I'm At My Frustration Limit...

[MightyMouse]

Hi all. This has been an exhausting week for me. Despite how forward I may come across over the internet, I struggle advocating for myself at the doctor's office. This week I had 2 major doctor appointments, which always take all my mental energy to ensure that my views get heard. Both of my doctors from this week (Cardio and Gyn) think now that I need to see a rheumetologist (one speciality I don't have on my team right now) b/c they think that's where we may find the answer about my right side hurting all the time, along with a wicked daily headache and persistent nausea--I also had a bunch of diagnostic tests to try to determine the origin of the right flank pain this week too--it's been since August that things have escalated and have taken it's toll on my attitude. I still have to follow up with my GI doc, but all those tests were normal.

In mid-November, I have to have Gyn surgery to address some bad cell changes in my paps and to see if we can get rid of the tissue that seems to be causing problems. I'll be in the hosp for this one and sleeping peacefully, thankfully.

I'm so tired. My cardiogist appt was pretty good, but I'm having runs of svts and we talked about adding a beta blocker, but b/c my health is currently not stable, and b/c of the risk of lowering my bp, we decided to hold on that for now. Also, I have an echo scheduled for Feb to take a baseline measure of my aortic root b/c of my collagen disorder.

I'm feeling frustrated about not being able to find pain relief. At this point, I don't much care so much about finding an "answer" to the source of the r-sided pain, just want some relief and a solid, restful night of sleep so I can function better.

[firewatcher]

((((((((((((((((Nina)))))))))))))))))))))

I hear you and understand completely. I am almost ready to give up looking for answers myself. It is all so tiring. If I have one doctor's appointment it takes such a mental toll that anything afterwards is out of the question. I don't want to see any more doctors, I just want to be "normal."

Relax as you can, take care of yourself and suck up all the love and support we can give you!

Jennifer

[Guest tearose]

Well, it is justified frustration. I wish I had an answer to at least help you with the pain. I am sure you have tried all you know. How about sitting down, pulling your MM cape over your head and have a good cry. Sometimes by acknowledging how tiring and endless the issues and management of our body is for us, is needed. I think that those endorphins that kick in during a cry offer some pain relief as well...so go ahead and let it flow. Take comfort in knowing you are in fact, somehow, going to once again stand tall and strong (even if it is for only a minute) and have some new answers and a better treatment plan.

With soothing wishes for you to have a peaceful night sleep.

tearose

[Mrs. Burschman]

I'm sorry, Nina. I wish I could take away your pain. Nothing's worse than hurting all the time!

Just know that we're here for you.

Amy

[MomtoGiuliana]

Wow, sounds very hard. Being in pain or sleep deprived are difficult enough--both at once is a lot to handle.

I am thinking of you. Hope you can get an answer soon.

[EarthMother]

{{{{{{{{gentle hugs}}}}}}}}

I am so sorry for all that you are going through. The pain you have written about recently and sleepless nights seem so hard to bear. Your post tonight reminds me just how human (and fragile) each of us are within our healing journey. The strength that we each seem to find at the end of the day when we were certain there would be nothing left of us is beyond imagination.

Indeed if it were not for my dear fellow POTS pioneers, I am certain that my own spirit would be hopelessly lost.

Lean on us. Place your head upon our shoulder and hold our hand tight. We are here for you and sending you light and love when you need our support. We walk with you, and whisper in your ear that you are never alone.

Deep bow, Ms. Mouse.

[erikainorlando]

Perhaps they can just give you some pain meds in the meantime...I just hate being in pain and am so much of the time. This is a lonely tiring road at times. So frustrating to be so ill with hardly any answers. This forum has literally saved my sanity (altho some may disagree).

I feel for you and want you to know your persistence and courage help me so much. Hang in there...we all are with you in spirit. Erika

[potsgirl]

I can somewhat relate to the pain and lack of sleep issues. I have a chronic pain issue, and it certainly interferes with my sleep. What a gift a week of good, solid sleep would be! Are you taking any meds for your pain? When mine gets to be too bad, I take .25 mg of Percocet during the day that lasts into the evening. It really does help a lot. Nothing else touches the pain, but the Perc does and is also relaxing.

I'm hoping that answers come quickly for you, and that you can put this period of your life behind you soon. Best wishes & hugs!

Cheers,

Jana

[kayjay]

Nina, Just wanted to let you know that I am thinking of you and you are not alone. A few days ago i told my father that I just wanted to stop taking all my meds.

Chronic problems are exhausting.

Please let me know if you ever find a cause for your right-sided flank pain. i have had this for years and no one knows why... but I could push on my right side back and make myself vomit- if i wanted too.

I will be praying for your surgery. it sounds like you have great attitude about that but even minor surgery can be rough ( had a cyst removed this past spring- I was really worried). Anyway everything went well and it is so important that you get these gyn issues taken care of!

