"Suffering the Slings and Arrows of Outrageous Fortune"

I like to think that I have toughened up over the years and nothing much phases me anymore. We have become fairly stoic after 5 years of dealing with the crap hand that has been dealt to us. I don’t panic much these days (well, not nearly as much as I used to) and nothing much surprises me anymore.

However, I am going to throw a little temper tantrum here before I get back to being calm, cool and collected….

So, this CRPS/ RSD deal. Pretty serious stuff. Potentially disabling and disfiguring. Everything points to the best chance of beating it, of achieving remission, is to catch it quickly. The quicker you treat it, the better off you are. The first few months are critical.

We finally got a  referral to Rheumatology. (At first we were going to be sent to Pain Management. I won’t go into details here but we sort of fired the Pain doc at Cincinnati Children’s several years ago so going back now was an unpleasant thought. I threw ourselves at their mercy, explained our issue and they kindly referred us to Rheumatology instead. So, that was one disaster averted.) I was finally able to make an appointment yesterday.

The first available appointment is January 29th. January 29th. More than four months away. We will be almost 6 months into the disease process at that point. Every minute counts but we can’t see a doctor for four months. And, there is the little fact that she is getting worse, day by day. The pain continues to spread. Now it is not just in all four limbs and her face and scalp, but in her stomach. Her insides hurt. Everything hurts. More than usual. She is getting skin sores, which are almost certainly caused by CRPS. Her sleep is awful. Her memory and focus is just gone. She is struggling to recall song lyrics and that is devastating for her. CRPS affects the limbic system and so can absolutely cause these widespread symptoms.

And, the kicker is that we don’t know if the rheumatologist will even have anything helpful to offer. I mean, they say they treat CRPS but that doesn’t mean they actually offer what Emily needs. Full body CRPS is a much more complicated situation than having it in one part of the body (which is plenty complicated). We need aggressive treatment to get ahead of it and, forgive my disbelief, but I do not know if Cincinnati Children’s will have the type of treatment we need. (I guess I am afraid they will just offer PT and biofeedback. Those will be part of the puzzle but they cannot be the only options.)

We see Dr. Neilson in October. I am hoping if he actually sees her and grasps how serious it is, maybe he can expedite things. Beyond that, I am trying to find another doctor who is familiar with treating CRPS within traveling distance that can help. Having a plan B will make me more comfortable – the thought of waiting for 4 months only to have to start over again is unbearable. But, apparently developing a Plan B is more challenging that I had hoped. (Incidentally, if anyone reading knows of a great doctor in the western Ohio, eastern Indiana area who can treat full body CRPS, please comment with a name.)

Emily is being a trooper about this. She is desperately trying to stay active. She gets up everyday and gets dressed. She walks and showers and plays with the animals and goes shopping or out to eat when we go. She doesn’t focus on the pain and is pushing on with life. But how long is she going to be able to do this without some relief?

How long can you maintain your regular life with pain levels that have shot up to a daily 9 or 10 and no hope of relief in the foreseeable future? She is doing everything she possibly can to hold it together but she has absolutely no help from her doctors and that is not right. Waiting even a month was going to be too long. Waiting four months is just not ok. Yet, our options are so limited. Finding a doctor who can treat this is harder even than finding an EDS expert and, at the moment, our best option lies with Cincinnati Children’s.

Yet again, we are at the mercy of an invisible foe and the medical system. You’d think we would be used to it by now, but, it is as frustrating and scary as ever. I am really trying to view this as just another mountain to climb but a little help from the medical community would come in handy as we start to climb.

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Comments on: "Moving forward with CRPS" (8)

  1. Beth, You and Emily deserve to have a temper trantrum, certainly. I think all of us who have dealt with these horrific health issues know the pain of waiting months to see professionals who may be able to help. Watching our kids suffer is the VERY WORST, and I’m so, so sorry you are going through this… We will remain eternally optimistic that she will beat this again. Very gentle hug, Diana

  2. cheryl said:

    so awful Beth so sorry. have u looked into Dr Hanna in Florida, think it is florida spinal institute in Clearwater? think ketamine might help if u have not tried if full body. we did ldn for 6 months and have had livable results but took time. hugs!

    also going to see rheumatologist next months so hope we both have helpful experiences

    • Ketamine is definitely on my list of possibilities. Chicago is closer than Florida for us, so that is probably where we would go, if anywhere. Although, at the moment, I can’t even imaging her being able to travel to Chicago! And, we have to jump through the hoops of getting diagnosed and seeing what treatment is available locally.

      Thanks for sharing that information though – I will file it away for future reference! Hope your rheumatologist visit is a good one!

  3. Mandi said:

    We HAVE to vent to each other.I have 3 children with EDS Type 3 with daily pain averaging 8-10+ for several years now. People don’t truly understand. Doctors just don’t get it. Waiting weeks and months, hoping the next “specialist” can help is a constant nightmare. The only relief we have ever found was for one daughter, a spinal cord stimulator implant that has helped relieve one of her major areas of pain. Then the pain spread. More waiting for insurance to approve a trial to extend the leads. Will it help the other two kids to try it? Overwhelming symptoms, constant pain, unending agony watching your children waste away…a temper tantrum is definitely a well earned indulgence!

    • Thanks!

      I am sorry your kids are in such pain. It is inhumane to let kids suffer like they do but that is the prevailing attitude. I hope you get your insurance approval for your daughter and that you find something to help the other two kids.

      It does help to know that we are not alone, doesn’t it? 🙂

  4. This is horrific! No one should have to learn how to handle this situation with ease. I wish every kid could have a Mama Bear like you for an advocate, or better yet, no kid had to worry about sickness.

    I am guessing you have thought of these ideas already, but in case you haven’t:
    1) Would she be eligible for a hospital admission for pain relief? It could get her instant appointments with people due to the priority status it would give her.

    2) You could write a letter to the rheumatologist/rheumatology group begging and groveling for an earlier appointment. (It sounds like you’re good at this based on how you got the rheum referral in the first place!) I have gone from a year wait to a month wait by bringing the urgency of my situation to the attention of the doctor. I would like to think the referral would do that for me, however it seems hearing from the actual patient has a different impact.

    • I don’t think she would be eligible for hospital admission, because she doesn’t “look” like she is in pain. And, going into the hospital would produce a lot of anxiety for us both, tbh. It is on the list of options, but, one I hope to avoid!

      Getting an earlier appt would be tricky. The way they do it is a multi-disciplinary approach – so she will see a genetic counselor, Rheumy and a PT. So, all three have to be free within a two hour period. I get it, but it is frustrating. And, rheumatology doesn’t schedule themselves, central scheduling does, so you don’t even talk to them. That being said, we see the geneticist in a couple weeks and I will ask if he can expedite things. I am not holding my breath but I can’t help but hope!

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