Fibromyalgia Has Gone to my Head

I saw a second neuroogist today.  She was kind and listened and asked me why I came to her.  I said I wanted to know if there were any other tests to do to see if nerves were damaged or if there were any conditions left to rule out.  She said no.  My MRI of my brain from April looked good, in fact, not remarkable enough to warrant surgery of any kind.  My pain is too atypical and therefore there is nothing they can do for me since I cannot tollerate the anticonvulsant medications they use to treat this type of pain.  She mentioned that she believes the condition going on in my head is Fibromyalgia, so to me that means chronic, neverending, misery.  I'm very sad at that thought but guess I have to accept it.  I told my husband I'm done with doctors now.  I'm not going to chase this any more. I'll just take the drugs that I can tollerate and maybe eventually I'll get some relief on my own.  He thought that was a good idea.  I can't really afford to pay these doctors anyway, so I might as well just stick with my primary care physician and let her prescribe the pain maintenance meds. 

This will be the last post in this blog.  I guess the only thing I have left to say is that I'm too young to feel this damn old :(

It's Been Quiet from the Doctor Front.

The radio frequency (rf) treatment was not approved by the insurance company, so I'm waiting until my appointment with the new neurologist on November 7th before I schedule any more treatments from the pain management center.  I think the rf treatment was a shot in the dark anyway and I don't really have many, if any, other options. 

In the meantime, I got my thyroid checked to see if the nodules have grown since last year, that's a negative.  One less thing for me to think about :)  Well woman visit went well, gotta go for an annual mamogram. 

My head pain is unchanged; still there daily and unrelenting at night, thank goodness for drugs that knock me out and ice packs to lay my head on. 

On a better note, my social security disability was approved so there's some financial help on the way. 

Sorry this sounds so down in the dumps. My primary care doctor added Wellbutrin and took away Nortriptaline to see if it helps with my mood.  Maybe I'll be in better spirits next time.

Physical Therapy for your Head?

I went to a physical therapist at Barnes last Friday, her name is Jean.  She's the head of the PT portion of the rehab program I'm going to.  I mentioned to her when I was there last Thursday that I really had a stiff neck and it was causing alot of occipital nerve pain.  I also mentioned that the physical therapist that did my initial evaluation said there wasn't anything they could do for me from a physical therapy perspective. I also told her that I was referred to someone outside of the Barnes clinic that was going to charge me $90 hr that I didn't have to spend right now.  Jean said that she could help me and scheduled me for a visit on Friday.

She did some mild stretches with my neck and scalp as well as did some pressure point work.  I let her know when it hurt but overall thought the therapy was helpful.  After a couple of days I can say that it did help with the neck stress, but I'm still having a lot of episodes of pain in my head.  Jean suggested that I start a headache journal on a daily basis so that we can review any progress.  I started one and hope it will help.  It has a diagram with a model of a head in several positions, so it lets me draw exactly where my pain is and then I write notes below to describe it.  I will try to keep this up and take it to the neurologist on November 7th. 

I'm scheduled for a radio frequency procedure on October 16th.  I still haven't found out if the insurance will cover it.  I need to check back with the doctor's office tomorrow.  Glad I have the whereabouts to stay on top of this stuff. 

A Bump from a Log? Post Concussion Syndrome?

Today I was watching snipets on the sports channel on athletes and how they became disabled due to concussions.  It made me think back to August of 2011 when I got a concussion.  I was cutting the grass around a Bradford Pear tree in our front yard.  It has low branches, which I knew about, but somehow was concentrating so hard on cutting the grass beneath the tree that I hit my head smack against a low lying thick branch.  It knocked me backward almost off of the lawn mower.  I had the mental whereabouts to flip the switch to stop the blades and moved the tractor out from under the branch so I could sit up, but that was one hell of a blow.  I got a good goose egg on my head above my left eye right at the hairline.  I don't believe I got sick to my stomach later, but I was dazed and confused for several days.  I also had a persistent headache for about 4-6 weeks.  I thought I had overcome that, but what if some of my problems with my head and nerves and pain are caused by post concussion syndrome?  That is a good question I think I should ask my neurologist when I see her on November 7th.

If I remember right, I believe my symtoms eventually went away and I was fine by November when we went on a Thanksgiving Week trip to Disney World.  At Disney I did get a vertigo episode in the evening at the hotel on the day that I went on the Dumbo Ride with Jamie.  I attributed it to my Menier's Disease, but I wonder if I just had enough of a jolt in my head on that ride to bring back the concussion symptoms.  Hmmm.  Who knows?

I can't help but think that this could be why I have nerve/head pain on my forehead and directly above my eyes.  It could also explain the Occipital Neuralgia because my head was forcefully jerked backward when I hit the tree. 

Maybe I'm going down a wrong line of thinking but I think I need to include that information with the neurologist along with a request to take a good look at the nerves throughout my head and look for any damage or compression.  If found, identify which, if any, can be surgically corrected.  Because I cannot tollerate any of the anti-seizure meds, surgery is really the only option I want the neurologist to provide for me.  If I can even get half of these symptoms corrected or reduced with surgery, I would feel so much better.  We'll see.

I've decided to start tracking the symptoms going on in my head on a daily basis using outlines of a head front, back, and sides with a comment section under each.  This will allow me to graphically show where the pain is and then explain it in better terms.

In the meantime, I'm continuing with the Pain Management Rehab.  I have a few more weeks.  I think it's a good program and enjoy visiting with people who know what I'm going through.

Food and Pain.

