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#Lowbloodpressure #POTS #JointHypermobilitySyndrome #EhlersDanlosSyndrome

I've been having episodes of low blood pressure. Really low. Like 77/54. The top number is often below 80. But then, I think when I'm in pain, it gets high. Like 148/104. I'm scheduled for autonomic testing next month. Does this sound familiar to anyone?

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Oh gosh One More Health Problem! Help! #Lowbloodpressure #Anxiety #Depression #Migraine

Y'all I'm am so #anxious . I've been experiencing low blood pressure. Today it was low that I felt SO dizzy. I felt terrible. So much so that I couldn't drive to get any of my errands done. I felt SO much #Fatigue . When I went to the neurologist last Friday it was low according to the nurse 93/65. This has been going on and off for a couple of months. Is there anyone else that has experienced this? I'm planning on calling my pcp, but he's not the greatest. I'm really anxious about this. I dread the idea of going through the process of finding out the cause. I really don't need this.
I already suffer from several chronic illnesses, some physical and others mental health related.
#Anxiety #Depression #Fibromyalgia #Migraine #Hypothyroid #BorderlinePersonalityDisorder #CPTSD

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Chronic illness level up!

New diagnosis: POTS. Was on ivabradine for a few weeks and ever since I’ve come off it my heart rate hasn’t been happy. For some reason my blood pressure has suddenly become normal after being low for months. Not complaining, just very confused.

Went for an MRI last week for my sinuses, said it would be about a week for results but still waiting. On the bright side, that probably means it’s not (too) bad news. I’m glad I pushed to see them earlier though, because I caught a cold from my housemate and it caused hell with them. Constant congestion, migraines, lack of appetite, nausea, coughing, and I took about the same amount of painkillers in a week that I had taken in the last few months/ maybe even a year (I am VERY opposed to them & chronic pain has left me with a high pain tolerance anyway).

Waiting on GERD referral & have heard nothing. Doctor prescribed a PPI but didn’t put it on repeat and the progress made on it was lost when I had to fight for a week to get it re-prescribed after I had ran out.

Chronic pain has been quite a struggle. I’m concerned about the increase in occurrence of pain so I booked a routine doctors appointment. Also having a flare up of my foot pain (tears when walking) so it’s just an extra thing I get to deal with.

And on top of all that, trying to keep my mental state okay and making it look like I’m okay to everyone else. It’s all just really exhausting, but there’s this quote that I remember a lot (but will probably get it wrong slightly): “it takes ten times longer to put yourself together than to fall apart”

Okay, I’ll finish this with some better news. I’m cleared 1 year post-op and hearing loss is confirmed not to be an issue anymore. It was borderline but I’ll take the W. I also had my two jabs, perks of being disabled I guess.

#ChronicIllness #ChronicPain #Surgery #Postop #MentalHealth #Migraines #PosturalOrthostaticTachycardiaSyndrome
#GastroesophagealRefluxDisease #HearingLoss #Depression #InvisibleIllness #Disability #Disabled #BackPain #chronicbackpain #Lowbloodpressure #BloodPressure

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Gotta catch ‘em all

The last few weeks have been particularly hard on me.

Mentally, I’m mostly okay. Physically, I’m not. And that’s caused me to question a lot of things, wonder how it got to this point, increasing the severity of incidents where I won’t take painkillers.

I’m being referred to cardiology for a tilt table test.

In April, I was told I had low blood pressure but they didn’t seem too worried. At the end of May after worsening lightheadedness, I was told the same, and I was basically just told just to eat more and take iron supplements. And then last week, I went back again.

I initially made the appointment for something else a month before (I had to wait for a month), but then the lightheadedness got worse, so I told them about it again. I told them I had taken iron supplements, I was eating healthier than ever, I was staying hydrated, I was staying active, I was just really doing all the right things. And again it was low.

They’ve diagnosed me with postural hypotension in the meantime and told me to try compression socks for a week, and then if that didn’t work to call them and they’d refer me. So here we are. I get to have a blood test in September while I wait to be seen.

My sinus issues had a major flare up. I was so miserable with it that I sent a email basically begging them to give me an appointment (I was referred back in February but waiting list is apparently a year) because it was beginning to affect my mental health, and I get to see them in October.

It’s affected my hearing, so I had to chase up my ENT appointment. I hope it is just the sinus issues causing it, and not a third relapse of my ear problem, especially as everything seemed perfect last time I saw them. It would be nice to celebrate the first winter in 11 years without an ear infection.

And then of course, my referral for heartburn/ acid reflux. I see the doctors for a one-month review, which will end in the referral they wanted to do (because I had suffered for at least 5 years w/out diagnostics) but held off on. The medication they put me on has somewhat helped, but I’m still having to take gaviscon most days.

Finally, the chronic pain. It’s been difficult these past two days, and after (stupidly) lifting a sofa up because the cat pushed her toy under it (and then she herself went under it so I had to call my sister because I physically couldn’t lift it for much longer), it’s been worse. I still forget that I’m not really supposed to do things like that, and I always pay the price (pun not intended, but yeah cause volatarol is expensive).

I’m just really very tired. I remind myself it could be worse, which is probably what has helped me stay positive and mentally mostly okay, but sometimes it gets to me. Particularly when it’s yet another tablet added to my daily medication. It makes me tired, and I think “it only gets worse as I get older”. I want to stop them, but I know I can’t. I ended up in hospital the last two times I did.

