Thursday, April 28, 2011

Medical Procedures

Medical procedures are a trial even when one is well. I have found it to be an absolute mine field due to my FM and CFS. Now that I know I have had FM for years it explains my adverse reactions to the various surgeries I've had over the years. I've woken up during a surgical procedure. Yuck! Then found bruises on my body afterwards where the staff apparently had to restrain me although I have no memory of that part. I take months to recover afterwards. I stay weak and fatigued for up to six months post surgery and prior to now no one has been able to explain why. I've also ended up in the ER with my throat swollen shut and unable to breath after a surgery involving intubation. They had to tank me up with prednisone to get the swelling down. Now that I know most of these reactions are due to the interaction of the meds with the illness here are some useful site for future reference:

Recommendations for Persons with Chronic Fatigue Syndrome (or Fibromyalgia) Who Are Anticipating Surgery
by Dr. Charles W. Lapp, MD
January 8, 2008

Guidance for Fibromyalgia Patients who are having Elective Surgery
Fibromyalgia Information Foundation

Safer Dental for the Chemically Sensitive

Hospitalization for the Chemically Sensitive Patient

CFS and Anaesthetics

Dr. Myhill
CFS Information for Your Dentist

I have included a few site regarding dentistry and multiple chemical sensitivity since my friend has both CFS and MCS.  She will be going to a homeopathic dentist.  Yes there are such people.  I knew about them because my sister had a weird dental problem and her regular dentist kept telling her she was fine.  After visiting withe the homeopathic dentist she had surgery to remove a large cyst that had been growing on her jaw beneath her front teeth.

Since I collect links please let me know if you have any additional sites that I could add to the list. 

Tuesday, April 26, 2011

Sick Humor

Funny Pictures - Cat Scan
see more Lolcats and funny pictures, and check out our Socially Awkward Penguin lolz!

Excellent News

About two months ago I phoned Dr. Anthony Komaroff's office and talked with his assistant.  I was told I had lucked out and he just started accepting applications for new patients.  However, he gets so many requests I have to go through an interview type process to be considered for becoming his patient.  The first step was for my primary to write him a letter talking about my symptoms and circumstances surrounding the onset of my illness.  My doctor sent him a letter almost two months ago. 

Well today I got a letter from him.  He wants me to fill out a questionnaire and send him my medical records.  I am SO excited.  I spent all day working on the information packet to send to him. 

I didn't think I would be needing any of my records for copying so I haven't done any filing for the last few weeks and as a result things were a bit higgledy piggledy.  After I straightened up my mess and printed out the stuff I had electronically I had already put several hours into the project.  Then I decided I had to write a cover letter as if my medical records weren't extensive enough.  But there is very little information in them covering the initial onset of the illness because my doc and I though this was just some weird virus that was going to go away.  Boy were we wrong.  Anyway, I spent six hours on this and I'm not done yet.  I'm exhausted but oh so happy.

Tomorrow I have to make a trip to Staples to make copies.  Then a trip to the post office to get a flat rate mailer because the packet is so heavy and includes several CDs  (MRIs, X-rays and video of me trying to walk on a bad day).

Yay Me!!!

Monday, April 25, 2011

Dr. Bell Part 1: The Main Lecture

I was very lucky last weekend.  The planets aligned in perfect order and I got to see Dr. Bell speak at the Mass CFIDS meeting.  The people there were great.  They made room for my wheelchair in the front row.  What surprised me was that I was the only one there in a wheelchair and that it was such a small group.  I had hoped for a larger crowd.

I've been putting off writing this because I am going to have to think rather than my usual stream of consciousness ramble.  I am going from week old notes when I was brain fogged.  You can actually see my handwriting deteriorate as the meeting went on.  I am going to try to summarize accurately however I am not guaranteeing anything.  This post is what I heard not necessarily what he meant.  Please keep that in mind.  I'm hoping that the video will get posted soon.  There was a guy with a camera there but there isn't anything up on Mass CFIDS yet.  So without further ado (anything in italics is my own commentary):

The talk was hinged around the study of the Lyndonville outbreak of the mid 80's.  These are the people that dragged Dr. Bell into the thick of CFS and his trying to help them has made him the expert he is today.  Dr. Bell has followed this cohort for 25 years now and this lecture discusses recovery from CFS.

