yesterday wasn't good

[briarrose]

Yesterday wasn?t good. I?m sorry for such a long story.

It actually started about a week ago when I first saw my primary doctor for some problems with shortness of breath, pinching pain in my chest and blood pressure swings that I?ve been dealing with since last spring and has been getting progressively worse. He told me that he would do a blood test and pulmonary function test in a week. Well since I saw him last I have had severe pain that started in my right hip, moved to my coccyx and today my left hip. I can?t lie on my right side because I get very short of breath.

Tuesday I went into the office for IV fluids and I mentioned the severe pain in my hip and tailbone to the nurse, she went and told the doctor. She came back and said it was probably from the decrease in fluids and the IV would fix it. Well, I know the hypovolemia muscle cramp/pain and this wasn?t it. I?ve been severely fatigued since Saturday and even when I?ve been here posting, I?ve had to leave the computer for naps. I went to work Tuesday night and barely made it through 3 hours of a 12-hour shift before I went home ill. The pain in my hips got so bad that I couldn?t sit, walk or even move.

Wednesday morning I sent my doctor an email. I didn?t hear anything from him and I later in the day called the office. The nurse told me to take Ibuprofen, which I can?t because I?ve had an ulcer before. Then she told me to take Tylenol, duh, what do you think I?ve been doing.

I had put in a call to my cardiologist here in this state and talked to the nurse about the shortness of breath and blood pressure drops when laying on my right side. She called me back after talking to him and told me they wanted to see me early this morning. He isn?t sure what is wrong. He wanted to look at my chest. I?m allergic to dye so a CT is pretty much out. He called a pulmonologist and they recommended a VQ scan. It?s an expensive test that I?ve has twice before because DVT?s and Pulmonary Embolisms run in my family.

Anyway, I still had an appt with my primary doctor after that (probably should have cancelled it) because I got there and I was fatigued and frustrated. He got mad at me because I went to see my cardiologist and complained about all the tests they?ve done for me over the past 3 years. Then he said I needed a psychiatrist, ?Otherwise I will always have aches and pains? like a chronic illness patient.

I was so pissed that I told him that maybe some of the medical doctor?s in my life need to see a psychiatrist for the way they treat their patients with chronic illness. You can imagine how much that pissed him off and he told me 3 times while I was there that I could find another doctor, ?I probably need a fresh start.? I was so fatigued after arguing with him that I fell asleep while he went to get his nurse to get me a name of a Psychiatrist.

For the record, I rarely go to the doctor with my ?aches and pains,? but when I start to feel oxygen starved and have wider swings in my pressure I?m scared and worried.

So needless to say, I didn?t go have the scan this morning. I felt like crap when I woke up today, once again couldn?t breathe, severe nausea and headache started in.

Funny I?ve tried to give them credit for the problems that have been solved too. Like the 10 years I went through joint pain. I was told that was probably in my head too. Dr. Grubb was the first person to treat me with Neurontin and has given me at least 99% relief. The IV fluid usually gives me great relief. The beta-blocker controls my tachycardia nicely, just has a tendency to drop my pressure.

I?m not looking for complaints, sympathy or extra doctor?s visits. I hate sitting in a dang office, I have better things to do with my time and I hate waiting to see if my doctor is going to believe me today or not. I don?t like that our symptoms change or go full circle and come back again.

My doctor keeps comparing my chronic illness to diabetes. Well, diabetics weren?t treated well when they first came up with the diagnosis either. They weren?t believed for half of their symptoms. It has taken them 60+ years of research and medical technology to get where they are today.

OK, I?ve said more than enough. I kind of feel like I?m in between a rock and a hard place today. Shut up and put up with my symptoms and wait until they pass or just try to keep tolerating them.

[Ernie]

I am sorry Briarose for the poor treatment you received from your doctor. These doctors with their big egos cannot just admit that they don't know what we have. They prefer to tell us it is between our ears. I understand your frustration.

Ernie

[Guest tearose]

oh Steph, now I'm all charged! How infuriating! Besides getting through the insult of it all, I want to help you see a couple of next steps...I'm just brainstorming here...once when I got so tired of hearing maybe you are stressed, do you want to talk to someone, I decided to go to a psychologist and get "checked out". It was two visits and it was the best validation I ever did for myself!!! The psychologist said she learned so much from me and had respect for all I was doing to manage my chronic illness!!! She said I was emotionally very healthy and if ever a doctor had any question she would write a letter. She also said I was correct to fire doctors like I do and to decide when a doctor was worth "training". Ain't that a switch? So, maybe go to a psychologist and get your "certificate of authenticity" and go back to the internist for his reaction. I don't like the idea of this psychiatrist at first for two reasons. First, it was the internists choice and we know what he is thinking and Second, psychiatrists usually treat with medications and why leap there first? Maybe at worst, our thinking patterns have to be treated...why jump to drugs?