Pizza, cheesy bread, cinamon rolls, cupcakes.  I might have well just given myself an I.V. of pain direct into my veins.  All those things I ate in one sitting at a birthday party for my husband's great niece at a pizza buffet place.  WTF was I thinking!!!! I'm in so much pain now I can't stand it and I know better.  I am really mad at myself right now.  So you may ask, "What's the connection with what you had for dinner and pain?"  GLUTEN is the reason.

Gluten is a protein found in wheat, rye, barley, and malt.  People with chronic pain often have an intollerance for gluten.  When the wheat protein enters your small intestine, your body treats it like a foreign object and the reaction you have to that foreign object is, guess what, PAIN.  So everything on the menu tonight was full of wheat, therefore, gluten, so I just basically overdosed myself with pain.

Other things that you ingest that cause pain are from preservatives and additives put in processed foods.  In particular Monosodium Glutamate (MSG), Aspartame, and Cystene. MSG is found in most processed boxed and canned foods.  Aspartame is used in almost all diet sodas, Cystene is found in some processed foods.  So read the labels before you put that yummy processed food in your mouth.  The preservatives and additives are put there to make food last longer than it should and to make bland foods taste better.  So if you look at it that way, why would you want to eat it anyway. Unfortunately the industrialization of foods is killing us.  If I felt better I'd protest, but I don't, so I just need to be vigilent about not eating this stuff as well as gluten.

05/08/13
I want to add to this post that since I have had my gallbladder out on February 25th, I am still having severe pain in my back, on the left side, around my kidney after I eat anything of significance.  My doctor has put me on an elimination diet to see if I can find out exactly what foods are causing the attacks.  I'll create a new post in this blog with details.

Different Muscle Relaxer

I went to my pain doctor yesterday and we talked about meds and procedures.  He prescribed me a different muscle relaxer.  It's called Tizanidine to take every 6 hours as needed.  I took one last night and one this morning.  They did help me sleep/relax and I did not have any reactions to them. Here's the scoop on the rest of the conversation:

Meds: 

• He did not want to add Wellbutrin because of possible seretonin overload.  He said that I should talk to a neurologist about that.  I need to call on Monday and make an appointment.
• He recommended Naproxine for the anti-inflamatory, which I've already been taking.  He did mention to take it with meals at breakfast and dinner.  So I'll try that.

Procedures:

• Pulse Radio Frequency therapy is where they go into the occipital nerve with a needle then pulse radio frequency for a couple minutes into the nerve to get the activity of the nerve to scramble and reset.  He used to do this a lot at John's Hopkins medical center but he did mention that insurance is not likely to approve it because it is still considered "experimental".  I went ahead and set up an appointment to get it done and they will query insurance in the meantime to see if it's covered.
• Occipital Nerve Stimulator is a gadget they implant in your head that you can zap yourself with to reset the neurological rythym when you are in pain.  The problem with this procedure is that the gadget often moves because of the position where it's at in your head and the amount of movement you do with your head.
• Nerve block/steriod injections.  I can continue to have these done whenever I want to or feel that I need them.  Since I only had 7 days of about 80 percent relief after the first set of shots, I'm not sure I want to go through that again or often.  He said there's no limit on how often you can have the shots.

So, I'm hoping the muscle relaxers help relieve some of the tension in my head/neck and that I'll get some relief from those while I wait to find out if the Pulse Radio Frequency is covered. 

I'm also still waiting on approval for social security disability.  They are waiting on the notes from yesterday's appointment to make a decision.

In the meantime, I'm trying to save up my energy from the mornings so I can be more functional for my family in the evenings.  This is quite a balancing act.

Excrutiating Pain!!!!!

My pain is so intense this evening I'm beside myself.  It originates behind my ears and radiates to the front of my head and temples.  I took prescription strength Naproxin and arthritis strength Tylenol at 7:00pm.  No relief.  I managed to get through until time to put Jamie (my 7 year old daughter) to bed at 9:00pm, then took my standard bedtime meds of Skelaxin, Nortriptaline, and Ambien.  I'm beginning to feel like a junky.  But even an hour after taking those meds I'm still in pain and not asleep yet.  I moved my pain doctor appointment up to tomorrow at 3:30pm.  I am desparate to see him.  I studied the medicine information I got from the Fibromyalgia Network and compared it to what I have been going through.  I found a major connection that is quite scary but I may be onto something.  Here it goes:

Dopamine, or lack of neuropathic transmission of, causes Parkinson's Disease.  When I took Baclefen, I started having jerking movements as though I had Parkinson's.  Baclefen reduces dopamine transmission, so my normal levels of dopamine and/or transmission of dopamine must be very low for one dose of this medication to put me into tremors.  The anti-seasure medications also suppress dopamine and when I tried to take them, I literally felt like I just wanted to die.  Low levels of dopamine cause major depression.  My fear now is that maybe Parkinson's disease is on the horizon for me.  It tends to show itself in people over 50 unless it is genetic. I'll be 52 next month. 

So another drug, Wellbutrin, increases dopamine levels and also increases seratonin and norepinephrine levels which relieve pain and depression.  Cymbalta stops the destruction of seratonin and norepinephrine at the nerve junction so it allows your body to maintain the levels it has.  By adding Wellbutrin, levels of all three neurological chemicals are increased which should help with pain and depression.  I'll go over this tomorrow with the doctor to verify that my understanding is correct.

Right now, I am just praying that I'll be able to fall asleep soon because I don't feel the pain when I'm asleep and I usually feel better in the mornings.  It's pretty bad to just want to wait for bedtime all day long.  I'm trying to stay halfway functional in the evenings for my family but it's getting harder every day.