Or another time it bothers me is when everything is getting worse/ is bad/ is happening all at the same time. This post doesn’t even cover all of it, but at this point I’m too tired to write anymore. Speaking of tired, I’ve only had 5 hours sleep each day for the last 3 days. I wake up early and then typically can’t get back to sleep because of pain and insomnia :))

#ChronicPain #Depression #GastroesophagealRefluxDisease #Heartburn #AcidReflux #BloodPressure #Lowbloodpressure #PosturalHypotension #Hospital #DoctorsAppointments #Doctors #Sinus #HearingLoss #ent #cardiology #Hearing #Medication #MentalHealth #Pain #BackPain #Insomnia #Painsomnia

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2 1/2 new Diagnosis #Finallyhavesomeanswers #Fibromyaliga #hypotention #Lowbloodpressure

So I've been tin the hospital for almost 2 months now and I can honestly say that I have never felt this good about being sick!!! I finally have answers and I'm not crazy 😜! I was recently diagnosed with hypotension and #fibromyalga and possibly #AddisonsDisease (wich I'm 95% sure I do and so does doctors. So all I'm waiting for is an appointment but finally I have answers!!!!😃😃😃😃😃😃😃😃😃😃😃


What do you do to distract yourself while in the hospital?

Here I am, once again, in the hospital. Repeat cultures off antibiotics came back positive, ugh... Frustrating after doing a month of IV antibiotics that infection didn't fully clear... Of course GI bleed is acting up and had ti get yet another transfusion... Due to covid only allowed one visitor and only certain hours, so lot of down time alone... Hard not ti focus on the pain so trying to find distractions. What do you all do while in the hospital or when alone? Suggestions?Looking for ideas! TIA #Hospital #Sepsis #Infection #Gastroparesis #ChronicPain #ChronicIllness #Dysautonomia #OrthostaticHypotension #Lowbloodpressure #nausea #Vomiting #transfusion #GastroparesisFlare


Almost Passed Out During PT

Title basically says it all. I have low blood pressure and have been close to fainting a few times. Today during PT I got really close. My ears starting ringing, vision got weird, and PT said I turned totally white. She thinks between that and my hypermobility I could have an underlying condition and that I should finally finish the POTs evaluation I bailed on years ago.

Also I found a massive, inexplicable, blue swollen bruise on my forearm at PT right before that happened, so I'm having a great day lol. I'm kind of more worried about the mystery bruise than the fainting.
#Hypermobility #Lowbloodpressure #Fainting


My pain is off the charts bad for over three weeks weeks now. No doctors will see me and my meds are not helping what do you do? Drs cx all my appts

I understand medical staff at hospitals are overrun with covid19 but why can’t anyone else get help too? I had 19 lab orders done back in feb for autonomic disorders doctor and over half came back abnormal(I get lab results through the labs web site too) and doctors office called today to say everything was basically normal and doctor didn’t need to see me..... when I got the lab results myself two weeks ago and researched what they meant all the tests that were abnormal results were either high or low and the doctor was looking for it to be the opposite of what it was. Like one test said normal is 25-30 my results was 14 but he was looking for a result that was above 30 to indicate possible tumor but when result is low everywhere says either the lab performed the test improperly or there is a need for further testing. I told him the lab tech was ill prepared and asking via text to her supervisor how to run all the tests ordered. Why not perform the tests at a different lab or tell me they were inclusive but to say they were “normal” when I know they were not is a lie. I’m
So tired of doctors not seeming to care.... just keep passing me on to another doctor cause they can’t figure it out and in the mean time I’m laying here unable to walk most days and in so much pain I just want to die. I have my first grandchild being born in July and I’d really like to know him but what kind of grandma can I be lying here in bed and crying in pain all the time? My known diagnosises are
CRPS, Addison’s disease and Adhesive Arachnoiditis along with hashimotos thyroid and high cholesterol and now I’m obese since starting steroids. I have right sided face pain with stroke like symptoms and excessively high blood pressure(190s/100+) with extreme drops to 70/40 in the same day and then back up again. They say it’s unrelated to crow but no clue what it could be. This doctor thought adrenal tumor but all lab work came back as opposites for tumor so what can that mean? According to this doctor that means I’m normal? Lol I’ve never been called normal.... #CRPS #autonomicdisorders #AdhesiveArachnoiditis #AddisonsDisease #HighBloodPressure #Lowbloodpressure #needanawers #whenwilldoctorscareagain


I'm just so frustrated...#Lowbloodpressure #hashimotos

Holidays are the most frustrating part of the year for me, being forced to be surrounded by family that don't even try to understand that I can't do what they do and live how they live. I'm constantly being left behind and being stuck in the house, since they choose to do activities that I can't do the way they do it.
My family are avid runners and hikers so that is all they want to do, get out and experience nature and all that. I can't stroll the couple of kilometers to the beach without needing to rest and reload, I can't stand for extended periods of time when they want to do bird watching or smell the flowers or take pictures, and if I go along and have to sit down then there is always a fight and I get left behind. I can't even do outings on my own since in this country it is not safe for a woman to go out on her own if she can't take care of herself and be alert, and when my blood pressure drops I am in the most vulnerable condition possible.
I have been trying to keep myself busy through hobbies (I recently started container gardening), watching movies and series etc. however it does not lessen the frustration, or the hurt, of being left out when it is the season that family are meant to spend doing things together.


Does anyone have summer outing suggestions for someone with chronic low blood pressure problems or POTS? #Lowbloodpressure #hashimotos #POTS

It's holiday season so everyone wants to go out and do things and it is summer here making it even more so. Does anyone have any suggestions for outings for someone who can't stroll for extended periods of time?
Best I've thought of is lying on the beach, coffee shop hopping, horse riding and going to the cinema.
My family who are avid runners/ hikers want to do none of the above, which has resulted in me being stuck inside with the alternative if I go with having to sit down after a couple of minutes and get left behind. I live in a country where its not safe for a woman to get left behind.