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Another "You're such a difficult & complicated patient"

Jan 06, 2017 12:12 PM

I followed up with my cardio-electrophysiologist yesterday on my POTS & meds. He was not happy at all the side effects my body was having to the Pindolol & Fludrocortisone. After saying the comment above he went on to say I'm abnormally reacting because where most patients bodies would have a positive improvement, my body was negatively responding to the extreme. I couldn't help but laugh and told him he's about the 7-8th doctor who has said the same to me over the past 10 years. He said my BP should have gone up as high as 150/100 but I'm barely maintaining a normal low BP.

He changed me to Midodrine & Carta (Diltiazem)... Does a anyone have Ave any experience with these meds?

Besides trying to deal with the new diagnosis and meds, I've been struggling much harder with depression & anxiety since November. That's one reason I'm only making random appearances. I think of you all often and pray daily your lives are blessed with less stress and pain, or at least that you have the strength to bear through it. Please do the same for me. In the 10+ years my health has been going downhill, this is the hardest I've struggled with depression and anxiety.

I'm hunkering down for a cold wet weekend, planning to stay in the recliner or bed snuggled down, and thankful we aren't cold enough for the ice, sleet, or snow (only by about 45 miles away). Those affected by the worst of the storm (Helena) be sure to stay warm and try not to slip and fall of you must step outside. Hugs love & prayers to all! πŸ™‚πŸ’•πŸ™πŸŒΈ

Jan 06, 2017 12:22 PM

We're contending with -20 to -35 F wind chills here morning & night, has been going all week. Maybe a break after tomorrow. Everything hurts. Hugs & praying for improvement in ALL facets of your health.

Jan 06, 2017 12:30 PM

Oh wow... Try to stay warm & hopefully tomorrow will bring nice warm sunshine! My hands and elbows have hurt since our cold snap just before Christmas. This will be our longest cold snap, with Sundays low between 18-20, but we'll be back at 70 by Tuesday or Wednesday. Only with sjogrens & fibro (& suspected Raynaud's) anything under 80 is too cold to me. (((Warm hugs))))

Jan 06, 2017 12:50 PM

(((( gentle hugs )))) my doctor always greets me with "Here comes trouble!" we just have to laugh because it's true.. I never react to treatments the norm. My ilnesses never present the norm. I have kidney infections often but the signs are not what one would expect. Its one reason I always say treating any of these chronic conditions is trial and error. We all react different to the treatments so it's just a matter of finding what works for you. And if you are like me then after about a year to 18 months later that treatment stops and my doctors and I are once more searching for what to try next.

I hope the new meds work for you hun.

Depression seems to be more prevalent in winter months. Are you getting enough vitamin D?

One year I was diagnosed with SAD. (did I get that right?) trouble was the bright light they had me sit in front of triggered my migraines. I used to follow the sun from window to window.

Thinking of you sweetie. (((hugs)))

Jan 06, 2017 3:30 PM

Oh Flappsy, I completely understand. My doc greets me with, hows my favourite pain patient who no meds work on 😞
And my specialist, oh well theres no other medications. We've tried them all so you'll just have to stick with the Tramadol and cope the best you can!
Geeze I wish some of these drs had our conditions. It might make them understand a bit better.
Gentle hugs πŸŒΌπŸ€—

Jan 06, 2017 3:52 PM

Lol Mimikay, you made me laugh! My psych is running some bloodwork since he says my antidepressant and BP meds could be conflicting and he may have to increase my antidepressant. My vitamin D is likely low because I've not been outside in the warm sun since New year's Eve. It's either rained or been cold or windy, or as in today all of the above. Since my sjogrens I can't tolerate cold or wind. I've never really struggled with winter depression more than summer. I really just feel overwhelmed with all the changes and new dx since October, and feel that's why my depression is worse. And like you, I really have had unusual reactions and problems with every single medical issue. Every surgery has been complicated. And I have a list of medication allergies so long I carry it with me. My redactions are redid and I have to laugh.

Ouchithurts2, it does feel demeaning sometimes, as if they're saying "omg I have to deal with this person again!".