Defining Normal:
How do you define normal?  Is a person recovered when they have made adaptations so that they can participate in normal activities such as sleeping the day after a big event?  Or is a person recovered when they have complete resolution of their symptoms and there is longer any signs of illness? 

When he questioned his Lyndonville patients some would say they were fine but in reality they were making adaptations so that they could function.  Using evaluation instruments it turned out they were often functioning at roughly 80% of normal. 

After 13 years of the initial outbreak between 1983 and 1987, Dr. Bell found that 20% of the original cohort was still seriously ill, 40% were okay with modifications (adaptive behaviour) and 40% were fully recovered.  (This is much better than what is usually quoted in the literature of a 25 % recovery rate.)

While Dr. Bell has spent most of his career telling patients that they aren't crazy or delusional, they are delusional about one thing.  They have been told by so many people that they are "fine" or "you're a hypochondriac" so often that they start to believe it even if they are very ill.  His patients are often in a state of denial about their own illness which he referred to as "health identity confusion".  This occurs for the following reasons:
  • They look normal
  • Public perception is that CFS doesn't exist
  • Many doctors don't believe it exists
  • Lab tests come back normal
  • Evaluation by specialists yield no diagnosis
He has to spend considerable time trying to convince them they are actually ill and often very ill.  Interesting patient stories left out since I didn't take notes.

Twenty five years after the initial outbreak occurred a series of evaluation instruments were used to determine the health of the Lyndonville cohort.

Instrument                     Control       CFS        Recovered CFS
SF 36                          76-96       10-20
Activity Hrs                 15.25        5.0              13.0                
#of hours spent upright doing things (not TV)
Bell Ability Scale      100         30               85
McGill Pain                0.0         20.0            7.5
Pittsburgh Sleep      0.5         12.0            6.0
Fisk Fatigue                  2.5         106             26

The control group was selected with great care with absolutely no history of any type of sleep disorder illness such as mono.  I believe he mentioned that these patients have been/are being used by others such as WPI and NIH for CFS studies.  I didn't write it into my notes and my memory is a bit patchy regarding the details of this.  Apparently I also missed the numbers for the VAS instrument.

He believes in the oxidative stress model of illness.  Basically CFS patients have high oxidative stress.  We lack the enzymes to deal with oxidative stress.  Oxidative stress causes aging.  CFS oxidative stress and aging oxidative stress are additive.  So if we haven't recovered from CFS within 2-5 years then as we age we will deteriorate.

The last slide describes his current working model.  He believe beyond a doubt that there is a viral onset.  Whether it is XMRV or something else is yet to be determined.  It basically follows one of four paths:
  1. Viral onset; infection with no oxidative stress; cancer
  2. Viral onset; infection with elevated cytokines and oxidative stress; ROS injury to mitochondria
  3. Viral onset; infection with elevated cytokines and oxidative stress; cytokine symptoms and injury to NK cells
  4. Viral onset; infection with elevated cytokines and oxidative stress; oxidative stress isoprostanes decreased cerebral blood flow, decreased cerebral blood volume
I don't understand this last slide.  I put it here as I copied it off the powerpoint show.

The Q&A following the lecture was an additional hour and half of material some of it political and some of it audience members plugging their own cure for CFS.  I will write about the medical parts of the Q&A in my next post.

Friday, April 22, 2011

Just Keep Piling It On

My tummy had just calmed down from a four day assault, when two days ago I had one of my 'bad' days.  The kind where I wake up already in a brain fog and having trouble walking around the kitchen to make tea just after getting out of bed.  Never a good sign.  Of course within an hour or two I'm a complete basket case.  I still haven't been able to find the triggers for these odd days where I wake up more of a mess than I went to bed. 

And then comes today.   About 2 or 3am while I'm fast asleep, I bring stomach acid up into my mouth.  I wake suddenly with my throat in searing pain unable to breath due to the acid.  I swallow fast and eject my dental appliance out of my mouth so that I can gasp for air.  My husband jumps out of bed scared to death.  I send him off for the Tums and a glass of water while I sit on the edge of the bed catching my breath.  I decide I have to sleep the rest of the night sitting up.  Just peachy.