Oh, I'm so mad.

I shouldn't have to remind you but I will...do not look to this internist for validation!!! You own your body and you know what you are experiencing. If you cannot salvage this medical relationship then scrap it and create a new one. I do know how hard this is after investing time and energy into it, but sometimes, we must move on. I'm sure I'll have more to say but for right now I just wanted to respond and send you my support, hurting with you, tearose

[briarrose]

Thanks Ernie. It's just fresh in my mind and I haven't had a chance to settle down and be rationale with myself yet. I know in my heart that I rarely go to the doctor, I'm not a whiner or complainer. I suffer with many of my symptoms like all of you do. It's only when I get scared about a symptom being serious or going on for a long time that I do anything about it.

Tearose thx for commiserating with me. I know that if I was hearing this story I would be very pissed. I hate how people get treated by medical professionals especially since I've seen it a million times and experienced it a few times myself.

I thought about actually going to the psychiatrist to prove his *** wrong. Oh and he was hiding behind Dr. Grubb. He said that Dr. Grubb was the one that stressed it; actually, Dr. Grubb told him that in the first letter that he sent and hasn?t said it again but my primary keeps delivering the message like a battle-axe. It's funny but every time he doesn't have an answer for me he delivers it over and over again. I asked Dr. Grubb a few months ago about this and he said that he does recommend it for his patients but leaves it up to them he doesn't twist their arms.

I know myself well enough to know that I'm not imagining things and not making things up. I know that when I wake from a dead sleep and can't breathe it wasn't from an anxiety attack. I know that when I'm spitting up phlegm balls in the morning it's not just a figment of my imagination. I know that I usually take my blood pressure when I feel bad and am symptomatic so it makes sense when it?s low (as it has been taken by his own nurse.)

[calypso]

As Droopy Dog would say, "THAT MAKES ME MAD!"

I am so mad for you. I hate the fact that our health care system is such that if you are not dying, you are not sick. That is pretty much the way it works. My family doc told me basically only to come back if I am dying, even though a lot of days I feel that way.

I urge you to find a new doctor who is either a D.O. or has a holistic background but is an M.D. They are out there; you just have to look. I hope you at the very least have a few choices in your health plan.

You are not crazy. Even if any one of your symptoms were induced or caused by emotions, it's not like you actually intended that to happen -- and it's not going to change the fact that you feel how you feel. I definitely know that my emotions do seem linked to some of my symptoms, but there are also plenty of people out there who feel the same emotions and DON'T get sick from them. Regardless, we're all people, just trying to get through our lives as happily and comfortably as possible. If doctors aren't willing to help us, then forget it.

Your shortness of breath sounds odd. If it were a blood clot, there's a good chance you would be in worse shape by now or that you'd be hacking up blood. But it is never good when you can't breathe. As you probably well know, shortness of breath is my worst symptom (plus my massive weight loss/muscle wasting). I hate it. I haven't had a break from it for even one hour since POTS hit me. And I've had plenty of testing done.

I hope yours goes away soon and that you start feeling better.

Amy

[Guest tearose]

Okay fellow comrade, what next? We need to look at two things. Notice I said "we"? You really are going through this with others beside you! First, are your hips still in pain? Can you go to an orthopedist? Deal with all the physical issues. Then, second, if you want to get your letter of authenticity, find someone who you can trust. Take these matters into your own hands now and create the reality you want! Don't ask the doctor, tell the doctor what you need. I think you'll either be repairing this relationship with you pcp or you'll be replacing him. I think you can turn this around and find something good in it...eventually. Also, I would leave Grubb out of this and deal with the pcp first. I'm starting to cool down, how are you doing? tearose

[briarrose]

Calypso

Yep that's how I feel when I read stories like this from you guys. I'm usually too mad to respond or I fire off and see where it lands

Tearose

I'm feeling better since I've had a discussion about it with people that understand what I'm saying and where I'm coming from. I just needed a little reassurance, would have been nice from my doctor but you guys are better.

