More medical stuff...not good-not just POTS

[blackbirdsings]

Somebody on here said it would be helpful for me to post and see how everybody deals when faced with some challenges I am going through right now.

I have been having trouble since the summer, and its not just POTS. Dealing with doctors has as usual not been going well. I am going to a major medical center in the next week or so, the local doctor doesn't know what to do with me and ends up just being rude.

I was loosing lots of protein in my urine and a few weeks later I began having tons of edema. It is painful, and hard to do outfits and clothes-have to get creative. Sometimes my legs all become the same size from the thighs down. My heart, kidneys etc are all fine. Compression hose does not work on me :-( I am having extremely high levels of pain, and its not an injury pain, arthritic pain, surgery pain or anything like that. It is actually far worse than a broken bone etc. We have realized all my lymphs are very enlarged and in all of those places is where my pain is so horrible. It is very hard to get doctors to treat the pain and some do not understand why advil doesn't work. What do you do when faced with something like that? I know treating the cause of the pain would be best, but they haven't figured that out yet.

Now my bloodwork is coming back abnormal. The red blood cell count is too low, a lymph count is low, many things going along with the red blood cell count is too low, also the globulins are low but albumins okay...but the ratio of those two is too high. Has anybody ever had this before?

I keep loosing weight, most food makes me very ill and nobody has given me anything to help with that. What do you ask for in that area? They actually ask my family if I eat and we keep explaining I do, but an upset stomach doesn't help matters. I need to be able to keep the food in me.

I also keep getting sick, it is as if it is too much for my body to fight off infections. I supposed that would make sense with the recent bloodwork. Just got over a sinus infection than got a flu/cold thing that was horrible. I am having to take a low dose of sudafed as a decongestant. The downdside to that is it makes me faint even more, which just wears me out even more. Are there any decongestants you all do well with?

Any thoughts, advice, suggestions are welcome. I am not fond of going to new doctors, since I have had so many bad experiences. Really hoping this one will be excellent and can help make me better. Just POTS is more than enough, this is just ridicolous now. Very worn down, not able to do much at all, but managing to keep doing what I can.

Thanks!

[tammyokc]

Hi, I'm sorry I can't offer any suggestions, as we are all so different as to what we deal with, so I'm in hopes someone else can elaborate on your physical symptoms. I think it is very wise that you are going to a major medical center. We can offer some advice on this site and help and pray but when things seem to worsen like you say your symptoms have, it's so important to go to your doctor or a new one at that! I will be praying for your upcoming appt. As for decongestants, I stay far away from them even in misery because they make my heart race even more out of control. Keep your positive attitude, it is key, and as much as these doctors seem to devastate us more most of the time, keep your hope alive that you will find a keeper. Keep us posted.

[blackwolf]

Dear Blackbirdsings,

Welcome to the site. First I must say how I love name you chose.

Second the swelling, sounds like your lymphs have stopped pumping out the extra fluids in your legs, have you tried massage(very painful, but helpful). I have some extra swelling in my right arm(not as bad as you) that I have managed to keep it down by massage. Start at the foot/hand and slowly work up the limb. My hubby does this for me every few days, sometimes every day. The other thing I can think of is compression bandages. They are like extra long wraps, but usually only available in medical supply stores, and often you need a script from you doc, and you will need to learn how to put them on. And of course, the elevation, keeping them level with your heart for several hours a day.

As to the pain, have you tried neurontin, it has given me so much back to my life since starting it. Most docs seem to think that Advil and even Aleve are so great, but.. do they really work for us?

Ah, the wonderful world of nausea. Very common, and most people are underweight. A few(like me) are over weight, excercise intolerance. Have you tried the food allergy test, ie. stopping everything but a few choice foods and slowly start adding times? Many of us have at least one, if not more food allergies. Check with an allergiy doc /nutritionist can help also. What have you tried for the upset stomach? Compazine is the only thing I can take, like most I am very sensitive to medication. There are some over the counter stuff to try to, peppermint, dramamine, if you can take it. There are several people here with the same trouble and can give you some suggestions.

Most people don't do well on decogestants and antihistamines so be aware of the side-effects, especially if you use a beta-blocker. I also am a fainter so avoid them both like the plague, even before the beta-blacker was added.

