Tuesday, December 26, 2017

The new doctor.... optimism? I'm trying.

I'm beginning to start the awful and impossible mission of relating to this intractable pain as something that is not going away. Because it's not.

The obgyn Dr. Mashiach said that it is clear to him that the pain is not from the fibroids. He wished he could tell me that he can fix me, but he sat at his desk and said he can't help.

Nobody knows what the problem is.
It's possible a nerve entrapment syndrome is what is happening. Just Google "abdominal cutaneous nerve entrapment syndrome" and you will see what that is. All the articles give ways of diagnosing the problem, and treatments. The treatments usually involve some sort of medicinal nerve block injected into the nerve/s involved.

It could also be a problems with adhesions. Adhesions are internal tissues that, because of surgeries and inflammation, cause organs to stick together and not allow for free movement of tissue, thus causing pain.

I started seeing a doctor who is an MD, and is involved in osteopathy as well, and has devoted much of his practice to the study of pain, neuropathy, and what is called "functional medicine". He integrates mind/body to heal. He thinks he can help me. I had one treatment, and although it didn't help the pain, I am willing to give it more time. He is using osteopathy and gentle massage to loosen the adhesions. But we're not sure if that is the problem. It likely is part of the problem, because adhesions form where there were surgeries, often abdominal, but there may be nerve entrapment also.

Both these disorders are treatable, but it takes a skilled practitioner to diagnose the nerve entrapment syndrome. And whether or not it can be treated without injections remains to be seen.

This doctor is more optimistic than I am, but he is the first doctor who is convinced he can help me. So I'll keep going and see how things go. He thinks I can get my life back. I hope he's right.

The more this goes on, though, the more depressed I am getting. I honestly feel my life is being taken away from me by this problem. (as if my life wasn't by and large taken from me already when I had to give up my careers). Having long-term pain is really really bad for the psyche. It makes me not want to get out of bed. Like ever. If it weren't for my kids needing me I probably would stay lying down somewhere all day because that is the only position I don't have pain. Yesterday I did a lot, and I was in pain constantly. I went with Shifra do the mall to get some errands done, picked up Azriel from school, made a big salad, tuna melts, and then a big pot of soup for the kids to have while I went out to parent-teacher conferences at Shifra's school. Then after all that I pushed myself to go to a friends house for dinner; she had a night with no husband or kids home, so she invited a few good fiends to dinner. That is the stuff I need to be doing more, pain or not. So I went, and it was lovely. I got home late, fell right to sleep, and slept about 12 hours. At present, I'm not in pain (I'm mostly lying down in bed with all sorts of pillows and my laptop desk), but I am conscious of the time- I have to pick up Azriel from school soon, then Shifra, then make food, then take them to guitar lessons and wait there for them, then come home and make dinner etc. You may be thinking why don't I just let them make their own food? They aren't babies, after all. Well, for starters, sometimes I do. Secondly, they have tests and homework, Azriel is practicing for his BarMitzvah and needs my help with that, and Shifra has babysitting jobs and lots of school work. If I tell them to make their own food, something else will have to go by the wayside, and it effects them heavily. They both play guitar and need to practice daily, and there is also an important aspect that they need social lives. The balance is sometimes so hard, I just wind up in a puddle of tears. As for the older boys, thankfully Dov is very happy in his hesder yeshiva, and is taken care of well there. He even likes the food and says it's abundant. Yay for that! Ya'akov is doing OK, staying in Jerusalem for school during the week and coming home every Shabbat. He sprained his foot the other day, and I was worried I'd have to go pick him up with the car because he can't walk on it, but it's not that bad of a sprain and he stayed in Jerusalem to finish out the week. Thank Gd he is in a good living situation as well, and enjoys school. But we got a call from the principal--- the call we were kind of waiting for. Things aren't perfect there, and they need to get us involved. As I said, we were sort of waiting for that call, we know what is going on.