BTW, he is a D.O.

This morning would have been good to have an instant messenger conversation going on

[briarrose]

Tearose

Clarification - when I mentioned Dr. Grubb it was because my primary brought him up. I know Dr. Grubb and I are on the same page about my treatment, we always have been. He isn't forceful and he understands what we go through. He suggests it as an extra tool to use to help process chronic illness, not as a you're a nut case kind of thing.

[Guest tearose]

Clarification noted, however I never thought anything but support came from Grubb anyway. I have never met him but you seem very pleased with his care of you. I was being overprotective of you and was trying to say something like "try to deal with all of this and just tell him after it is all resolved".

I just got into email and forum life about a year ago, now you want me to learn instant messaging? I'm dancing as fast as I can!! I don't think I can type and think that fast! I am still more comfortable using a telephone. I'm just glad I was hanging around my computer this morning...

Keep on your path Steph, with hugs, tearose

[Guest GayleP]

I think you handled yourself really well. I'm glad you said that to your Dr but sorry you had to go through such an ordeal.

Like Ernie said, too many big egos and wannabe therapists in the medical community these days. If they would just stick to playing doctor instead of therapist we might get the kind of treatment we need.

I agree that you might want to see a therapist if for no other reason than for validation. I see a therapsit on and off who specialsizes with people who have a chronic illness and it's been really helpful. mainy, because I can vent to him when I feel frustrated with my doctors and he really gets it.

It was my choice to see him, not my doctors although they have suggested it many times in the days when they had no clue what was wrong with me.

GayleP

[sally]

Hi,

Sorry to hear about your visit, this family doc sounds like an idiot! Who ever heard of localized hip and coccyx pain from low fluids! Are you seeing a pain specialist for your chronic pain? I would say that it sounds like you made the right choice to stop seeing him, who needs that treatment while feeling poorly at the same time. Our youngest has gone through some pretty tough pain problems for many years and through a pain specialist, physical therapist, chiro & acupuncturist it only slightly helped her through some pretty tough patches, but it was a combination of treatment that we used and never once was it suggested that it was in her head by anyone.

I agree that sometimes people might need support with dealing with chronic illness from a therapist but for the doctor to automatically assume that it's totally in your head is irresponsible on their part as a physician. Usually these type docs are ones that are usually frustrated by not knowing what is going on with the patient and not willing to say "I don't know". From day to day, with a chronic pain problem any new symptom could represent a new problem that has nothing to do with the chronic illness. Pain in the hip area could be anything from female problems to a pinched nerve in the spine or an aneurysm or GI problems.

Anyway, seeing a therapist for chronic illness is to help people understand how chronic illness impacts their life and how to deal with it so a person can get back on the track of things of daily living, it is not a catchall to explain away chronic pain so a doctor doesn't have to deal the patient anymore. If that's the thought process of the physician, I'd say get a new one because that's not the type of doctor anyone needs treating a chronic illness, no matter what it is. Keep searching for another physician who will provide good patient care as well as an understanding about chronic illness. Might I suggest you see someone in a major teaching/research hospital such as Johns Hopkins? They worked wonders for us in the past and helped us understand what we were dealing with on several illnesses.

[blackwolf]

I too am doing the doc dance with mine over pain control. I would like to try neurontin but he has to try everything else firtst (mostly stuff i have already tried). I would like to say that I have had a pych review and, after 2 sessions, was told I was doing very well concidering my illness and that the doc needed to be more aggressive in treatment. Which really pissed him off by the way.

Hang in there and NEVER feel like you need to just "settle" for the treatment you get.

Blackwolf

[Eillyre]

Steph,

Boy, did your post get me!!! I was sitting hear reading, glaring at the screen as if it was the insufferable doctor himself!!! I'm so sorry to hear about that miserable experience and infuriated by the suggestion that it's all in your head! Why don't people believe us?

I agree with Tearose. It's time to take charge. This doctor obviously does not believe you and seems to be tearing you more apart than acting as your advocate. He should not be rebuking you for seeking help from the cardio when you couldn't get any relief from his suggestions. In your shoes, I think I'd probably try to make peace before switching to someone else, but would still definately find a new doctor.

Ditto on T's advice about finding someone to eliminate the physical distress, and working on the other issues from there. You'll be able to function better in your confrontation with the other problems.