And now my favorite subject(NOT!! ) doctors, or the lack there of. Poor to terrible treatment seems to be our lot. It takes a long time to find the good ones, and when you do, harder to let them slip away. If you would like to share your whereabouts, someone might be able to point you in the direction of a good doc in your area.

Some people here also seem to be on a rollercoaster of illness, just can't seem to shake it myself. We refer to it as being in the POTSHOLE.

best of luck to you and my prayers,

balckwolf

[Guest tearose]

Hi blackbirdsings, glad to have you here! I am sorry you have these numerous symptoms and issues but you will soon see you are not alone!

Until you have a doctor who understands what it is you have, doctors don't know what to do someone like us! Just be sure that this place you are going to for diagnosis, has the tools to diagnose problems with the autonomic nervous system too.

You may have a few things going on at the same time too. Hopefully this "place" is a large diagnostic center. I have lymphedema and use the compression bandages that are mentioned by blackwolf. This did not come from POTS. I can't tolerate sodium though so it complicates my management of POTS. I can not take aleeve because my whole body swells and my lymphedema causes pain in the limbs effected.

I use a shake mix by Ross pharmaceuticals for problems with increasing protein. You should ask the doctor about what may work for you! You need good nutrition even while you figure all the rest out!

I can not tolerate nor do I use any of those decongestants that you mention. If I need to help my sinus open, I use rinochort on an as needed basis. Even tiny amounts of some drugs can be very dangerous so it is very crucial you ask before you take anything!

I think you must not let your self esteem be damaged by the poorly educated doctors you have encountered or will yet encounter! Please be pro active, be your own advocate!

I know that once you get the full diagnosis and find a doctor and build a medical advisory team to help you, you will create a treatment plan and you will have improvement!

best regards, tearose

[leah1321]

Have you ever had kidney infections? I have had a bunch and now permanently pee protein, blood and leukocytes. I also probably have Lupus (most likely have it). You might want to read about the symptoms of Lupus and see if they sound familiar. I think they might fit with what you are describing. Also, don't get scared by what I am saying- there are several types of Lupus, they are rarely fatal and those are a forty year illness with long periods of time in remission. Also, there are a lot of new medicines for Lupus that can put you in remission or at least can slow or stop the disease for a long amount of time. If caught early enough, then you might not ever progress and will only improve. That said, look up Lupus and other autoimmune diseases online.

LEah

[Richland acres]

Dear Black bird sings,

I am sorry to hear of all of the discomfort from the symptoms you are having. I would definately try to find a doc who will listen and help you. Its so hard to keep jumping from doc. to doc and then they think you nuts to do so, but stay strong and keep doc. shopping until you find one who will help. I would find a pots specialist and see if they could do an anti body test. This will help if you have the anti bodies they will know which direction to go in. If the anti bodies are there you may have tumors that are normally hard to find that could be causing the problems. It also could be your pancreus not working properly and that is why you keep loosing weight. A gal who I know that has pots just found out her pancrus was not working and has lost weight cant keep weight on even when she eats. She is 89lbs. They finally did the tests and found the anti bodies also in her, so she will be going for more tests to see where the tumors are.

There is so many things that can go hay wire with our autonomic system not working correctly. Being swollen as you say you are is not normal!! I know its painful too as I am the same way. Still waiting to find the cause myself.I get swollen when I am active doing dishes or some thing, assuming its the blood pooling. I did have pain with the compression socks, but after awhile the pain went away and it does help with the swelling. If you have anti bodies though you should not be wearing the comp. socks, so get the test first.

Best wishes and sending good wishes your way for relief from the discomfort,

Brenda

[blackbirdsings]

Hi everybody, thank you so much for all of the replies, support and suggestions :-)

Tammy-After reading what you and everybody else said about decongestants I think I am going to go back to staying away from them. I think it added to me feeling worse, especially since the decongestant was cauing increased syncope. Blackworld mentioned people having more trouble with decongestants if they are on a beta blocker. To add to things, none of the beta blockers or other medications have worked for me. So I am on nothing for the fainting and have to control it the best I can. I will do another post about that...

Blackwolf-Glad you like that name! I normally do one massage a week and find that helps more than just about anything. It will help calm a little of the swelling and pain down briefly, but it comes right back in full force. I also do pilates and the combination of the two help. I haven't had my massage recently due to being away on medical stuff. I can really tell a difference and can tell not having a really good massage is problematic for me. I had somebody massage me while I was away and did not benefit from the massage, and it hurt horribly the entire time. I am really small, and smaller lately, so I need a light but firm touch. This person didn't understand, so I switched to somebody else and it went much better. I will be glad to have an appointment with the massage person that works so well with me.

