Working backwards

I know this is working backwards, but here is an excerpt of an e-mail I sent my boyfriend today that really summed up what is going on with me right now. In my next post, I am going to type up my whole story of this nerve disorder from the beginning – can’t believe it started TEN WHOLE MONTHS AGO, in July 2009 – (a task which will also help me since I want to present this typed version to put in my file for my upcoming appointments)….

1.) My medical stuff….
So updates are – ON TUESDAY 5/18, I am going to see an orthopedic surgeon whose name is Dr. Kim. Although I have only met his PA so far, they have both been really nice and are really concerned about me so they got me expedited to the top of the list to see another neurologist AND rheumatologist at Kaiser to get second opinions. The neurologist is one whom Dr. Kim spoke to personally about me and specializes in strange nerve things such as this (he specializes more in the pain side of nerve problems rather than the loss of senstion/weakness/inability- to-move-muscles side that is characteristic of multiple schlerosis). I am taking Dr. Kim my MRI CD so he can actually interpret it himself and he is going to examine me and hopefully set me up with softer orthotics finally.
I am also getting an ultrasound on my ankles to see what the blood vessels are doing because my feet are turning purple now a lot.
Then in early June, I will see the new neurologist again.
I have already been diagnosed for sure with FIBROMYALGIA and RESTLESS LEGS SYNDROME (RLS) – which finally explains why my legs burn when I sit and why I can’t even ride in a car for 15 minutes without that burning feeling.
Right now, I think the main theories are as follows – (the possibilities – these are doctors’ theories, not just my own diagnoses FYI 🙂 )
a.) some kind of autoimmune or demyelinating disease affecting my nerves and/or joints
b.) Tomaculous Neuropathy –  a disease where your body is prone to nerve entrapments; usually hits women in the mid-20’s; you get pinched nerves in various parts of your body because the myelin sheaths (that surround the nerves and protect them) get destroyed and then your body inflames there and pinches the nerves—this seems likely but as I have said the test for it costs $1000 bones so I don’t want to do it yet
c.) Fibromyalgia – which is a condition where the serotonin is already messed up in your brain (as we already know mine is due to my depression) so that your pain signals are all intensified – causes pain in the joints, tendons, muscles; causes fatigue, foggy-headed feeling, depression, trouble sleeping, and RLS!!! and you get flare-ups of symtoms that are exacerbated by stress
——SO maybe the fibromyalgia is causing ALL the pain (kind of unlikely) or its INTENSIFYING the nerve pain symptoms that are caused by something else (fibromyalgia often accompanies other autoimmune diseases and does this)
d.) Something else entirely
Okay treatment options…
I see the treatment as being two-fold:
a.) Regardless of the reason for the pinched nerve symptoms in my ankles, I HAVE to get the RIGHT orthotics to protect the nerve from further damage and alleviate pain.
Once I do that, I think I am just going to have to BELIEVE that the orthotics are supporting the nerves/ankles enough to prevent further damage and know that its okay to walk and do what I need to do, even to walk my dogs again on flat surfaces. Yeah I won’t be able to run, but I won’t have to be afraid of stuff like walking anymore.
b.) Then I have to manage pain with medication. Again, I have to BELIEVE that the orthotics are supporting me and take the medication so I can do things and slowly start being able to do approved exercise again and just be reasonable with it but TRUST at the same time.
So the medications…
a.) Okay, right now I am taking LAMICTAL which helps with nerve pain, epilepsy, and bipolar disorder so I will keep taking that. I notice how much it helps with the pain each time I go up in dosage. And it is still helping my mood swings not be as wild.
b.) I am also just taking my Klonopin regularly each evening I get anxious (which is almost every day) and just not worrying about it because my new psychiatrist that I like told me to do that and I am trying to trust her.
c.) Right now I am also taking TRAMADOL, which works on opiate receptors in your brain but isnt nearly as addictive (although it is pretty kick ass and makes me consider switching my one drug to try from cocaine to opium….just kidding). This medication is used for pain (it really doesn’t help my nerve pain), fibromyalgia, and RLS (this is what it REALLY helps me with!!!) Dealing with my RLS is so important because it contributes so much to me feeling lazy/worrying about my feet which leads to anxiety which leads to my eating disorder so when it isn’t there (that twitching burning etc), I feel so happy, so relieved and sometimes I cry because I am so thankful.
——Along these lines, although I am really afraid of getting addicted to the Tramadol, I promised myself I would take it until I see the new neurologist and I got that plan ok’ed by my primary doctor. When I see the new neurolgist I will talk to him about the other RLS meds there are such as Requip and Mirapex (which are both Parkinson’s drugs) and about the nerve pain meds there are such as gabapentin (aka Neurontin which Emily is taking for her back right now) and Lyrica (yuck, no way because I am afraid it will make me gain weight). Also, I am taking Lexapro now but I might later on consider switching to Cymbalta (an anti-depressant which got recently approved to treat fibromyalgia and nerve pain) or Pristiq (same thing) since SSRI’s never fully work for me and these other two are the newer SNRI’s.
WOW!!! That is a lot of information, but it felt so calming to tell it all to you and to organize it in my brain. 
Basically, I am still a medical mystery, and honestly, I might always be, but I think getting the orthotics and the right meds and just accepting that that is how my life has to be now and doing the best I can is the best plan I have. I will just keep classifying it as a nerve disorder and try not to be sick of explaining it to people.


5 thoughts on “Working backwards

  1. so, its hard to get into…but i can kinda (kinda) relate to some similar stuff as u….small world (not all the same, but some common threads)…unfortunately i have only been able to walk the last year (no energy, and heavy feeling)…but kind lower end of weight and need to gain really…its all tuff (used to be competitive runner…all lost to me now)

  2. Although you have probably already had this checked, thought Id ask anyway, have you had your vitamin levels checked?? Esp the B vitamins like B12, B1, B6, B2?? While I don’t think low levels would be causing all your problems it couldn’t hurt to check. And I realize this post is waaay old, so I hope you are feeling better now! =)

  3. Do you think you might have lupus? It sounds like you have a lot of the symptoms. Either that or some other mixed autoimmune disease.
    Further to the above commenter about vitamins, vitamin D has been shown to improve symptoms for people with autoimmune disorders. In general, most people are vitamin D deficient, so if it is safe for you to do so, I would recommend it myself! I have been diagnosed with lupus almost 10 years ago now and am lucky to be generally pretty healthy. Now and then I get a dose of reality with it though.

    • I think a lot of what they are thinking is that I have some kind of mixed autoimmune disease like you said. I test negative for lupus last May, but I know a lot of these things take years to really show any diagnostic evidence on tests. It’s a quest. I am trying to get better at remembering my vitamins every day!

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