I'm about to pass out sitting here, so I'll have to get back to you a little later when I'm able to think clearly. We're all here with you, though. Don't give up hope! I'll keep you in prayer!

Angela

[briarrose]

Thank you guys for all of your support this morning, it really has helped me calm down and get back onto a rationale track. I know my body well enough to know when something is really wrong.

My cardiologist called a little bit ago to say that my labs from yesterday are back. I have high blood sugar and he wants me to take care of it this week. He says it explains a lot.

When I saw him yesterday I told him that it was hard to tell what was new from what was old accept that something was terribly wrong. This past week I would have to get up in the middle of my shift to go sleep somewhere because the fatigue would hit me. But I used to have that problem all the time, thought it was under control. Now what, maybe it's blood sugar problems? You know the frequent urination, thirst, hunger, confusion, dizziness, brain fog; isn't that all POTS too. It gets confusing to sort out.

My grandmother was a brittle diabetic and would have to take insulin 2-3 times a day, but she cheated a lot too. I hope I'm not in for another chronic illness diagnosis, I've just accepted this one

[Jersey Girl]

I don't think the doctor treated you very compassionately at all! He'd be fired in my book.

I saw an orthopedist a few months ago becasue I was having hip pain. I was sent for an MRI of my lumbar area (lower back) becasue the pain is referred from there. I had an old spinal injruy 30 years ago which hasn't given me any trouble in 29 years, but sure enough he said the old injury "affected the dynamic flow" of my spinal column which was causing the pain. I had already tried huge doses of aspirin in the previous months for a calcification on my shoulder which he diagnosed also which probably had been there for some time as well. Anyway, I went for weekly massages of my hip and found much improvoement not only in the pain but the numbness I was having as well. These are not relaxing massages--apparently the nerves can become entrapped in tight muscles and cause all sorts of discomfort. I am still on the Neurontin for my head, neck, shoulder and back pain and it helps my hip as well.

I wouldn't go see that dr. again--possibly a D.O. would be more helpful. Take care. Martha

[briarrose]

Hey Martha

He was a D.O.

I did have 2 injuries to my tailbone when I was younger but never had them looked at; just couldn't sit well for a couple of months. I started having bursitis in my hip when I was 15 or 16 years old and they would send me for ultrasound treatments every week to help break up the deposits. I haven't had any problems with that since I was in my early 20's.

Why don't doctor's learn that when you have a chronic illness like this it's multiple problems usually, sometimes with multiple specialists to help.

My primary pulled up all the radiology tests they've done on me since I've been with that office, probably about 6-7 years now. Like he's going to make me feel bad for everything they've done and that they've found very little so it's a waste of time and money to keep exploring the avenue. And so that doesn't sound bad, I've had very little done in my opinion for all of the problems I actually do have, because I rarely do complain. I could be in his office everyday hounding him with every little thing

I work in the medical field and know how things can change from day to day with patients. Why do they do this mental crap on you?

[Guest Julia59]

Steph,

I'm so sorry that you had to go throguh such an ordeal. I would think common sense would kick in considering the swings in BP and the shortness of breath. But apparently that Doc doesn't have any sense at all.

Then you find out your glucose levels are high-----man I would be throwing that in you PCPs face ASAP............... He needs to know what dangers you could have been in if you would have listened to him.

Yes, some have been recommended to see a phychologist for stress problems from chronic illness----ONE OF THOSE PROBLEMS BEING IGNORANT EGOTISTICAL DOCTORS! I asked Dr. Grubb about seeing someone to help me deal with all the stress that has come from my health issues. He recommended Dr. Davis. I was lucky because Dr. Davis is a friend of Dr. Grubb's who deals with patients with chronic illness----especially dysautonomia.

Also there are other serious health issues that aren't related to our POTS, or are secondary to our POTS----and sometimes it's hard for us to tell the difference, so we call out PCP's and start from there. And for some of us, it ends up being the beginning of a living **** due to the Docs ego problems and their inability to admit they don't know about something. Do they understand that their ego issues can be a life threatning issue for the patient who is affected by that ego?

I hope things get better for you soon, you will be in my thoughts and prayers.

Julie :0)

[briarrose]

Julie

I read your post about driving home and not realizing how you got there. It made me think of so many times when I was personally to sick to drive but didn't have anyone to take me or too fatigued and could barely stay awake. I have pulled over so many times onto off ramps, gas stations and rest stops because the fatigue hits me. It was like being in the doctor's office yesterday and fighting with him, I fell asleep about a minute after he shut the door because the stress pushed me off the edge.

