Pain with POTS?

Hi,
it's been a while since I last posted here, so please bear with me.
I've been told I have POTS after a tilt table test in January. Fast forward to June and I have another TTT that show no signs of POTS anymore - I guess I was just having a good day when I had the test.
The day before the test my HR went all the way to 220 at rest - I was in the hospital at that time and the episode was documented as atrial tachycardia - the doctor told me that "it could have happened to anyone"?!? Really.... (insert more sarcasm here). Anyway...
I am taking A LOT of meds for my condition, but I am unsure whether they help or not. (propranolol, mestinon, florinef, klonopin).
Lately on top of adrenaline surges, spikes in BP/HR, exercise intolerance, chest pain, headaches - you know the good stuff we POTS people deal with on a regular basis - I started experiencing some more disturbing symptoms. I am in PAIN. There is not one single spot on my body that doesn't hurt. It's a pain that I feel like it's coming from my bones. My arms hurt and feel weak, my legs feel like jello at times, my ribs feel like bruised, my skin feels as if I have a sunburn or a bruise (at times I check myself for bruises but there are none), I also feel like something is squeezing my rib-cage (like a bear hug) and I can't breathe properly. I am not short of breath though, it feels more like I'm breathing through a filter and my lungs don't get to expand properly. I also get these funny tickling sensations on the lower left side of my rib cage, towards my back). I can have one or all of these symptoms at the same time, and they can last from minutes to days.
My next dr appointment is next year, so for the time being I am on my own. Going to the ER is not going to help - the drs there have the lousiest bedside manners ever (last time I went I was told by the dr not to bother coming back anymore unless I faint or something). I wonder if they think I go there just because I have nothing better to do in the middle of the night and I just need a place to empty my pockets - yeah, I have no better use for my time or money!
Can anyone relate to this?  Are these symptoms typical for POTS? Could these be side effects from the meds? Is there anything I can try to do to feel better?
Apologies if my post seems too sarcastic at times, but this is sooooooooo frustrating.
There are so few answers for us, and no real treatment...
Thanks for reading
Alex

[mtgardner]

First of all I am sorry you are going through so much.  It is hard when no one pays attention to your symptoms and you don't have answers.

Have you been to a center that specializes in autonomic dysfunction like the Cleveland Clinic for evaluation or consult?  They have the experience to deal best with these types of diagnoses but it is hard for everyone to get there.I have heard sometimes they do email consults but I don't have first hand information about that.

I am wondering if your overall body pain could be a type of neuropathy.  A good neurological work up may be in order.  Do you have a neurologist you can work with?  

There are lists of doctors too listed on some sites that are deemed good with autonomic dysfunction.

Going a year with this type of pain and these types of problems is just not acceptable.  You need more help.  Building your support team and getting doctors in place who understand your condition and you can work with is one of the most important things you can do when you have autonomic dysfunction and it can be one of the most challenging.

You don't list what state you live in.  If you let others know they may have recommendations on doctors.  Also if there is anyway to get to one of these centers for evaluation and a tx plan that may be one of the most important things you can do.

Others here may have more suggestions.  I hope things get better for you.
The Dinet site also has great sources and lists as well for POTS.

Marie

[Dina723]

I have pain with my pots. At one time it was much like what you are describing-all over! My doctors discovered through testing that I had a lot of inflammation in my body. This causes a lot of pain and that feeling that you have been in a car wreak! Blood tests can tell you if you have inflammation.
Also, I have neuropathy, but it is in my legs and hands. Neuropathy pain is nerve pain and that is different from muscular or bone pain. It's often a pins and needles or tingling feeling with pain weakness and contractions. I have pain with it but only in those places. The theory is that due to lack of oxygen in my body, my nerve cells can't generate and get the proper sugnals out. They are screaming for air! Neurologists test for neuropathy. Those tests aren't as fun.

Lastly, another blood test should check your vitamin and mineral levels. I have Vitamin D deficiency-a lot of POTSy's do-and the deficiency if it's great enough, will cause a lot of pain in your bones and joints. Along with that you should have your calcium and magnesium levels checked as the three go hand in hand. Also have your B vitamins checked.

Can you go to another doctor in your area? The one you have needs to be fired. When a doctor is telling you not to come back, the implication is they are "done" with you. I've been there too and have "fired" several doctors since I've been ill. I hope you can find someone who will listen to you and help you figure out what's going on. You shouldn't have to live with the pain.

[alex74alex]

