breathing or swallowing
• Sweating
• Pallor
• Other vasomotor symptoms

These symptoms are divisible into symptoms of sympathetic activation and symptoms of reduced cerebral blood flow.

PS. I get the low pulse pressure, which causes errors with my BP monitor, all the time. I remember one post-surgery reading, while the anesthesia had not yet worn off, where the nurse insisted that I sit up for a BP reading. This was in spite of how low my BP reading was while I was lying down. She ignored everything I said about my BP and OI problems. Her eyes got very wide when she saw how low my BP was while sitting on the edge of the bed, not even standing up.

 

[fibrodude84]

Interesting thank you. What is the method of diagnosing chronic OI and what is used for treatment? My ENT did a tilt test but I may go back and mention that this may be what I have.