If you have to have general anesthesia- ask for saline to help keep you hydrated- this helped my HR and BP.

Anyway- hang in there! You can get through this rough patch!! Sending love and prayers your way- remember you are MIGHTY MOUSE not minnie mouse!- kari

[Dawg Tired]

{{{{HUGS}}}} MM! I am so sorry you are having to deal with all of this. Sometimes it feels like everything wants to attack at once!

Know you are in my thoughts and prayers at this time - enjoy the "sleep" you get during the surgery! (Well, that is always how I CHOOSE to look at it!)

[juliegee]

Oh Nina-

I feel your pain. I am sorry that this is going on for such a long time. You probably can't even remember being pain-free at this point. So many great suggestions above. You definitely need and deserve something to help you deal with this until the source can be found and dealt with. I question a rheumy as the doc of choice to deal with your specific problem....it doesn't seem to be arthritic, auto-immune, or musculoskeletal in nature??? To me, it seems to be a functional pain. A good problem solving internist, like House, should be able to get to the bottom of things- oh that it were so easy!

I am sending healing hugs, thoughts and prayers. My fat cat. Eli, sends love to your feline companions. Keep on fighting, Nina- you deserve relief and an answer.

So sorry-----

Julie

[Intuit]

Your symptoms fit the description for gallbladder disease - persistent flank pain, nausea, headache. Have your docs run a simple liver panel to determine if you have a blockage or chronic GB inflammation problem?

Even if they have ruled it out, I would look quietly for a second opinion on it.

[MightyMouse]

So far my liver and pancreatic enzymes are within normal range--my ultrasound and x-rays were both normal too. I don't have a gallbladder any longer though--so it's possible that there's something wrong with my ducts or sphincters within one. MRCP or ERCP would be next but my insurance requires I go through all the other tests before they'll approve it.

I've been wearing my neck brace at night b/c I'm having arm weakness and tingling in my hand on the right side now... probably exacerbated by the fact that I've been helping Teri put our bathroom back together after she gutted it to the wood framing. We have most of the floor put in and need to finish that asap b/c Teri's having shoulder surgery soon.

I'm still hanging in there.

Nina

[mkoven]

HI Nina, Sorry to hear about all the yuck. I'm also not sure a rheumatologist is the way to go. If it is connected at all to your collagen issues, then a good geneticist, like Francomano, may have some ideas. I'm biased, as I haven't had luck with the rheum specialty. In the interim, can you see a really good body worker? I've had pains in the past that felt like organ-pain, but were myofascial-joint stuff gone crazy. I'd of course only see someone really gentle and really gifted.

[Intuit]

Rule #1: the easy explanation won't work if the organ in question has been removed.

Curious, I went looking again. I found this.

http://www.scoliosis.org/forum/archive/index.php/t-1350.html

Kinda sounds like the scoliosis - abnormal thoracic positioning - worsens the GERD/reflux - that would be your upper right quad pain. The right side weakness/tingling and numbness would maybe be a branching nerve pinch issue related to the scoliosis.

When I see a thread of folks who have similar background (scoliosis, GERD, and tingling/weak/numb extremities), I figure that there is probably two problems with a related cause - in this case, spinal deformation causing diaphragm compression with nerve complications.

Most unusual. Interesting case.

[MightyMouse]

I definitely have scoliosis...mentioned on every chest x-ray. I wasn't identified until I was past the age where they could brace me and fix it. I've had spinal surgery already 2x--both times were at c5-6. Long story, the short version is that my collagen defect may have impacted my healing process and my first graft collapsed requiring a redo with a graft from my hip. My worry is that if the numbness continues there might be long term damage. I already have diminished sensation in my fingers, and my feet from prior to my surgeries.

Michelle, you now have my very best massage therapist living closeby--I'll suggest you befriend her on facebook b/c she's amazing. As for Francomano, I had made an appt with her a few years ago, but wasn't in my insurance network--she sent me to a geneticist she co-authors with who IS in my network and in Philly. You may recall that was a fiasco--after 3+ hours with his team, but not him, came in for less than 5 minutes, told me I didn't have EDS, had to be some other bone growth and/or collagen defect, was certain I'd test positive it, and left the room without ever telling me what the "it" diagnosis was. (it was hypochondroplasia) I ended up testing NEGATIVE and back at square one. Offered me no follow up to figure out what was going on. I didn't even get a final report! I *might* go see another genetic doc if there's a reasonable shot at getting some suggestions that will lead to relief of any kind--but I can't afford the $$ to see Dr. F. We're on a super tight budget; maybe when things loosen up a little and I can save some of my money from my night time teaching job.

I scheduled an appointment for Fri with my GP to try to get this ship going in a good direction. Right now I'm just bobbing around with my engine stalled. Uber frustrating. Okay, my wah wah wah is done for now!

Thanks, all, for the good ideas and suggestions. off to bed