Feeling Overwhelmed And Need Doctor Apt Advice

[navyblue]

I know I've been posting a lot but just feeling overwhelmed by it all.

I feel like I can't really talk to anyone in my life about these invisible health issues and how sad they are making me. If I say anything to my mom she just goes "Oh, I'm exhausted too. I get dizzy at times. I have high blood pressure, at least you don't have to worry that. You are fine! Don't you dare go to the doctor again." I get where she's coming from, but I'm 21, I'm supposed to be figuring out my life, and ill health isn't just an occasional worry, it's completely taken over. I feel like I'm breaking down. lf I press further about how bad I really feel it just makes her sad. Same with my dad and brother, it just makes them sad and I don't like that. I can talk to my boyfriend but I sound like a broken record, and I don't want him to associate me with illness, I want to seem strong and vibrant and attractive. But it's so hard when I'm worried about this 100% of the time and I DO feel like my whole identity is wrapped up in a mentality of sickness.

The POTS symptoms and heart rate issues have been one thing, but I felt better when I saw improvement and recovery stories on here. However, lately I've been worried about underlying cause....I have a sort of numbness/tingling/occasional light burn in my toes and going up my leg...it's like peripheral neuropathy of some sort and I suspect an autoimmune cause...maybe lupus or Sjogrens. And I don't want to have to deal with that nonsense this young. I feel like an underlying cause like that is not a good sign for getting better from the POTS.

I feel worse lately. Dizzier and chest tightness...for the first time in the 8 months this has been going on I've been feeling truly fatigued, not just tiredness but a sort of feeling like my heart and lungs are straining. I keep telling myself how I've seen improvement before and will again, but this feels unprecedented and I don't know if I believe it. I have a doctor's appointment set up for today but even on the phone when they asked what the appointment was for I just blurted out "pap smear" because I didn't feel like listing out a bunch of symptoms that would likely be deemed psychosomatic...and when I see the doc of course I can't just say "I want an ANA blood test" I'll have to list out symptoms and just get a vague response about anxiety and burn out. I know I sound pessimistic, but it's happened before.

I'm 21, I'm supposed to be worrying about school and what to do after school and relationships and instead I'm constantly thinking about how bad I feel and what it could be and....I just don't know what to do. There seems to be no end in sight.

[angelloz]

When you talk to the doctor try to talk about symptoms as specifically as possible, when you seem vague I think they sometimes brush it off. I know how weird and indescribable this illness can make one feel.

[statesof]

Hey navyblue, thanks for sharing your experience it I can definately relate to the not wanting every conversation in a relationship to be about how sick you/we feel, but at the same time I find there are only select people who can really empathize, or even just listen in a way that makes me feel heard so it's a bit of a conundrum.

I found it difficult to find a doctor who could understand all my symptoms, even neurologists and autonomic specialists who are quite good still can't explain some of them. But I have been able to find doctors who have run all the usual tests and then some, so a few of the concerning options are out the window yet for those remaining symptoms that don't make sense I always carry a bit of concern in the back of my mind.

[Sylvie33]

Dear Navyblue,

As a mother and teacher of students your age I think two things are very important right now:

1. It appears you need someone to speak on your behalf to your family. I assume you are living with them. Even if you are not, you are young and need their comfort and support. Is there someone you now know who can intervene in your behalf? If not, it seems you need to try and find an advocate to do so. This person, of course, has to either have a knowledge of dysautonomia or be willing to be educated by you about it. I would suggest a trusted family friend, relative, clergy member, teacher, or medical and/or mental health professional -- or all of the above. I If you are in school you might have resources there. Your community also might have social services with people who may help you. You have a serious disorder that must be taken seriously. Equally important, (or more so) we are all especially in need care and comfort when we are ill. Your family appears to be in denial, or just unable to process the notion of your having an "invisible" illness. This leads to my second point:

2. You appear to be feeling alone and scared (with reason, given the reaction of your family) and, perhaps because of this, you are focusing on your symptoms. This is not a good idea for you are apparently freaking yourself out. You don't have any way of knowing right now if you have a co-morbid disease, or if anything dire is occurring. Try not to dwell! Again, this points to the need of your finding a good diagnostician and medical advocate, who can at least be part of the team mentioned above.

