New Pcp---need Opinions Please

[Guest Julia59]

Hi everyone...........

Today my PCPs office called and said my blood work was OK---other then the cholesterol---of course-----pretty soon I'll need to get back to my pocket lint diet. That's probably the only thing I can eat that may make a difference. My numbers did not change much--total is still 195---and the HDL is still too low---27---

The person who called told me that the Doc wasn't going to put me on any meds, but said I should exercise vigorously and change my diet. OK---sure----I'll run outside right now and start running. I told the nurse---or whoever it was that I am unable to do aerobic exercise because of my health issues, and told her I try to control my diet---and usually do pretty good, except that I may have cut out too many of the good fats. Then I told her that I have increased omega-3 fats. I guess the good news is that it didn't get any worse.

More good news is my vitamin D levels are back to normal. I don't know if you all remember, but my levels were very low last summer----under 7---when normal was 25-55-----now I'm at 29----woo-hooo, one less worry on my mind. I don't know how they improved---The only think I can think of is that I started exposing my skin to the sun a little more---or well, just glad it's better. My CBCs were normal too----more good news.

My concern is that my physician already forgot my limitations, and may blow this POTS, EDS, chiari stuff off.

If she thinks I can exercise vigorously---she must not think any of this has any impact-----or do you think she just forgot, and didn't remember what was in my file, and just went by the Lipid level report?

I have an appointment with her on Thursday for a full physical. I just talked with someone here in Toledo who has chiari, pots, and EDS and she said this doctor refused her as a patient because she was too complicated---------------------

This is the same physician who told me she wanted to know which websites to look into to learn more about this stuff. I have only seen her once for a consult, and she scheduled my for a full physical for this Thursday--May 4th. I'll be printing her some information----and also take a brochure. I want her to see some of the studies going on.

I still feel really crappy, mostly weakness, headaches, lot's of upper spine pain---and more then the usual pain in my neck. I'll feel POTSY---the more I exert myself---and that means even typing this---or sitting up too long. I still muddle through, do a few light house chores, cook----but have to rest a lot between. Going out is still overwhelming to me, and I'm very limited----I'm not very steady on my feet---and just get plain wiped out. Of course the numbness in my legs continues to get worse, especially when I first get up in the morning, or sit for a while.

However, I count my blessings that I get out at all----it's just hard to see how limited I am when I do---I still never stop being surprised on how limited I am physically---and sometimes cognitively.

Do you think I'm worrying too much in advance about the appointment?---I think you all know how it is.

It's simply unbelievable the extent of the ignorance out there in the medical community.

Thanks for reading-------------

Julie :0)

[taylortotmom]

Well, it sounds frustrating that your new doctor has already disregarded your limitations. When you go back Thursday, I would once again remind her how this whole dysautonomia package works. If exercise is part of her therapy for you, she needs to understand that you will be starting at a much lower threshold than the typical patient and she may not see the results she wants. I think you are right for taking her info- at least she seems receptive to learning. Just keep emphasizing to her the physical limitations you have and dietary adjustments the dysautonomia has on your life. A change in diet and exercise to control cholesterol may not be the best choice of therapy for you given your history and she needs to be aware of this fact. Good luck!

Carmen

[Patricia Gallup]

To be perfectly honest you seem plain deconditioned. All your symptoms match those experienced by muscle atrophy. I realize for a POTS patient aerobic activity is nearly impossible, but the beauty of exercise is there are hundreds of different levels, from babies, to seniors, to paralysis patients.......PT's go through a lot of training in order to treat everyone at THEIR level, not the level of the average person. Perhaps she would write you a script for cardiac rehab. This usually includes nutrition training which could probably help your cholesterol situation, counseling and stress management, biofeedback training should also be offered in order to get your whole body in it's best shape DESPITE POTS, and get your pain controlled.

If Dr. Grubb is your doc I'm shocked he hasn't already ordered you PT, he's the biggest advocate for exercise my family has every met! Thank Goodness! If it weren't for sports and PT our daughter would barely be able to walk with her severe hypermobility syndrome.

Hope you get the help you need.

I can't help but think of the adage.......If you don't use it, you lose it. When it comes to exercise, your muscles, your strength, endurance, energy levels, and overall health. There are many specialists who can get your body back on track, hope you find one--or however many it takes!

[Lukkychrm42]

I agree that physical therapy would be a good step for you. That way the therapist understands your limitations and goes at YOUR pace. Maybe when you see your PCP again, you can remind her WHY exactly exercise doesn't work for you these days- when they see numbers on things like the amount of oxygen reaching the brain and being pumped by the heart when you stand up, they'll probably be more receptive to the idea of "exercise intolerance." So if she's adamant about exercise, then suggest physical therapy as a stepping stone. When I told some doctors I was unable to exercise they thought it was because of fatigue alone, and since exercise can help improve energy levels, they didn't want to concur with my opinion. When I showed them my TTT and stress test and they saw how my heart had 62% less oxygen to pump on standing, among other things, they became more receptive to at least needing to approach exercise from a different level.

