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Posted 9/6/2016 4:39 AM (GMT 0)
Hey Y'all :)

I'm curious to see if any of you guys have a similar problem.

I mentioned before, I think, that I've been having problems with my heart rate. After walking up and down the hall at my cardio's office, it was 148. Walking across the parking lot is miserable. I've had to stop a couple of times and lean against a car. I'm just waiting for one that has a car alarm. That would really shoot my pulse up:) I did a month long monitor/holter study, and my average rate was in the 120s. I wake up feeling like I've run a marathon, at a world record pace. Thankfully, no arrhythmia was found.

I've had multiple echoes because I do end up with pericarditis, and/or pleurisy, every few months. I know that kind of pain/discomfort and this is totally different. My cardio agrees. My pulmonologist checked for pulmonary hypertension by ordering a heart cath, and that came back negative.

So-the my pain, cardio, and lung doc, feel I'm tachy due to pain. If I feel the pain that I associate with pericarditis or pleurisy, I'm to call, or text them immediately. I'm taking Atenolol, but often my bp is too low, so I have to hold it.

I'm scheduled to see an electrophysiologist in two weeks. Cardiologist referred me to one that he feels understands how autoimmune conditions completely wreak havoc in my body. Plus-he said he's pretty funny:) He's actually associated with a different hospital, so I definitely appreciate him helping me out.

If the eclectro dude thinks everything checks out, the pulse rate with no other symptoms, will be tied into my pain levels.

I've been aggressively trying to lower my med doses since I have numerous surgeries and procedures each year. I'm actually having yet another surgery in 2 weeks with a hospital stay. The rounding PM doc is excellent in trying to relieve pain as much as physically possible, but you guys know how difficult it can be when you have the tolerance of a water buffalo. After an extensive surgery I was in ICU due to pain med doses.

The question will be-what to do? Like all of us, I've adjusted my pain level over time. My ever-changing relationship with pain has changed my whole perspective. I never say 10 since I've yet to have a limb amputated-major ouch. Jaw replacement a 9 and childbirth 8(yay for a healthy preemie). Now it looks like Drs, other than just my PM, will have a say in pain control and pain rating This just seems so strange to me. Most days I'm sitting at a 5/6, which is kinda miserable, but doable. Running tachy definitely feels awful, but being unable to control pain when inpatient, will feel more awful.

Cardio is adamant that the pulse must be lowered. Lung doc wants me using oxygen at night to take some stress off the heart. PM doc wants me to come in after my next surgery since meds will be altered by the rounding PM.

Do any of you guys have similar problem? I know acute pain can mess with vital signs, but do you guys have a problem with chronic pain? I know we are troopers and try not to complain, but how do you decide your meds aren't doing enough? How do you plan for surgery? How do you juggle everything and retain some semblance of a normal life?

Argh, Ugg, Grrrrr...

Post Edited (rocckyd) : 9/7/2016 12:48:23 PM (GMT-6)

Posted 9/6/2016 11:01 PM (GMT 0)
Hi Rocckyd, If your Tachycardia is caused by your pain like you said some of your doctors think. Then I would encourage you..... not to try and ""Grin and bare it"" ( the pain) any longer! Being stoic and not taking adequate pain medication, is one thing, but when it starts affecting your physical well being, well......... that is entirely a different thing! A continued rapid heart beat, such as yours is not a good thing! I can well understand your Cardio insisting that your pulse rate be lowered! Your heart is a muscle and it needs exercise but like all muscles exercise can be over done, and muscles can be damaged from over exercising. This can be scary stuff Rocckyd and with everything else you have going on, I doubt that your body needs to cope with this too!

I do hope that you can find a good solution to this, I know you have said you have been trying to cut back on pain medications, but what if you are required to take more or stronger pain medication? Would that be so bad? If that is the only thing that will get your heart rate back to normal, what other choice do you have? I would think leaving it as it is would be unacceptable, wouldn't it???

Maybe something to think about, as always I will continue to keep you in my prayers!

May Gods Peace be with YOU!

White Beard
Posted 9/7/2016 12:20 AM (GMT 0)
HAve you been checked for atrial fibrillation?
Posted 9/7/2016 2:53 AM (GMT 0)
Rocckyd:
You are in a similar situation to mine . . . confronting multiple chronic health issues and co-morbities that overlap and affect each other. Auto-immune conditions, in particular, can be difficult for medical clinicians to treat as there is wide individual variability and the number of organs and organ systems affected can be many. That is, there is no simple solution, no quick fix.

I know that you have been in palliative care and found it somewhat lacking. It is true that palliative care can be very different in context and delivery depending on the area of the country that one lives in. But I wonder if revisiting the idea of Palliative Care might be worthwhile for you, in the long run.