When I wake up at 8am, which is wicked early for me,  I don't feel quite right.  I want to sleep some more but I'm restless and my tummy doesn't feel right.  Instead I watch morning TV which is a treat for me since I usually sleep through The Today Show and Rachel Ray.  I finally decide I need to get something into my stomach but the only thing that is remotely appealing is black tea with milk.  Of course I was supposed to be starting my elimination diet today.  Hah.  Fat chance.  I'm having tea.  I brew a whole pot and settle down with a hot mug to watch Rachel talk about how to spice up your profile for an online dating service.  Rachel finshes up with her usual pasta dish of the day and I finally decide I had better get something on my stomach.  I toy with the idea of having GF oatmeal made with almond and coconut milk from The Diet but it sounds thoroughly unappetizing.  Instead I go for my old icky tummy standbys; a banana and a soft boiled egg.  So much for the elimination diet.

To add insult to injury the headache starts.  I know this headache.  It is the evil kind.  The kind that if I don't do something fast it is likely to turn into a full blown I want to rip my head off with my bare hands migraine.  My kid calls from work and I ask him to stop by the donut shop and pick me up a cup of coffee on his way home.  I don't normally drink the stuff which is why I don't have any in the house.  He comes home with a hot cup and I down it along with an Excedrin migraine tablet.  I go and sit down and wait.  Will this fix it or is it going to get worse?  It can go either way. 

While I'm waiting I start to feel my shoulder muscles tense up.  The pain in the back of my head hurts so badly my shoulders and neck muscles contract and add to the mess.  Years ago, the last time I ever went to see a doc about my headaches, he told me they were tension headaches and not migraines and refused to refill my migraine meds.  Hah!  BS!  My muscles tense up after the pain starts not before.

Anyway the kid and I had appointments with my wonderful chiropractor so off we went headache and all.  Dr. J almost twisted my head off but got my neck adjusted and he was happy with it.  The fact that my ears felt like they were on fire did detract from the headache pain so I guess it was a win for me as well.  Back to the house we went, stopping for a second cup of coffee so that I would have a chaser for the second round of Excedrin.

Lucky for me, someone on one of the FM groups I subscribe to on Facebook also had a migraine and was asking for help.  I heard all sorts of odd remedies including medical marijuana and mixing prescription pain killers with Jack Daniels, neither of which were options I was willing to try out.  Instead I did hear about taking B6 with magnesium.  Of course being a walking supplement dispenser I had both of those on hand so I decided to try that out.  What the heck I take this stuff daily anyway, although I had skipped this morning's fistful of pills due to the funny tummy problem.

Roughly half an hour later the headache stopped getting worse.  It didn't get better but it stopped getting worse.  Huh.  Maybe the supplements did some good.  Maybe I can avoid escalating to the next level of pain warfare; prescription pain killers and muscle relaxants.  

Hubby and I went out to dinner and I tolerated the restaurant okay even though it was noisy.  The pain didn't go away but it didn't get worse.  We went back home and I lumped on the couch to watch TV and it didn't get worse. 

After five hours of sitting still and relaxing the headache is almost gone without having to turn the lights out and sit in the dark.  Of course I'm probably going to be up until the wee hours due to all the coffee I drank (which is why I don't drink the stuff) but I didn't have to resort to the heavy pain artillery.  Yay!! 

The elimination diet is toast.  Depending how my stomach is doing I may not start it tomorrow either.  We'll see.  Each day with CFS is a new adventure.

Wednesday, April 20, 2011

The Diet From Hell

As part of my CFS/FM treatment the docs want to find out if I have any other food allergies/sensitivities.  I just got back from the nutritionist with the diet from hell.  It is a full elimination diet specifically for CFS/FM.  For 6 weeks I can't eat any form of the following:

Sugar in any form
Coffee/black tea
Artificial anything: coloring, flavoring, additives
Dried fruits: raisins, mango, apple, etc
Nightshade vegetables: tomato, white potato, eggplant, peppers

After six weeks is up, I can introduce one food at a time in large doses: i.e. pure form at every meal.  Then wait and see if there is a reaction anytime during the next four days.  If not I get to add another food.