I've done compression hose with no luck but not the wraps. I am going to ask about those. The odd thing is that if I am doing badly even laying down, legs up or on my side, the swelling doesn't always go down. Somtimes it takes days and days of solid rest for it to calm down, and even than it doesn't go down all the way. I agree with the lymphs not pumping fluid correctly. I also think there might be an osmolality problem due to the proetien excretion and the globulin/albumin ratio being off. I have no idea what they do about that.

Neurontin, I tried and was allergic to the med, and had a bad reaction to it. Advil only works on me for temperatures, and muscles soreness related to sports stuff. Doctors don't always get that we don't respond like most patients.

I wrote down the name of the medicines that might help with nausea. No doctor has agreed to put me on anything for the nausea or the upset stomachs. They really just ignore that it is happening and tell me to make more of an effort, which is just ridicolous. I found some candied ginger that is organic-it helps some but I have to do it at the first sign of nausea, otherwise its too late. I am going to push being put on something for the time being, because I think it would really help me be able to eat more, and my body really needs the nutrition.

Tearose-I will be going to Hopkins. They are sending me to an internist so he can coordinate the other doctors and send me to the other specialists. He is supposed to be very good. Doctors at Hopkins have been familiar with POTs in the past. I also wrote down the name of the shake you use for added nutrition. I do fairly well with liquids, so a shake sounds good to me. I have been concerned about not getting enough nutrition lately.

I know that once we get a doctor that will really work with me, things will greatly approve. I get very annoyed with so many doctors being horrible to me about the fainting and rare things going on with my body. I had one a few weeks ago accuse me of it, and throw a fit that I was going to go elsewhere for medical treatment even after they said they didn't know what to do. I think its just knowing I might have to go through yet another jerky doctor that bothers me. My family and I have decided that when we know what is wrong and I am treated, we are going to ask the doctor to write a letter explaining what was wrong. Than we are going to send it to the doctors that have been so horrible to me. I am glad that I have doccumentation from NIH stating that I have POTs and syncope. Nobody has argued with that letter yet.

I am learning how to really stand up for myself and be an advocate like you say. It can be really hard and frustrating, especially when you already don't feel well. I always take a family member or a friend that knows my medical things with me. Doctors don't always like it, but it is my life and my health not theirs and I have the right to demand medical care and to not be treated horribly.

Leah-I haven't had any kidney infections before. When the protein levels were so high I was doing tons of sports. The doctor decided to ignore it and said some young athletes have the protein loss. This was right before major problems began. I now know if anything comes back funny to push for more answers before something gets really bad. I looked up Lupus. I have some of the symtoms. The basic bloodwork for that had been done on me and was okay. So a bit puzzling, but I will bring it up with the doctor. Some of the medications they use sound like they might help me, and at this point it might be worth a try.

Brenda-I have been to so many doctors and many of the will not listen to me and if they have to work on it, they don't seem to want to dig deeper. I am glad I will be going to a major medical center, because it seems as if there will be many resources there that could help me. Hopkins has a pediatric Pots dr that has done a fair amount. I could no longer see him because I am over 18, but I think they could easily bring him in on treatment plans. My anti body tests have been normal so far. I need to look back at several of them to see if there has been any change in them over the past few months. The rest of my bloodwork has changed so I would assume that might have too, but I will check. I had not thought about the pancreus problem and will ask for that to be checked. I am a little over 100lbs but the edema is adding weight to me, so we aren't sure how much I really weigh. Good luck to your friend! I hope they get her better very soon. I agree, this amount of swelling is not normal. I have had several doctors say that I have a body image disorder and maybe I'm not really swollen but think I am. Insane! We had a fit and I no longer go to those doctors. They didn't want to look for a reason and one also said to just ignore it. Not responsible to say the least.

Well this has been a very long post. Thank you all again and I will keep you updated!