For me, the benefits of Palliative Care are many. In particular, the assignment of the Palliative Care MD as the lead coordinator has been immensely beneficial for me. My Palliative Care MD communicates with the varied specialists and ensures that each specialist understands what the other specialists are doing. The role of each specialist is defined and clear. Medications and procedures are evaluated as a whole and the risk/benefit of each discussed. Each recommended procedure is evaluated on its merits. Each medication is evaluated on its merits. My "problem list" is generated and reflects a list that identifies the most important issues to the least important issues. Issues of low priority may never be addressed.

My life of Palliative Care is more the life that I want than the life that I was experiencing in seeing multiple specialists shot-gun style.

It also comes with a caveat that not all medical issues/problems can be solved or fixed. This can be a difficult concept for some individuals to accept but for me it was not a difficult hurdle. My body is tired. I am psychologically exhausted. I am done. I gave it as good a try as anyone could.

This is no equivalent with "giving up."

Palliative Care is all about living you best life within the parameters of chronic, life-threatening illness. The traditional medical model (seeing multiple practitioners seeking a cure or fix) is not a model well fitting for individuals with long-standing serious chronic health issues.

Palliative Care is making a positive difference for me. It might be worth exploring again, for you.
- Karen -
Posted 9/7/2016 2:14 PM (GMT 0)
Since your having to reduce pain meds before your next surgery in two week, you might want to look into counseling with a huge focus on relaxation techniques, if you can try self hypnosis for calming and counseling that might be the best option for you before your surgery.
Yes, pain can effect everything and thinking about it can make it worse, if you can find some way of guided imagery for a distraction, hypnosis or talk counseling that might help.
Taking the focus off the pain can sometimes help, maybe some mind games, sometimes it is mind over matter.
Then after this surgery get to your pm doctor and have a serious pain management talk, maybe talk about a possible pain medication pump but something needs to be done.
You have my prayers on your up coming surgery. Please keep us posted. Thinking about you and hope this info can help you some.
Posted 9/7/2016 5:15 PM (GMT 0)
Hey rockydd.Good to see you on.

I have chest pains occasionally.The 1st time I was admitted and had a heart cath done.It was fine.

On the rare occasion that I get these pains I take 1-2 mg of xanax and hope for the best.

Hope you get to feeling as OK as it gets.

Take care.

Rick
Posted 9/8/2016 5:09 PM (GMT 0)
If the person has been diagnosed with chronic stable angina:

Dissolve 1 nitroglycerin tablet under the tongue (or use nitroglycerin spray under the tongue).
Repeat every 5 minutes until the person has taken 3 tablets in 15 minutes.
Posted 9/10/2016 11:37 PM (GMT 0)
Thanks again, as usual :)

Karen, I actually have had pretty good experiences with palliative care, but I keep moving in/out of the program.

The problem we run into is that many of my meds are either used off label(which isn't a huge deal), or used in a non-traditional/trial manner(HUGE deal). Ex: receiving BOTH Rituxan and Cytoxan infusions at the same time is not a common protocol. For whatever reason, this puts me in a grey area. It's hard to complain since many areas don't even have this option. Thankfully, pain control is still a goal regardless of the speciality. I guess it's pretty obvious since I now have multiple docs weighing in on the matter.

A HUGE thankfully-atrial fibrillation has been ruled out. The only dangerous rhythm I've encountered so far is when I was septic with a fungal infection and also developed pericarditis. Pulse shot up to 200 and I can't even describe how that felt. Well, if you've ever had a medicine induced stress test, you probably know the feeling. When I have one I don't even feel the difference since my resting heart rate is so high. Cardiologist was shocked that I didn't even blink and eye when the injection was administered. Anyway, except for that extreme combo of illnesses, my pulse has been fast, but regular. Just-I'm running the Boston Marathon in my sleep, regular.

Char-I think you are right. I'll get the surgery over with and then I'll let the docs have their pow-wow. Team up here might just defer to Duke and see what they come up with.

Probably a stupid question, but does a pain pump only help with back pain? I ask, because it seems like most of you guys that have them, have major back issues.

You all know my fear-med dosages for daily use will get to the point that pain control after procedures/surgeries will be almost impossible. Or-I'll have to be in the ICU as before.

Maybe I'm tachy because I'm just so excited to start each and new day:)
Posted 9/10/2016 11:44 PM (GMT 0)
Rocky, very good about ruling out AFib....youncertainly don't need that on top of everything else!

Hoping tomorrow is a good day for you!
Posted 9/11/2016 6:15 PM (GMT 0)
Roccky, the pump is used for various conditions. We just have more people come through here with back problems with pumps, lol. We have had a small amount of neck patients comes through that has had success with pumps.

You can go to Medtronics.com & they have a list of medical conditions that pumps can help with. Keep in mind with a pump it will only cover pain in one area only. I have both neck & back problems, it does nothing for my neck & pain in the shoulders. The patient has to decide which area is giving them the most trouble. Read about the PTM's that are used with pumps too. Once the dose is figured out the dr allows the patient to use this device for break through pain instead of oral meds. For some people with multiple areas of pain if they can get the worst area of pain under some control they find the other areas were not as bad as they thought. It boils down to figuring out which is the most severe source of pain. Anyway, its something to think about.
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