Thankfully there is a lot on this list I don't eat anyway.  If my energy levels stay as they are now I should be able to handle this.  However, she did say there is typically a herx reaction during the first four days of the elimination so I would get worse.  This is going to cause problems since I've been doing mostly crock pot cooking and the recipies have lots of ingredients on the forbidden list.  Luckily I do have a couple of allergy cookbooks so I'm going to have to take a look and see if there are any recipes I can modify for the slow cooker.

She did provide me with extensive lists of things I can eat and where to buy them locally.  She gave me a flexible sample menu and lots of ideas for snacks so that I can eat smaller meals instead of three large ones.  She also had me buy rice protein powder to add to foods since I do better with at least some protein at every meal.  I was frequently using dairy to fulfill this need. 

This is one of my own personal quirks.  Everyone is different.  I was like this before I got sick with CFS.  While I was training for skating competitions I always had a bit of protein with each meal and snack I had.  It kept my energy level much more even and stopped me from grabbing cookies or sweets.

I'm not going cold turkey on this one.  I still have yogurts and dried fruit that will go bad during the six week time frame so I will eat those.  As I have to replace groceries I will make the substitutions.  Hopefully this will reduce the herx reaction not to mention the caffeine withdrawal symptoms.  Besides Easter is coming up and my birthday.  I want chocolate and cake and pizza.  So I've given myself two weeks to cheat and ease into this.  The first to go off my list is eggs since I ran out today along with milk and GF bread.  No more soft boiled eggs, tea and toast for breakfast.  I'm going to try GF oatmeal made with almond and coconut milk tomorrow.  If it tastes any good I'll post the recipe on Fast Foodie.  Wish me luck!

Monday, April 18, 2011

Food Allergies

Lots of us with chronic illness find that we are now sensitive to various foods.  I know I am fairly sensitive to wheat.  While I can cheat and eat an occasional item, baked goods, breads, pastas and cereals are no longer part of my day to day eating plan. 

My new doc is also sending me to a nutritionist who is going to start me out on an elimination diet to see if I have any other food sensitivities.  Because I don't have an anaphylaxis type reaction I don't qualify for the true allergy label, hence I am "sensitive" and not in a good way.  So this post today by Stonesoup is very apropos:

3 Unbeatable Tips for Coping with Food Allergies: Divine Gluten Free Chocolate Muffins

My Testamony

 I just submitted my testamony for the May meeting of the Chronic Fatigue Syndrome Advisory Committee.  The committe is part of the Department of Health and Human Services and they have requested patient testimony either in person, on the phone or in written form.  Here is mine:

My name is ______. I first fell ill May 8, 2010 with a virus that I caught from my son. He recovered and I did not. Before I became ill I worked full time for ____________, took care of my family and was in the middle of training for my first competitive season as an adult figure skater. I had already won two medals. Now, I am mostly housebound and occasionally bed bound. In order to get a diagnosis:

I had 35 Office visits, 4 Phone consultations and countless emails
I saw 9 Doctors, 3 Med students, 1 Psychologist and 1 Psychiatrist.
I gave >50 Vials of blood (I lost count after 30), had 2 Cortisol saliva tests,
2 Urine tests, 1 MRI of brain, 1 CT scan of abdomen, 2 Ultrasounds, and
~12 X-rays

After eleven months of doctor visits and tests what did they find?  Low B12, Low D, Elevated inflammation markers, and Suboptimal thyroid function and minor impaired cognition.

I live near Boston so I have access to the finest medical facilities on the planet. During the eleven months that I tried to get diagnosed as soon as a specialist had run all their tests I was foisted off on the next specialty. I saw a virologist, infectious disease specialist, an endocrinologist, a neurologist, a psychologist, psychiatrist and two rheumatologists. I was passed around like a hot potato. No one wanted me as their regular patient. Although I met the CDC criteria for CFS since last October not ONE doctor wanted to go on record with a diagnosis of CFS. This is Boston! Apart from Dr. Kormaroff, to whom you have to apply to become a patient, there are no mainstream doctors that want to diagnose or treat CFS.

