Struggling With Low Bp/cfs/fibro?

[potsgirl]

Hello My Friends~

For the last 3-4 months I have been dealing with new symptoms, including a greater degree of fatigue, and pain in my arms and legs. I'm wondering about CFS & Fibromyalgia. I've recently read that CFS/Fibro can be common with OI, which I have, along with NMH. New studies are showing (I'll get the study and post later) that there may be a protein called amyloid that can fold itself into a shape that's not healthy, which can reside in your brain stem causing CFS. You can get a spinal tap to check for these amyloid proteins which I'll be doing shortly.

My other big issue is that for the last three weeks, my BP is consistently lower than usual, and I've run out of options on how to bring it up. I can't tolerate Florinef, and Midodrine has done nothing to raise it. I already eat salt like crazy, drink lots of H2O and electrolyte drinks. My average readings have been like this:

Lying: 94/65 and HR 60 (always 60 - I have a pacer that won't let it fall below that)

Standing: From 62/50 and 115 to 69/58 and 89-125

I'm wondering if anyone else has tried something that has worked for them to get their BP up when it's really low. I can't drive, and can hardly make it around the house with this pressure. I am seeing my cardio in one week, but in the meantime, I'd really appreciate suggestions.....

Thanks!

Jana

[Simmy]

You've already mentioned everything I do to combat low blood pressure, except for compression hose, that is if you also suffer from blood pooling like I do. I'm sorry Midodrine doesn't work for you, my 10mg x3 has worked rather well at keeping my bp from dropping too far, along with Mestinon.

[tinkerbella]

sweet jana,

i'm so sorry you are feeling so miserable.

i hope we can all come up with some good ideas for you.

have you tried sea salt?

drinking cups of bullion several times a day?

laying with your legs up or flexing your feet, bending knees, crossing legs all to increase circulation?

some people drink too much water and flush the sodium right out of there body.

my friend can only drink so many glasses of water due to that problem.

IV Hydration really helps me.

compression hose.

xxx's

i'm still thinking...

love,

bellamia

[summer]

Hi Jana,

I'm sorry you have been feeling so terrible, and your blood pressure certainly says it all. When I was diagnosed with OI/POTS, my doctor told me that it commonly occurs with CFS, and often patients will fit the criteria for both. I did, and he gave me both diagnosis.

He told me that I probably had OI for years (since I was a teenager), but that at some point, a virus or something may have further weakened my ANS and tipped me over the edge into CFS symptoms as well. That is when I became really disabled, although I have always struggled with fatigue, etc, to some degree.

It's hard to imagine you are able to do much of anything with a BP so low. I know that for me, coffee always brings my BP up about 10 mmhg. I know we have discussed it here on the forum a number of times, and some of us find it helps, others find it makes them feel worse. I'm not sure which group you fall into. So guess that would be my suggestion, and you probably already know whether you can tolerate it or not. Wish I had more ideas for you. hope you feel better soon....

Summer

[Noreen]

Hello My Friends~

For the last 3-4 months I have been dealing with new symptoms, including a greater degree of fatigue, and pain in my arms and legs. I'm wondering about CFS & Fibromyalgia. I've recently read that CFS/Fibro can be common with OI, which I have, along with NMH. New studies are showing (I'll get the study and post later) that there may be a protein called amyloid that can fold itself into a shape that's not healthy, which can reside in your brain stem causing CFS. You can get a spinal tap to check for these amyloid proteins which I'll be doing shortly.

My other big issue is that for the last three weeks, my BP is consistently lower than usual, and I've run out of options on how to bring it up. I can't tolerate Florinef, and Midodrine has done nothing to raise it. I already eat salt like crazy, drink lots of H2O and electrolyte drinks. My average readings have been like this:

Lying: 94/65 and HR 60 (always 60 - I have a pacer that won't let it fall below that)

Standing: From 62/50 and 115 to 69/58 and 89-125

I'm wondering if anyone else has tried something that has worked for them to get their BP up when it's really low. I can't drive, and can hardly make it around the house with this pressure. I am seeing my cardio in one week, but in the meantime, I'd really appreciate suggestions.....

Thanks!

Jana

jana

if your doc has tried the first line meds, would he be open to trying adderal as an aid for vascular componenet - can't think enough right now to explain mechanism; Anyhow I do 10 mg shortacting Adderal in the AM then start my Midodrine at noon. Since you can't do Midodrine, maybe you could try Adderal in 2 doses - this was how it was originally prescribed for me for fatigue but not how I took it. I just didn't know why I only wanted one 10 mg in the AM until this board.

just a thought to run by your doc,

noreen

[tinkerbella]

also concerta er works well...

[potsgirl]

Thanks so much for everyone's input! I saw my internist, who confirmed my CFS/Fibro diagnosis, but also things there's more going on. He still suspects amyloidosis, so I'm having a fat aspirate biopsy and he's sending me to Barrow Neurological Institute, which has some of the top neurologists in the country. I just want to get this done and over with! Well, and feel a little better if that's not too much to ask.

Thanks again!

Cheers,

Jana

[tinkerbella]

jana

I wish I had a magic wand and could make YOU all better my friend.

Where is this place jana?

You'll have to educate us with low bp/cfs/fibro when you are feeling better.

I deal with the same thing right now.

I hope that they are able to work out a plan to get you feeling better asap.

Things have to get better for all of us.

I will be keeping you in my prayers and please keep us all posted.

You have not had an easy year and it's about time you got some answers.

May you feel better soon sweet jana.

xxx's

love

bellamia~

[Rene S.]

Hey Miss J,

I'm so sorry that all of this is happening to you. I don't have any good suggestions, just wanted to give you my love and support. You are very fortunate to have such a wonderful dr who can actually shed some light on the situation. I wish you all the best and will stay in touch.

with love,

Rene

[kayjay]

Just want to ask you to keep us posted. I hope you get some info that helps you do/feel better. When are you going to see the Neuros?

Also can you tolerate caffeine? Maybe that would raise your BP?

I wish you could be here to listen to my children fight...it is enough to raise my blood pressure! LOL

FEEL BETTER JANA!

[potsgirl]

Thanks to my special friends, Bella and Rene, for their support and encouragement. KayJay, a shout of thanks to you, too. And yes, I do have a mug of coffee every morning or I wouldn't function! In fact, on Friday I actually had a Diet Coke at lunch for the first time in about 6 months. I usually only drink caffeine first thing in the morning.

I'll keep everyone updated, and hope you're all having a great weekend!

Cheers,

Jana

[kitchmill]

I'm curious to know if you find something to help! I am pretty much in the same boat as you... POTS, CFS/FM. Although right now I'm suspecting Rheumatoid Arthritis. I'm actually seeing my doc about that today.

In general, I have my coffee in the morning (it's amazing what a difference the caffeine makes!) and take 5mg Midodrine 3 x a day. That helps keep the BP up, but does nothing for the fatigue.

Good luck to you!