Pain And Pots

[Becia]

My family calls me the accident prone Potsie, because I pass out so often, and it never fails, Becia ends up with a "boo-boo", per the words of my 6year old niece. I just recovered from a sprained hip, and last Sunday, ended up with a bad out moment (those where I cannot move afterwards), and sprained my shoulder.

With my hip, we were afraid that I had broken it or dislocated it, so I was transported via ambulance to the hospital. With my shoulder, we were not sure what the heck it was going on, except for lots of pain, and I could not move it, but I couldn't move any of my limbs when I come out of those types of attacks. The next day, we all looked at it and decided, lets go to my normal doc (not the one who diagnosed with pots), and have here check it out.

We all know that narcotics can make POTS symptoms worse, but in cases like this, where I'm obviously screaming in pain, passing out because of the pain, and the pain is setting off other pots symptoms (like neuropathy, which I struggle with anyways, but extra pain makes me extra sensitive), what can we take? I was given Tramadol for my hip, and what I requested from my doctor for the shoulder, because I couldn't tell it was making the symptoms worse, I still pass out an alarming amount every day, and still live with the lightheaded see and dizzy.

I'm allergic to anti inflammatories, so I've basically been stuck with Tylenol in large doses for everything, because my general doctor doesn't want to treat me anymore because of the pots. I really think its because she doesn't know much about the syndrome, but it also sounds to me she just doesn't want to listen and learn. I had one of my roommates in the room with me because you touch my shoulder, I scream, and end up out, and she was apparently having to educate her as to why I was passed out. The doctor just couldn't understand why and apparently, never did. When she called me back to review the x rays, she told me I really just need to stick with my cardiologist for things like this. Yeah, the heart dude is gonna fix the shoulder, yeah, right on that.

The Tramadol is helping with someof the pain, I can't tell the pots is worse because of it, because like I said, before, I am really having an issue getting mine regulated. I see my cardio dude tomorrow for a two week follow-up, and am nervous to sees what he says, because I know I don't trust myself in this situation.

What can a Potsie do?

[trice125]

Get a new primary care doctor that is actually helpful.........I stuck with my old one way too long and can't believe the difference between my old one and my current one. Other than that I don't know what else to tell you, sorry.

[Becia]

The search is indeed on, for a new gp. After we got that response from her, we are all looking for new docs.

[issie]

It sounds like you may have EDS. That makes us a bit clumsy and accident prone.

Issie

[Katybug]

Becia,

I'm sorry this is happening and your doctor was not helpful. I would imagine this is hard to hear, but, if you are passing out multiple times a day without enough warning to sit or lay down to prevent secondary injuries, it may be wise to start using a wheelchair, a shower chair, etc. to prevent the secondary injuries until you can get your lots under control. It might be hard to imagine but your injuries haven't been serious yet. You could end up with a serious head injury in these situations and that's the last thing you need. Just some food for thought....I'm rooting for you. Tylenol is my friend too.

[Becia]

It's all hard to hear Katie, its okay. My friends and family know I'm extremely stubborn, and sometimes I need to fall flat on my face before I ask for help. We have talked abut wheelchairs and such, and I do use them when I'm out and they are available, as well as a shower chair in th bathroom. I see my doctor today for a follow up since I've started the fludro cortisone and will be discussing this further with him. I don't have much hope though, as he kept telling the people I live with I was fine when I was having seizures from a other medication. We shall see, I'm taking one into the office with me, and she's got lots of questions for him if I cannot ask.

I don't know much of EDS... I have joints and such that hyper extend, but I always thought I was just flexible from yoga and such. Guess I need to possibly read up on that as well.

Another doctor is certainly going to be in the works. I understand around my parts I'm gonna have I education POTS to whomever I see, but if they are not willing to learn themselves, it's pointless to give them my hard earned money. I wasted my last $75 on that doctor, just to be sent away. I still cannot move my shoulder without immense pain, and that alone sets off more problems, I cannot handle.

[looneymom]

Hi Becia

Hang in there. POTS can be an ugly beast. However, a wheelchair may need to become your best friend for a while until your doctors can fine the right medications for you. My son finally got his wheel chair this last April. He was using a manual wheel chair but could not push himself around in it. So I had to fight five months with insurance to get a power wheel assist wheelchair. It was well worth the wait. However, if a wheelchair will prevent other injuries, it will be worth that piece of mind. For the shoulder pain, have you tried alternating heat and ice?

As for doctors to help treat you, you may have to shop around. It would be helpful to find one that knows what POTS is. However, that is easier said than done. Our GP is not the best, but he is learning my son better because of our cardiologist. Our cardiologist did not know much about POTS in the beginning, but has hooked up with other cardiologist that do. So it has began to be a win win situation for my son. However, finding the right medications can be a pain if something underlying is causing the POTS problem. I would check out the EDS. There are medications to help with this problem. If you suspect a specific problem try to get to a doctor that specializes in that area. Hopefully you will feel like the appointment was well worth the money that you spent to see the doctor.

[Becia]

Follow up yesterday ended up with me and a wheelchair, so that will be arriving today. I'm trying to be okay with it, as I'm still resistant and learning how to accept help, but it was explained as "if you are out and about, you don't have to worry about hurting others around you, you just have to worry about yourself", and that put me at ease. i am so afraid of hurting other people, even though i know the people who are around me the most, can handle me and not hurt me further, but its still a thought in the back of my mind. It also stands the chance to get me out of the house more, as I still am not allowed to drive for another month at least.

I am alternating the Tramadol and Tylenol right now, but he did say if the pains were bad,or if I did injure myself again, Tramadol will be the thing for me to use for the major issues.

I didn't get to approach the eds questions with him, as I was passing out too much to really finish, and I hadn't given those questions to my friend who went with me. I think I might have a better chance approaching that with a new general doctor I am looking into seeing. Right now I'm taking everything extremely slow and easy, and lots of prayer that I don't fall.