Why is this? There is no biologic marker that can be used for definitive diagnosis and there is no money available for CFS research! Due to the lack of an accepted biomarker they are too scared of insurance companies and lawyers to go on record with a CFS diagnosis. Also, they will not waste their limited resources on an illness that has no funding. In order for them to have a thriving career they must concentrate their resources on illnesses that have adequate research monies available for them to be able to do cutting edge research, publish papers, develop drugs and treatment protocols, in the hopes that they will become the next Crick and Watson. They don’t want to waste their time involved with legal cases trying to prove that I’m actually sick when there is no proof.
What does this mean to me as a patient?
It took 11 months to get a diagnosis.
I had to go to a holistic health practitioner to get that diagnosis.
I still haven’t heard back from Dr. Komaroff even though my doctor sent him a letter over a month ago.
I have no rheumatologist that wants me as a regular patient.
My long term disability insurance company turned down my application due to lack of medical evidence.
Because of that I lost my job and health insurance for my entire family.
Social security is sending me to a psychologist due to lack of medical evidence and there is a good possibility that they will turn down my application as well.
Where does that leave me? I have no income and no medical insurance. Now that I have a diagnosis I have no way to pay for treatment. And why is this?


So I am stuck in my bed with no hope of treatment never mind a cure. I am dependent upon others for food, housing and medical care. All because of a lack of funding.

Saturday, April 16, 2011

Chronic Pain Amplification Syndrome

This is my official diagnosis from the rheumatologist.  It includes fibromyalgia as a subset.  I'm still looking into it but here is a short summary.

Friday, April 15, 2011

My Tummy Hurts

I'm now on all of the supplements the doctor suggested.  I added them one at a time so that I could figure out if one of them wasn't agreeing with me.  Well one of the last ones I added seems to be causing problems.  Basically I'm getting cramps in my lower abdomen.  The trick is figuring out if it is wheat ingestion (I cheat a lot), the CFS, my girl parts acting up, or one of the supplements.  I'm beginning to suspect the supplements.  Some of them I only take at night.  There are so many I split up the dosing into three parts, breakfast, lunch and dinner.  My guts only seem to hurt after the lunch dose.  Since my innards seem to be hurting at the same time everyday rather than on a random schedule I'm pretty sure it is one of the pills.

So I did a little research on the pills I take at lunch and dinner (yes I have to double dose on each of these), Quercetin, alpha lipoic acid and acetyl L-carnitine.  While all three have various side effects the one I think might be causing most of the problems is the quercetin.  Apparently it interacts with both the Celebrex and trazadone that I'm on.  It also causes digestive upset (big hint here).  Acetyl L-carnitine can also cause upset but not as much as the quercetin, so I'm going to drop it out of my regimen for a couple of days and see if my belly aches go away.

Now, if I could only stop eating wheat like I'm supposed to I'd be all set.

Thursday, April 14, 2011

Is That Light I See at the End of the Tunnel??

I'm starting to feel better.  Of course now I've probably jinxed it.  But I think it is a confluence of events.  I've been on a tiny dose of Trazadone for about a month now to help induce stage 4 sleep.  I now can sleep for at least six hours straight without waking and often manage an entire eight.  This is a novelty for me.  I was waking a lot even before I got sick.  Since about January between poor sleep and pain I wasn't doing well in the sleep department and I was miserable.

Several weeks ago I got a shot of Lidocane in my right shoulder.  While it did put me in bed for three days straight once the herx wore off a great side effect set in.  Not only did it kill the pain in my shoulder but it also stopped the pain in my entire body.  Nothing hurt.  All the joint and muscle pain disappeared.  Four weeks later it is slowly creeping back in but I've had a relatively pain free month.  I also bought a squishy foam pad for my bed for $20 at an outlet store.  It has been bliss sleeping this month.