Thank you both for your support! Hugs love & prayers for warmer weather & less pain for all! πŸ™‚πŸ’•πŸ™πŸŒΈ

Jan 07, 2017 10:03 AM

Flappsy, I am so sorry that you're going through this. It sure has been the ride from hell for you. I have been told by many doctors the same thing and also been called "a mystery", a confusing case, complicated and bewildering. I understand that doctors are human beings but they go to school to learn to help people like us.
I wish I had some info on the new meds you were prescribed but I don't.
I totally feel you on the anxiety and depression. It's very difficult to cope with and makes the pain all the more intolerable.
Sending you warm and healing {{{hugs}}}, well wishes and lots of love: You know where to find me if you need me.πŸ€—πŸ’•

Jan 07, 2017 5:00 PM

I really appreciate the comments in this thread. I am a physician myself, now 74, and always felt a great deal of compassion for patients in pain but nothing prepared me for the challenge of actually experiencing severe chronic LBP myself for the past year, after a fall. Now I KNOW what it is like to have daily pain and to keep hoping for, and seeking, improvement. I cry with sadness and anger when I read how some chronic pain patients are 'greeted' by their physician. I hope you can let your doctor know he(she) should applaud your ongoing efforts to find solutions instead of putting you down for not responding to treatment the way he (she) is hoping for.
My heart goes out to you and your struggle.

Jan 07, 2017 5:25 PM

Hello Skydancer. Am so glad you are here. I was a home health nurse before fibro took over my life. Its hard being on the "patient" side instead of caregiver side.

Jan 07, 2017 5:35 PM

Mimikay, that gave me reason for a big old belly laugh tonight! Thank you for that. Yes, I often get that response as well. Flappys, I am thinking about you.

Jan 08, 2017 2:22 AM

Hello, I'm new to this forum but sooo thankful I've found it!! I'm that 1% patient. My doctors would always cover the list of possible side effects or worst outcomes and say but it's only a 1% chance of that happening...well guess who always gets it. About a year ago my nurse practitioner ran a pharmacogenomics test where the test to see if your genetics automatically reject certain medications. Turns out mine did and 4 of the meds I was prescribed were useless. I know not everyone can get the testing done and it's not for every med, but if it were it would just confirm all that time we weren't crazy, the meds just didn't work. I hope things work out for u soon. This really sucks. Thinking of you.

Jan 08, 2017 2:26 PM

Thank you Alwayz, Skydancer, Amanda, & JustCj! I've been tested genetically, and I have the MTHFR gene defect (can't absorb or metabolize B9-folate), which causes issues with depression & psych meds among other issues. I also have two other defects that cause problems with meds, especially benzodiazepine meds & pain meds. I forget all I learned from researching, but Mayo Clinic is using my bloodwork for gene research.

Really struggling today from the head cold, cold meds, & new BP meds for POTS. Doc wants my BP to go up and level off, but the only thing rising is my heart rate, mostly when I get up and move about. It was 134 & 122 overnight just going to potty. The meds (not sure which one (s)) are increasing my tachycardia. I was put on Midodrine & Diltiazem Friday, and pharmacist told me to use Coricidin GBP cold & flu meds Saturday. I feel lousy πŸ˜·πŸ€’

Jan 08, 2017 4:21 PM

Flappsy, I have that MTHFR gene defect and only found out when the doctor did the pharmacogenomics test on me (and, when I was reading the report, the doctor said that part of the report was unimportant to him or me and he only wanted to see which meds are working and how my body metabolizes them). Can you imagine the stupidity of that statement?!?! Well, there are things you need to do when you genetic defects to rectify or at least help the situation. If I hadn't asked for the copy of the report, I never would have known. And then the diagnosis of Reynaud's Syndrome that I just got when the doctor saw my hands were red but my fingers dead white and cold with blue nail beds.. I don't want to have to write down any more freakin diagnosis!! (Aren't you proud of me? I didn't use profanity..LOL!!). Just wish I could go once a year for a physical and have a regular life.Alas, this is the hand I was dealt so I'll keep my head up, support my fellow warriors (my peeps), and find the gifts and joy that appears in each and every day. {{{{Hugs}}}}πŸ’•πŸ€—

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