A suggestion to find a medical advocate: you might begin with recommended doctors here, and/or put the call out on this site to recommend someone in your area. It takes time. I went on line and then cold-called neurologists and finally got a simply wonderful one: he spoke to me on the phone for half an hour before we met (and then spent two hours with me). If you cannot talk to the doctor when you call, see if you can talk with a PA or nurse in the office. If they are not willing to talk on the phone, see if you can e-mail. A really good doc will talk to you on the phone!

Finally, it's a drag you must be an educator and advocate for yourself -- yet seeking help can be a way to empower yourself. In the course of seeking someone to intervene, you will be taking charge, "figuring out your life," and finding a source of support outside of your family to boot!

Download what you can that explains disautonomia in simple terms. After all, you found this site! Then.. the more difficult part. I would suggest talking with each family member individually to go over this information. Hopefully, when you do this, you can request they meet with you and your advocate. Perhaps only one family member will do this, but it will be a start.

What do you think?

All my best to you,

Sylvie

[MomtoGiuliana]

Great advice already.

It is hard to deal with doctors on this class of conditions b/c the symptoms can closely track anxiety and/or depression, and too many of us have been misdiagnosed or brushed off initially. Add to that that often doctors do not like it when a patient comes into the office with their own diagnosis or suggestions for tests, or when patients have too many questions. I have experienced that anyway.

I think it does help to write down symptoms when you are having them in a diary format. That way you can see trends yourself that might make it easier to describe to a doctor succinctly what you are experiencing.

My GP insisted for weeks that I had mental illness and refused to do any testing, even when I described (calmly!) that I noticed a change in heartrate from sitting to standing. He said I needed to see a psychologist. I resisted this but finally after several appointments that went nowhere I agreed to it. I wish I had done so earlier. The psychologist wrote a note back to him that she saw no evidence of mental illness/depression or anxiety but suspected a physical cause of my fatigue/illness. This "back up" from her did help to get my doctor to reconsider his diagnosis...although ultimately I had a severe "crash" and was admitted to the hospital where I finally got a correct diagnosis by an EP. I really hope though that most people don't have to experience that before getting a diagnosis these days (that was 12 yrs ago).

I hope your appt goes well.

[Sylvie33]

Short repsonse to momto Guiliana and all above:

The "all in your head" syndrome (which I experienced from my long-standing GP -- seeking replacement now) is why I made a list of neurologists who should understand POTS/dysautonomia and called them. Disclaimer-- I still got ome doctor who came to the phone who doubted my description -- but I could come in for $750 for a consultation. I found my current Dr. by calling the head of a university department, who referred me. Both spoke on the phone to me at length. New doc is a specialist in MS, but he gets it. I have since found a name on this site who addresses nothing but dsyautonomic diseases, but he also requires a $650 consultation in person. They do accept e-mails. I like my new doctor so much I will consult with him tomorrow about the second guy.

It does sound like Navybeans needs help in the endeavor to find a specialist, which is why I suggested an adovcate. Yet, Navybeans, please consider putting your location in your header on a new topic to announce a call for information leading to a specialist. Im brand new to this site, so perhaps someone can write here how "profiles" work. I also think it would help to be armed with one good simple article when discussing your symptoms and concerns with anyone who might listen to you and intervene on your behalf: like those who will see you in your coming visit.

PS don't bother going into it with receptionists on the phone -- immediately ask for nurse, PA, or the doctor.

Best,

S

[MomtoGiuliana]

We maintain a list of specialists here on DINET:

http://www.dinet.org/index.php/physician-list

It is also possible to ask the forum for a recommendation for a doctor in your geographical area.

I agree when you are feeling so poorly you do need an advocate who can help you navigate the medical system.

[Dr. Rob]

Hi NavyBlue!

I can certainly empathize with your frustration! I am a physician with POTS and it took 8 months to convince all my specialist doctor friends that this is what I have. You name the symptom and I had it! The most troubling was the "chest pain and tightness" with extreme exhaustion and profound weakness in my legs. I ended up having 1 left heart cath, which of course was normal and then a 2nd left & right heart cath to rule out pulmonary hypertension, which of course was normal.

Unfortunately, the majority of Docs have never heard of POTS/Dysautonomia and have very little knowledge of what to do to manage or be able to offer curative treatment/therapy.

I hope you find a physician who will work with you to recover and the back control of your LIFE!