[steph37822]

oops

[mom4cem]

Hi Blackbird,

So sorry you are feeling so poorly. This might not help at all, but I remember when I was working in an OB/GYN office, we had many patients who spilled out a lot of protien in their urine. I even had that for a while, dr. told me that in my case, I have a pretty high metabolism, and I go through periods where I am naseaus, can't get anything down, so my body starts to break down muscle etc, to keep going and it spills out into the urine. When I had bad naseau, the gi dr. gave me reglan, I am a bad person when it comes to taking meds, but I know many people who took it and it helped.

It is frustrating, depressing and darn tiring to keep the search up to find someone who is willing, knowledgable to take on all we go through. I have not found anyone who believes in all the symptoms/syndrome that goes with us. So I go to a dr. here, one there, and hope the combo will help. Half of my mangement comes from me, getting info from others like you all who are going through this too.

I know this has not helped much, but I hope you can get this under control soon and feel better

[Laura]

Hi guys! I was wondering if you get over the counter Gravol (dimenhydrinate) in the states? My sister is living in New Jersey, and recently both her kids had a very bad stomach flu which kept recurring over three weeks. She went to the apothecary to pick up some Gravol, and they said they had never heard of it and offered something called coke syrup. I thought that was really weird so was curious to find out what you make of it. Oh, in case you don't have it, it's used for nausea, vomiting, and dizziness. When I am desperate, I will sometimes take 1/4 of a tab. Usually works pretty well, but makes me very sleepy. Thanks for any input! Laura!

[blackbirdsings]

Me and POTs meds...I have literally been tried on all of them and sadly none of them worked, inclduing one really bad reaction (beta blocker). I have been told I have POTs BUT my autonomic nervous system/sympathetic is all healthy. The specialists say I present with POTs but its not true pots...it's caused by an underlying cause that makes a chemical problem, causing me to have Pots. How confusing is that?!? I am now wondering if all that is going on with me is what is causing the POTs and has just now gotten so bad that it is showing up. I am really not certain, but would be content to just have the stuff going on now cleared up.

Steph-Doctors say my blood volume is normal, but one said he would be interested in further testing but nothing ever came out of that. I am very interested in the Procrit injections. They sound like something that might really be able to help improve how I feel and daily functioning. Especially since my red cell counts are currently too low.

I tolerate pills well, but a few weeks ago I had a horrible time with an antibiotic. It gave me horrible heartburn/acid (I now understand the people on ads for the meds that help with that!) and my body had trouble digesting the capsul. I hadn't ever had that happen before. I will bring up all of the nausea medicines you listed with the doctor. Are the thigh injections painful? I know how to do shots in arm (fatty part) but haven't done one in my thigh before. Nurses tell me it hurts less in the backside, but those have hurt me horribly-not sure why.

I will see if I can drink the carnation or ensure. That would be a huge help. I can usually tolerate a Starbucks Vanilla Bean, but that is kinda expensive to do all the time, and not something I can easily do throughout the day. Today I got a little more food in, but it ended up making me sick

I'm glad you pointed out that a patient should not be in pain. I am going to bring that up and stand up for needing to be on something till this is figured out. I am on something now, but the doctor I have been going to is very rude about me continuing to have to take it. I used to have a doctor that said it was ridicolous for me to go around in pain and suffering. I just turned 24 and have been fainting since I was 11. It didn't get bad until a few years ago. I am not getting to do much these days, not been able to finish school, sports, work etc. Very frustrating and dealing with horrible doctors and the amount of them I have been to is just insane. I know from this website that sadly I am not the only one treated horribly by so called medical professionals.

mom4cem-Your post was actually helpful-thank you for sharing. My muscles have gotten abnormally tight lately and are not doing right. From what you said this would make sense. I am finding more and more I must tell a doctor what to check for, what is wrong and what I think needs to be done, otherwise most do not seem capable to do it on their own. I let them try but if it appears they won't do anything, I tell them what I want done. I don't like that I have to do that.

Laura-I am not familiar with the syrup you are talking about. Sometimes drinking sodas works well for me if I can get them down. Something to do with the syrup and carbonation. I typically don't drink sodas but lately have really been doing alot...for some reason my body is cravinvg them and I can get it down easily.

We should know tomorrow when the doctor will see me. I hope very, very soon. I didn't sleep at all on Saturday and Sunday morning was so congested I had to take something for it. Grrr...ended up in bed asleep/unable to get up until after 9pm. Not fun, will be glad to get better and not have this going on.

Thanks again for all of the posts!!!