Life in Pain: Waiting for Closure

Life in Pain: Waiting for Closure

There are so many things that I used to take for granted.

The other night I was able to have Steven take me by wheelchair out to the back porch. It was the first time since this whole mess began that I was able to see the stars. They were unbelievably beautiful, and came complete with an almost full moon.

Sitting out there in the fresh air was amazing.  I’ve really missed moments like that.

Amanda Siebe

Amanda Siebe

Right now I’m stuck in limbo with my treatments. I’m still waiting for everything to get approved in order to start the Complex Regional Pain Syndrome (CRPS) rehabilitation program at the Rehabilitation Institute of Washington. I am really hopeful that once I’m able to start the program, I will be well on my way to remission.

Every day is a battle with this condition.

I’ve been dealing with severe, debilitating nausea. It has been difficult to keep down more than popped rice crackers and Powerade. On top of that, I’ve been having my first migraines in years, and chronic constipation. It has been unbelievably miserable.

Originally, my goal was to wait until I started feeling a bit better to write another article, but I finally came to the realization that it is possible that I will not feel better for a long time. Writing has been my one release throughout this whole experience, and that is not something that I want to lose.

For the first time, I’m very happy with the doctors and care that I’m getting. I have a doctor strictly for my pain management, and a doctor for all of the side effects of the medication and other symptoms of CRPS that I have. This is the first time that I have not had to go to the ER to get treatment. It has been a huge relief.

One of the new things that I have had to deal with is the start of pressure sores. I’m really lucky that they are not open yet. I get the opportunity now to try and get them to heal before they turn into a bigger problem.

Unfortunately, I have not been healing well either. It seems every time something starts to get the slightest bit better, five other things get worse at the same time. The pressure sores are pretty painful, but nothing compared to the pain in my legs. Right now, my whole focus has been on staying healthy enough to be able to start the program the moment it is approved.

I have put so much faith in this program working. I’m going to be crushed if I’m not in remission by the end of it. Even if I reach remission, I’m going to have to be careful for the rest of my life. If I don’t, well then at least I will be able to adjust.

I just want to know for sure. I would love to have a firm and definite prognosis. To have some sort of closure on a disease with no end is a strange thing to want. But it’s the only thing that keeps me going forward.

Amanda Siebe lives in Seattle, Washington with her husband and son. She writes about her daily battle with chronic pain and CRPS in her blog “Life in Pain.”

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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There are 10 comments for this article
  1. Patti at 10:52 am

    Amanda,
    I hope you have more “stars & full moon” experiences to help lift your spirits.
    Chronic pain and the many agonizing symptoms and deficits that go with it takes away so much from our lives and it’s often the ‘little things’ that help us cope.
    Best wishes.

  2. Devin J. Starlanyl at 11:20 am

    It is true that CRPS is not the same as myofascial pain due to trigger points, but all chronic pain conditions have a myofascial trigger point component that is treaatable. It has been the experience of many of my friends as well as my own, that when the trigger points are appropriately treated, microcirculation improves, the nerve and blood vessel entrapment is minimized, pain is lessened, and the CRPS improves. It is then easier to treat that which is left. I pray for healing for you and for all of us in chronic pain.

  3. Stephen S. Rodrigues, MD at 10:49 am

    At all, esp Wendy. There is a textbook you need to get Called Janet G. Travell-Simons’ Myofasical Pain and Dysfunction. I have been using that as reference x 15yrs. It is the BEST clinical textbook. (IMO). Travell-Simons’ spent a half century uncovering the mysteries of medicine. Modern doctors have totally ignore the information and this has caused an untoward amount of misery. Myofascial dysfunction can masquerade as many traditional medical illness, the key is all the tests, scans and reports are normal. The obvious logical next step is to implement MF therapy which will begin the healing and if the symptoms dissipate you can conclude it is myofascial in origin. http://www.amazon.com/Myofascial-Pain-Dysfunction-Trigger-Manual/dp/0683083635/ref=sr_1_1?s=books&ie=UTF8&qid=1374686262&sr=1-1&keywords=travell+and+simons%27+myofascial+pain+and+dysfunction+the+trigger+point+manual