Why am I detailing this all for you? Because I'm in pain any time I am on my feet. And I have kids at home with needs, and two away with different needs. Azriel wants new sneakers. Shifra needs new school supplies. That means I have to shop with them. It's always something. And I'm in PAIN. My body HURTS, almost ALWAYS. And there is no quick fix coming down the pipeline. My pain doctor (Dr. Z) recommended I start up on Lyrica again, but I am not going to yet. I didn't react to it well last time, although I stayed on it for quite some time. But this is different; different type of pain, and I am not on the other meds I was on last time I was on Lyrica. But I am going to give this therapy with the new doctor a try. Unfortunately he's an hour drive away for each treatment, and that alone puts me in deeper pain. I have friends and also family in the city where I go see him (Modi'in), and I may stay the night next time if possible, after the treatment.

Migraine situation is beginning to be unstable. I am still off the Topamax. My Homeopaths are encouraging me to try to stay off it. I had two medium-major migraines recently, but was able to treat them at home and not go to the hospital, thank Gd. Today I have a medium one as well-- I inadvertently ate food last night with a little wine in it, and wine is a huge trigger for me. The headache isn't too bad at the moment, and I took Excedrin (the only medicine I can take), so let's hope it doesn't escalate.

I soon have to do two MRI's- one for my PVNS hip and one for my swollen-of-yet-unknown-nature knee. Then we'll see if the knee has PVNS in it, too. I hope not. It could just be the arthritis. My hips are totally arthritic, so it's just a matter of time, I guess, that my knees would be, too. 

The new doctor (Dr. S) sees this all as one mechanism gone awry. The chronic inflammatory process that was started sometime in my past; exacerbated or caused by the NF, it's all one thing. The PVNS, the migraines, the fibroids, the arthritis, the belly pain. On the one hand, I should be able to look at it positively that he thinks we can make me better. But my reality is that I sometimes want to die. It's just Too Much to live this way.

I don't really want to die, I am completely alive, and last night I was laughing, telling stories, and as alive as can be while hanging out with my girlfriends. I loved that, I felt alive again. But the pain took over. I just tried my darndest not to show it.

I need hope on a daily basis that I will soon be out of pain. I don't want to take Lyrica- it made me dizzy, brain foggy, and sleepy always. But it does help take pain away. But if your quality of life is so downgraded because of side-effects, what's the point? You're trading what for what exactly?

I can't stand this pain much longer.... I say that a lot, yet another day comes and I am again standing the pain. But I hate it. And I don't want life this way. But I want life. But not like this. But I want life. But I want to die if the pain is going to keep being this way. But I want life. But the pain is intolerable and impossibly tolerable all at the same time. I can't. I just can't stay in this kind of pain! God please help me!

You see where I'm at?


  1. I'm sorry - I get where you are with this, or at least a little. Living with constant pain is no way to be :-( I hope the new doctor figures something out. At least my pain didn't go away from lying down, so I was still able to get out and do things. Knowing you'll trigger pain by living your life must be a rough place to be!

  2. I'm sorry for the pain you feel. Your'e not alone in this crazy space of feeling pain that is impossible to describe to a Physician, and just as difficult to find a treatment plan.

    My NF journey has been similar to yours... tissue, nerve, and tendon damage on both my arms and hands, sepsis damage to critical organs, a 6 week journey to diagnose Vasculitis, and now... pain management. Gabapentin and Lyrica have not helped... just made me dizzy, slurred my words, and has made it incredibly difficult to focus on any task.

    As I work thru the doctor referral process, my next appointment is with a Neurologist to talk about the three distinct levels of pain I feel. I am writing down the details of each level of pain... as it is often hard to say the words so the doctor understands. My wife is coming to the appointment with me to help with the words.

    I'll follow your blog and your progress with the "functional medicine" doctor.

    My best wishes to you and health.

    Russ (NFF Facebook)

  3. Living with pain like that must be an aweful reality. I admire your not giving up. I wish I could help you and I pray you will find some way to live, deal with this or overcome it. You are loved. I wish you the best this new cycle starting. I hold you in my heart. Shu