I had to stop working the 7pm to 7am shift because I couldn't remember how I got home. I even realized a few times that I ran through red lights and stop signs, that was enough for me (Wake up call to get off that shift.)

I know the PMS exhaustion and exacerbation of symptoms that was the end of last week and then the heavy menstrual cycle this week. One more reason my doctor should have been a little more low keyed towards me and yes he knew.

[calypso]

Briarrose,

How high was your glucose? My dad had diabetes and I honestly helped to manage his, so I know a lot about it. Hope it's not that and that it's a temporary reading or something.

Amy

[briarrose]

Calypso

I'm hoping it's not that either. My reading was 149. 20 years ago I used to help my grandma with her diet and I went to class with her about diabetes. I don't remember a thing accept that normal reading is 80-120? So does everyones go above 120 when it's related to eating a meal or does your sugar always remain normal.

I know that I had complained about a lot of symptoms and how do you figure out which is POTS and which might be related to blood sugar?

[geneva]

Sorry I am a little late to the party today....but just wanted to add that your pcp sounds like a regular nutcase, not you! I am so thankful that your cardiologist ran tests and took you seriously and I think I would drop a note to your pcp with your lab results to ask him to add to your records so that, if you do go back to him, maybe the next time he will really listen to you.

I don't know anything about glucose levels and what they mean but I hear you loud and clear about how the heck do you know what is "just POTS" and what is something else?? POTS symptoms include just about everything so it is hard to know. Maybe Nina has it right with the 4 day rule.

I am glad you have had time to put this morning into perspective and remember that YOU know best. Hope you have a restful weekend.

[Nicole's Mom]

Steph,

I read your post first thing this A.M. and only now am I able to reply. All day I've been thinking about what you went through all day- I couldn't stop thinking about it. I have been so angry about how you were treated!!!!

First of all let me tell you HOORAY for telling that idiot that all the doctors who treat chronically ill patients like psych cases should go get a psychiatrist themselves. Secondly- if we had 5 dollars for each and every bad behaving doctor throughout the ages who told a patient (usually of course it's women they act this way with) that she needed a psychiatrist instead of the doctor just believing the patient and thus dealing the issues/ symptoms at hand there would be enough $$$$ money $$$$ raised to fund all the research needed to wipe out every illness in the entire world. That's how often this has been done- bad behavior and psychiatry comments.

This doctor sounds like a typical narcissist/ easily ego-injured brute of a doctor. And if you had more energy I would tell you to file a complaint against him. Luckily you can come to this forum and vent. Why can't these docs just be respectful. Anyway- I am so sorry that you went through this. I wish we could all go to his office and picket outside his office in protest of his behavior. Sorry. I always stay out of angry at doctor posts but I've reached my limit.

Just remember that you are a highly intelligent woman who is very educated about yourself and your illness and and you do lots of research and you help so many others and you know your body well. Anyways- my advice is to continue trusting YOU and I hope he becomes history.

And meanwhile -do what you always have done brilliantly- thoughtfully and methodically go about seeking out answers to find out what you need to do for yourself. I have a lot of admiration for you Steph and the way you operate. You are one really, really special gal. Take care.

Bev

[Jersey Girl]

Were you fasting when you had your blood work done?

You definitely need a new pcp if he treats you that way. Martha

[Radha]

i think its terrible how you were treated and i'm sorry you had to go thruu that, i have had miserable experiences with doctors too, where they thought it was in my head, the worst part was that my family believed the doctors, it took a long time for my family to realize that i was really physically sick, i still feel like i have to prove to people how sick i am, anyway, i have terrible hip pain too, take codeine, darvocet, bextra, all the anti inflammatories, no relief, is there any med other than neurontin which i tried that really helps the joint pain? i cant sleep at nite, thanks and hang in there all of you! i love being a part of this group!

radha

[blackwolf]

Just a note about blood sugar. I find that I am most comfortable in the 60 to 100 range. I had a study done for one month as to how I feel and my blood sugar. That was when I lived in a small town with a PAC who really cared. Fasting vs. eating blood sugars are going to make a huge difference. My blood sugar was tested once in the am, before eating and twoce during the day. I was told that although I ran a little low, my body was adjusting well and not to worry. It was suggested that I have a fasting blood sugar done about once a year just to be safe. I still run "low" but am doing just fine.

Blackwolf