My new holistic doc put me on tons of supplements.  I'm debating whether to list them or not since they were based in part on my bloodwork and saliva tests.  I also haven't researched them yet so I have no idea why I'm taking them.  Talk about blind trust in the doc.  However, I'm doing better.  Since I started this regimen two weeks after the shot in the arm and sleep meds I think I'm seeing an improvement that are a direct result of the supplements I'm on.  For someone who hates taking pills I can't believe I'm taking them by the fist full now.

I also got a break from hubby.  While he was gone I got to go out and play with my Mom and Sister.  I hadn't realized how depressed I had become.  It had creeped up on me and I was in denial.  It was an eye opener how happy I was when they were here.  So now I've arranged for even more counseling.  Hubby and I will have our first session in three weeks.  This illness has been ridiculously hard on both of us and we need some help coping.  It took a lot of nerve on my part to make the call today.  I was in tears on the phone to the shrink.  However, now I'm kind of happy about it.  We're going to get some help.  Things will get better.  Life is good.

Wednesday, April 13, 2011

Busy Busy Busy

I can't believe how busy I've been for a sick person.  I just saw the last round of specialists: a neurologist and a rheumatologist.  I am now making the rounds of practitioners that are trying to help me feel better.  So, lots of appointments.

I'm also trying to get everything together to send off to the lawyer for my LTD appeal.  This is a paperwork nightmare.  Of course I keep forgetting to give release letters to doctors or not getting the correct information from their files.  Hazards of leaving medical care to a sick person.

I've decided I need a medical advocate that will also drive me to appointments.  Any volunteers??

I've also started to do some advocacy work.  I've participated in emails to representatives regarding the budget cuts.  I'm in the middle of preparing a statement for the CFS Advisory Committee meeting next month.  I would love to videotape it.  I'm not sure I'll get my crap together to do that in time but I think it would be better read aloud than written.  I need to check to see if videos can be submitted.

Of course all I really want to do is lie in bed and read.  I'm exhausted.  I've crashed this week due to girl stuff.  It used to crash me when I was well now it brings me to my knees.  Talking of that.  I'm going to bed.

Tuesday, April 12, 2011

Dear Nurse,

Dear Nurse,

I know I'm being pushed around in a wheelchair.  I know I need help walking.  I know I need to lean on things because I have balance problems.  However, this does not make me feeble minded.  This does not make me hard of hearing.  So please don't use that patronizing tone of voice with me.  I know you mean well.  I know you are trying to help.  But I hate it.  Please don't do that anymore.

Ms Baffled
CFS Patient

Saturday, April 9, 2011

How Many Licks Does It Take to Get to the Center?

35 Office visits
countless emails
4 Phone consultations
9 Doctors
3 Med students
1 Psychologist
1 Psychiatrist
11 Months
>50 Vials of blood (I lost count after 30)
2 Cortisol tests
1 Urine test
1 MRI of brain
1 CT scan of abdomen
2 Ultrasounds: one kidney and one thyroid
~12 X-rays: chest, neck, shoulders, ankle, knee

Diagnosis: CFS and Fibromyalgia with secondary depression
Other things found: kidney cyst, remnants of whiplash in neck, nodules on thyroid, calcium deposit in right shoulder
Unrelated stuff: osteoarthritis of the thoracic spine, sprained ankle, rotator cuff tendinitis (from calcium deposit)

Now to start on the healing part of the journey....

Friday, April 8, 2011

And....I'm Back

Had a great visit with my sister and Mom.  They got me out of the house almost every single day they were here.  I got to do girl stuff with them.  We went around Bed and Bath, Kohls and Lane Bryant to name a few.  I went on a wonderful shopping spree.  We came home everyday with the car packed with goodies.  They helped with making dinner, dishes, laundry.  My sister even washed the rug in my bathroom.  How awesome is that!?!  I now have new cooking pots and dishes, new clothes and a squishy pad for my bed.

Most importantly though we sat and talked until we all cried.  I now know that I am loved and whole even if I am sick.  I have people that love and care for me and who will take care of me no matter what.  I can't tell you what a difference that has made to me.  I can't possibly describe how much better I feel knowing this.  I am so very very lucky to have a family like this.

Tuesday, April 5, 2011

Brief Hiatus

Just on a brief hiatus.  Family is in town and I am enjoying their company.  I'll be back in a few days.