Hello ladies,
thank you both for taking the time to read and for writing back.
I appreciate all your comments and suggestions.
Here is a bit more info - I did undergo an autonomic test - full 45 min tilt table test. My specialist - who I don't trust, but he's the only one I can see insist I have hypovolemia, he keeps telling me that he has proof of that - wish I know what that is as he is quite difficult to communicate with.
I did see 2 neurologists - none of which even remotely hinted at neuropathy since my symptoms (pain, pins and needles, itching etc) come and go, and I was explained that neuro symptoms do not behave like this, but rather are progressive.
I did have TONS of blood work - ESR - 1, CRP - low (can't recall either 3 or 0.3) anyways non indicative of inflammation, rheumatoid factor negative, liver enzymes fine, vit D was a problem in Jan, I'm taking supplements ever since and now it's within normal limits, vit b 12 normal, iron and iron binding capacity - normal, calcium, magnesium everything is picture perfect. If you look at my lab reports you'd be amazed - everything is by the book. Same with my urine tests.
I'm at a loss here. I've been to a lot of drs who dismissed all my symptoms as anxiety prior to finding this guy who diagnosed me with POTS.
At times I think he doesn't really know what to do about me anymore, as he doesn't seem to be able or willing to address any of the concerns I have now after being diagnosed. As strange as it may seem, I have worse symptoms now than before the diagnosis, I just learned how to cope better so I don't really show much.
I've even raised the question about my symptoms being caused by all the meds I'm on but the dr did not even want to hear that and completely disregarded my research (he even suggested I stop going online to read about the meds I take as it won't do me any good).
The worse part about my meds is that they all need to be tapered off so I don't even dare reduce or discontinue taking them as there are huge risks associated with that.
I guess I can ask for some more blood work to be repeated and go from there, as honestly I'm at a loss here.
Again, thanks for getting back to me.
I'll keep you posted if I figure anything out.
Blessings,
Alex

[laurab63]

Well, it *****, but many docs are still ignorant and not very compassionate when it comes to these illnesses that are not straightforward to treat.  I think they often take it out on the patient when they don't know what to do.  I can totally understand your frustration and worry about it all.Hypovolemia (low blood volume) is common with POTS.  Pain and tingling/weird sensations could also be from Chronic Fatigue Syndrome or Fibromyalgia (CFS/FMS).  Many people with CFS/FMS have POTS, hypovolemia, pain, fatigue/weakness, headaches, weird body sensations. I would go to one of the main centers, e.g  Cleveland Clinic, Mayo and be evaluated there for POTS and CFS/FMS. I have all of the above diagnoses (and many others that go along with all this :(.....  I'm not saying you have CFS/FMS, just letting you know some of these illnesses go together very frequently.

[alex74alex]

Hi Laura,
you're right, it does s*** to have to deal with ignorant doctors, but unfortunately we don't get to choose too much sometimes.
I doubt my specialist has any solid proof of hypovolemia in my case - I read about proper ways of diagnosing that and I had none of those tests - he's just speculating, plus he is one of those drs that likes to show off :-( but I'm stuck with him.
Going to Mayo or Cleveland is only a dream for now as $$$ isn't very good. My options seem to be quite limited, that's why I turned to this forum, in order to get to hear other people's stories/experiences before seeing another dr who would dismiss my problems but pocket his fees.
I guess the more info I gather, the better.
Thanks for your suggestions.
Alex

[dawnsc78]

I have been diagnosed with POTS and I struggle with terrible pain as well. Sometimes it feels like my bones are aching. Sounds funny, but so hard to describe the level of pain. The doctor called it a fibromyalga (fibromyalgia) pain. He said it is not uncommon with autonomic disorders. I have been referred to a rheumatologist to get treatment. I am crossing my fingers it helps. It is horrible, and keeps me from so much. I have missed several outdoor events because I simply cannot walk due to pain and exhaustion. I would cal your doctor, they may get you in sooner or at least give some possible ways for pain management. Best of luck

[sjklkuv]

I have had fibromyalgia and also CFS and now POTS. Alot of my pain is due to the Fybro. It is a wide spread pain and can be hell to deal with. I have been seeing a wonderful Doc that is all holisitc and has made a big differance. his name is Dr. Bowersox and he is in Cleveland. He has written a book about fybro. POTS is hard to deal with I am lucky that I am still able to work and have a decent life. It does affect me but it is not all I am about and it isn't as bad as having a disease that will kill me.

[CHRISTYDRAKE]

My daughter has everything you are describing.  She has not been officially diagnosed with POTS, my son has though.  She has pain from the bones and mucsles, trouble breathing, etc.  She has an appt with my son's autonomic specialist in October to get her diagnosed.

What interests me in your first post, was the itching.  Because of the itching symptom my son has, he has also now been diagnosed with MCAS.  Have you looked into Mast Cell Activation Syndrome?  Many people with POTS also have MCAS.  The doctor said my son's POTS is secondary to his MCAS.  The POTS is a symptom is more of a symptom of MCAS.  It might be something you might want to research, many of the symptoms overlap from MCAS to POTS.  It is hard to diagnose, the testing must be done properly, so we took our son to a specialist to get it done correctly.

Christy

[CHRISTYDRAKE]

My daughter has everything you are describing.  She has not been officially diagnosed with POTS, my son has though.  She has pain from the bones and mucsles, trouble breathing, etc.  She has an appt with my son's autonomic specialist in October to get her diagnosed.

What interests me in your first post, was the itching.  Because of the itching symptom my son has, he has also now been diagnosed with MCAS.  Have you looked into Mast Cell Activation Syndrome?  Many people with POTS also have MCAS.  The doctor said my son's POTS is secondary to his MCAS.  The POTS is a symptom is more of a symptom of MCAS.  It might be something you might want to research, many of the symptoms overlap from MCAS to POTS.  It is hard to diagnose, the testing must be done properly, so we took our son to a specialist to get it done correctly.

Christy