    Myofascial Release therapy can do no harm. NONE … Actually NO therapy will do a lot more harm. As time goes by without treating the tissues, the muscle fibers will become more dense, tight, stubborn, achy and will alter the cellular structure of the associated cells, nerves, fibers and lymphatics. This altered muscle will not operate correctly, will not process medications correctly, will not allow peace. Conundrums in medicine are mostly related to this issue. You’ll wish your were dead. Once this happens, the amount of time and effort in therapy will double or quadruple or take years to restore.

    @Wendy, I am not sure who you are or who has influenced you medical acumen but once you get a copy of Travell-Simons, turn to page 37. (read the entire chapter 2, too). Then we can have an intelligent discussion. While you are at it Get a copy of Edward S. Rachlin, MD http://www.amazon.com/Myofascial-Pain-Fibromyalgia-Trigger-Management/dp/0323011551/ref=sr_1_1/178-3970796-8789005?s=books&ie=UTF8&qid=1374686232&sr=1-1

    Here is a reference for laypersons: Devin Starlanyl http://www.amazon.com/Fibromyalgia-Chronic-Myofascial-Pain-Survival/dp/1572242388/ref=sr_1_1?s=books&ie=UTF8&qid=1374686334&sr=1-1&keywords=starlyn+devin

  4. Amanda Siebe at 2:36 am

    Dennis Kinch: You said it the best. That is why we go through hell, so that in the future people will have it a little easier. It is amazing how far treatment has come just in the last few years and how much further it has to go. It is pretty amazing.

    To everyone: Thank you for your support. I really needed that today!! Thank you!

  5. Rainey at 12:13 am

    Good Luck Amanda! I hope the CRPS rehab works for you, and you are able to move on with your life. Thank you for sharing your story.

  6. Wendy at 8:23 pm

    I just saw the Stephen Rodriques, MD posted information totally irrelevant to CRPS. It infuriates me when someone with a medical degree confuses medical problems and offers cures that won’t work because they address a different problem.

    CRPS is not myofascial pain nor is it fibromyalgia. Both of those are painful conditions that pale in comparison to CRPS. People with rare disorders have to guard against all sorts of “help” that at the very least won’t help and at the worst might harm.

    Best of luck to you Amanda and keep on with your plans. It sounds as though you have some hope around the corner.

  7. Wendy at 5:58 pm

    As a person suffering from another disorder with no cure (Trigeminal Neuropathic Pain), I understand what you are writing about and appreciate your writings. Hopefully the protocol that is “in the pipeline” with your insurance company will work some magic for you. If there is some residual, never give up — I have heard that there is research going on now involving stem cell therapy that, if successful, could help CRPS as well as TN in all its forms. I have my fingers crossed! Meanwhile, take good care.

  8. Joy H Selak at 4:55 pm

    Amanda,
    Best to you in your treatment. The yearning for a clear diagnosis and treatment plan is a yearning I understand. You seem very brave.
    Joy H Selak

  9. Dennis Kinch at 4:13 pm

    Sometimes there is no closure because we are the pioneers in the changes happening to the medical community. They are just starting to accept that these diseases exist and are actually diseases, not something “in our heads!” As pioneers we must accept our role, our path, our goal to help our children and grandchildren, should they inherit these diseases, have a better more understanding and helpful medical system to deal with their pain. Not too long ago there was no rehab for CRPS. Sometimes, all we have for now is our mental health, our true spirit, to get us through. When you looked at the stars you felt the freedom, the independence from the doctors and insurance companies and the system. Being happy and productive despite our pain might be the only salvation we get in this life as we lay the groundwork for the next generation. That’s why we sacrifice our closures and take up the fight against ignorance. I am determined that my daughter will never have to go through what I did. So get out more often, stare at the stars and the trees and all things in Nature, and keep fighting, if you can. And thank you.