[navyblue]

Thanks you so much for your input everyone! Seriously, it's so awesome how people take the time to read and respond.

I'm living with my family for the summer. Usually I live with my friends while going to college, which is what I'll be doing in about a month.

And Sylvie, you're so right- there is at least one silver lining in all this and that is a gain of independence. I have to take charge and figure this out and in the process I'm learning how to trust myself even while scared.

My doctor's appointment went pretty good! It was a timid young PCP who didn't seem to know about POTS at all, even when I explained the heart rate thing, she had nothing to say on it. However, she told me she ordered a CBC and TSH blood tests and I risked asking for the ANA (to look for autoimmune issue so I can either stop worrying about that or figure it out), citing my stiff hands, and according to the forms they gave me after the blood draw she ordered it! So that's happening.

[gjensen]

It makes all the difference in the world to be able to see a doctor that specializes in autonomic disorders. They know what causes to check for, and they get it when you say it.

The illness is difficult. The process is difficult. The relationships can be difficult.

I can relate, and I am sorry. Be encouraged though. As tough as all of this is, you will make progress.

[Katybug]

Hi navyblue,

I'm glad your appt went well and the doc was open to your request. One thing that I always remind myself of when I feel hesitant about talking to a doctor is this: No one, including doctors, are going to care more about your health than you do. So, since your paying them, they should be working for you, up to and including listening to your ideas and concerns and responding to them in a productive fashion.

I went through well over 30 doctors before finding my current team and although it was a long process, it was totally worth it to keep searching. Some docs were condescending and I chose to not see them again, others tried everything they knew to do and eventually said they believed me but didn't know what else to do. I did have to take some small breaks from searching for docs that could help me because of the mental toll it can take to go in with high hopes and come out deflated, but I never let myself go more than 3 months without trying to figure it out.

The other thing I have to remind myself of is this: if my mother, sister, or best friend were going through this, what would I do for them? How hard would I fight for them? What rock would I leave unturned for them? Then, why would I not do the same for myself?

You have support here for your journey. Keep fighting for yourself.

[Sylvie33]

Hi again Navyblue,

I agree with GJenson that meeting with someone who clearly knows about dysautonomia is essential! I think he correctly points out your next steps.

I'm glad my words about autonomy resonated with you, yet I could tell you have great intelligence and resolve -- you will do what is needed for yourself.

However, I still feel it would make sense (now or later) to work with your family, for you will need them emotionally, and most likely, financially, if they can help in this respect. This is certainly true if you need to see a specialist, for I can only get partial reimbursement for my visits.

Therefore, I suggest you pull off some information from this site (and even this thread) to convince your parents you need to see a specialist sooner than later. Again, your school might have resources to help with this. Given you are symptomatic, you may need to talk with someone in student health services for support. As I suggested earlier, if there is a decent counseling service there, it may make sense to contact them as well.

Another suggestion to offer as I am also just beginning my work-up. Today, in preparation for my visit to my neurologist I made a list of my symptoms. I also wrote, but did not yet send, an e-mail to a dsyautonomia specialist I have not yet contacted (he is the one who does not take phone calls). I am bringing that, along with his web-page to my neurologist today. I am hopeful they might work together. It was also very helpful for me to write a short chronology about times of onset and progression of symptoms.

Again, I too have just entered this world. Katybug's persistence is inspirational (30 doctors!) and we are both lucky to have such good minds taking questions seriously and giving wise advice.

Best,

Sylvie

[navyblue]

Great news! Negative ANA and good blood counts all around. So with that I feel I'm dropping the lupus fear, as like 98% of people with lupus have positive ANA.....as for Sjogrens I still worry somewhat (70% of people with Sjogrens have ANA) bc of dry mouth every morning and the tingling but....I presume to know too much. I somehow think that if I'm mentally armed with "all the things it could be" that I'm somehow better off, but sometimes it just causes needless worry.

Thanks for your support everyone.

Also I had a great weekend trip to New York City to visit a friend. I was really really worried about it being spoiled by how I felt, but surprisingly, I did not feel dizzy during it at all. Perhaps it was because we walked so much, I find the dizziness to be worse when I sit around a lot. Encouragement to everyone to keep moving even when you don't feel like it because it can really help to "get the blood moving" and get those calves to pump better.