I'm sorry you're not doing so well. I hope you're feeling better soon, and I hope this PCP gets back on track for you!

[Ernie]

Hi Julia,

I would explain her again my limitations and try the PT (with a modified program that matches my limitations).

[stellakitty]

However, I count my blessings that I get out at all----it's just hard to see how limited I am when I do---I still never stop being surprised on how limited I am physically---and sometimes cognitively.

I know how you feel... I am a fellow chiarian and I am only 17. When I look back to even a year ago I was much more functional than I am now. I have a hard time sitting up let alone standing. I cannot be left home alone (last time I was left home alone I passed out with a paring kinfe in my hand, knife got lodged in my gut, long story short I ended up under 72 hr lockdown for a "suicide attempt"). We are currently waiting for a call back from my nsg in Milwaukee to see what he wants to do, decompress my head or wait until after I am done growing and address the cervical issues. Luckily for me, my parents still make me get out of the house and my friends arre great about calling.

While I have no doubt in my mind that you are deconditioned (as am I and many other chronically ill people), I do not believe that deconditioning is to account for all of your symptoms. I was doing PT from April to November to no avail... I actually began to get significantly worse. I did my stuff in the pool, when I started in April I could walk in the water for like 15 mins, in November I couldn't even do one lap. Case in point while beign deconditioned can certainly make you feel worse, I do not believe that being out of shape can make you feel that bad.

If I seem a little touchy about the subject it is because I am. Many of us were in good shape before getting to this point. I had to deal with my dad last summer telling me that if I worked hard enough in PT I wouldn't need the wheelchair and I would be about 80% better. I worked in PT to the point of passing out, and now the majority of the time I can't even make it to the one class at school I am supposed to be in (checked my attendence and I have mised about 58 class periods).

Patricia- While I am very glad that PT has worked for your family, it is not the solution for every POTS patient. I am sorry if I have offended you but this is soemthing that I feel very strongly about... In no way am I saying that reconditioning will not help, I am just saying that it may not be the answer for some patients.

Alexa

[Guest Julia59]

Thanks for the imput------

AS far as being deconditioned----you may be right on that, however--I move any chance my body lets me. I think cardiac wise---I'm very deconditioned. So cardiac rehab could help a great deal. This needs to start very slow and gradual------Bev in Dr. Grubb's office brought that up---but then noting came of it, so I guess i'll need to push the issue. I try to do all the house work in my house, but vacuuming is difficult.

Were talking aerobic activity---I can't just hop into that, but I'm sure you all know that. My muscles arean't that bad----but with myelopathy due to the spinal cord compression, I will have strength issues. Myelopathy is myelopathy---exercise doesn't make that go away. Only taking the pressure off my spine will.

I also started walking when I can---not long, but it's something. I'm also using leg weights---mainly for the EDS to help the muscles protect my joints. I have been in PT in the past four years---- once for about three months , and once for about 4 weeks.

I think my Doc means---running-----that is about the only thing that will improve my low HDL more quickly. My diet is pretty darn good---but I wasn't getting enough of the good fats. Just the fact my cholesterol didn't change says a lot. My diet has helped it remain stable---although I was hoping for improvements with the HDL. I just don't think she had my chart in her view---just the test. So she is thinking the obvious------exercise to raise the HDL.

My husband can tell you----most of the time I over do it---I move more then I should when it comes to my house. So when I'm able to move---I usually over do it. I still get wiped out easily---but I still push, even when I'm unsteady on my feet. So when I have the strength---I use it all up, and then some.

Some days it's even hard to sit at the computer----spine pain is a big deal---and one must be careful on how they sit, move, walk ect----especially when instability at the cranial/cervical junction is involved.

My myelopathy continues to progess----so I may be able use PT to tighten the muscles for the EDS, but it won't improve the strength.

A PT could help me make sure my body mechanics is OK. Dr. Heffez, the NSG that did my cervical spine surgery said body mechanics is important, but he didn't schedule my for regular PT. He said swimming was OK, but the water was way to warm for me, and made me feel terrible. Old folks with RA need warm water, but someone with pressure on their spine does NOT----it makes symptoms worse.

I can't even sleep with my husband anymore---I keep him awake trying to find a comfortable position. The EDS/spine instability issues are a bad mix to have when it comes to body mechanics. Just jerking my head the wrong way can be nasty. I can't sit too long or my legs go to sleep/numb----worse then the usual.

So as you can see---I'm trying---maybe a PT will know what to do to tighten things up, but the myelopthy affects my arms too---it affects all my muscles.

Thanks again for your help.

Julie :0)