Cold Viruses & ME/CFS & Fibromyalgia

Before delving into the oh, so, uplifting subjects of illness, ME/CFS and Fibromyalgia, I just have to celebrate for a moment, this,...

MY 100TH POST IN "FIBROMYALGIA???"!!

I can hardly believe it!  I started writing this blog on Jan 13, 2011 in the midst of feeling so sick and recently having been diagnosed with Fibromyalgia (the ME/CFS diagnosis came later).  I'm so thankful for the progress that I've made since then and I hope that some of my experiences were helpful to others who face a similar plight.  Of course, I realize that at any time, I could be right back where I started which is why I will never take my health for granted again.

In celebration of this momentus occasion, I'm having a sale in my Etsy shop, Catalina Inspired, for all of you who've read my blog and let's face it, really deserve something for going through the hell that is ME/CFS and Fibromyalgia (or what ever other challenges you face in life).  Please use the coupon code - 100THPOST - to enjoy 20% off your entire order in my shop through 7/16/2012.


Here's a sampling of what you'll find at

Catalina Inspired on Etsy:

Ok, enough celebrating and back to the topic at hand.

My two and a half year old daughter brought a lovely cold virus back home from pre-school earlier this week.  My entire family has been suffering with a horrible cough, sinus congestion and just feeling super crappy since then.  Before I fell ill on Tuesday, I had a reaction that reminded me that although my ME/CFS & Fibromyalgia are somewhat under control at the moment, what ever it is that caused them in the first place is still thriving in my body. 

I woke up Monday with a scratchy throat which didn't surprise me since I'd been constantly wiping my daughters runny nose the previous day.  What did surprise me however, was what happened later in the afternoon. I started feeling those all too familiar jabbing pains throughout my entire body. In an hour or two I was in bed with a heating pad, moving it from my back, to my legs, to my hips, etc and had strong, throbbing, stabbing pain throughout my whole body and was not able to get out of bed. I couldn't sleep because the pain was too strong. It was like I'd been transported back two years and I was in the middle of Fibromyalgia hell again.

Fortunately, I was finally able to fall asleep that evening and when I woke up on Tuesday, I felt as though I was getting the cold my daughter had but the jabbing pain had diminished to a tolerable level.

It makes me so curious to know why, when attacked with this common cold virus, my immune system revolted into a full autoimmune attack. It makes me think back to those theories about viral causes to ME/CFS & Fibromyalgia and wonder if there isn't something more to it.

CFS/FM Study at Beth Isreal, New York, NY

I wanted to pass on this information to anyone in the New York metro area who is suffering from Chronic Fatigue or Fibromyalgia symptoms.  The following story aired on CBS Newsradio 880am in New York on June 19th, 2012.
 
Interview with Dr. Benjamin Natelson, Director of the Pain and Fatigue Study Center at Beth Israel in Manhattan

Dr. Benjamin Natelson is also the author of "Your Symptoms are Real" published in 2008 and a professor of neurology at Einstein. This is the website he refers to for more information about the study he's conducting:  www.painandfatigue.com

The study has been funded partly by the National Institutes of Health and sounds very promising.  I haven't read Dr. Natelson's book but plan to do so right away.  In the radio interview, he admits that over the twenty years he has been researching CFS & Fibromyalgia, one of the most important breakthroughs he and his co-researchers have made is simply the general acknowledgement of the existence of these diseases.  Although it's still hard sometimes to get a doctor to take you seriously, you can usually find one eventually that will.  I cannot imagine what it must have been like twenty years ago to have suffered so severely and had doctors tell you it was all in your head.  I don't know how I would have endured it.  I was at least lucky enough to have come down with ME/CFS & Fibromyalgia after people like Dr. Natelson had finally convinced their colleagues in the medical community that this was something to be taken seriously.

If I were still symptomatic, I would be on a plane to NYC ASAP!  I'm from Central New Jersey and my family still lives there (which is actually how I found out about this radio interview) so it would have been a no-brainer for me. However, I'm happy to remain here in (not too) sunny Southern California and be feeling as great as I have been for the last three months.  I'm still doing really well on 125mg amitriptyline and 2mg lorazepam per day.  I've been walking about eight miles per week, up and down 9.5% grade hills and on good days, have been able to maintain a 2.8mph pace up the steepest slopes.  I will never again, for one moment, take my health for granted.  As I've said countless times before...I only hope it lasts.   

(By the way, in case anyone is keeping track, this is my 99th post which means my next post will contain a coupon code for 20% off your entire order in my Etsy Shop, Catalina Inspired in celebration of my 100th post! - I can hardly believe it!)              

Eating In Your Sleep?!

It's embarrassing to admit but I can only explain this bizarre behavior as a side-effect of my newest medication.  As I've reported, now many times, I seem to have found a medication combination that finally has freed me, if only temporarily, from the grasp of this unknown illness.  I'm still feeling better, three and a half months after starting amitriptyline.  I'm also taking lorazepam for sleep because, while the amitriptyline takes away many of my symptoms including fatigue and pain, it doesn't seem to help my sleep problems much.

I've had some very unusual side effects from this medication, the strangest of which involves an insatiable urge to eat in the middle of the night.  It seems to have gotten a little better as my body adapts but at first I didn't know what was going on.  I'd wake up in the morning with a half a peanut butter sandwich stuck to my arm, tortilla chips or Goldfish cracker crumbs everywhere in my bed and only a very vague recollection of having gotten up in the middle of the night and it was happening every single night.  I finally got smart and started leaving myself something simple and healthy to eat, like a banana, where I could easily grab it.  Then I'd wake up and find the banana on my night stand or IN my bed with only one bite taken from it. 

I could go on and on relating entertaining anecdotes of my "sleep eating" but the fact is, this reaction is rather disturbing.  As a child and young adult I talked and walked in my sleep from time to time but eating in my sleep?  No way!  I only have a very vague memory of these actions and sometimes, none at all.  I also fear the very real possibility that I'll choke on something I'm eating if I lay down with the food still in my mouth.

I've known people personally who took prescription sleep medications and did all sorts of crazy things in their sleep but I'm curious to know whether anyone else has had this happen while taking amitriptyline.  Although this baffling behavior is disturbing, I'd gladly endure it every night rather than be as sick as I was such a short time ago.

Fibro Brain Fog, Thick as Ever

I've been on a strictly vegan diet since March 1st, almost three months.  I've also been taking 150mg, now 125mg of amitriptyline each day.  As I've written before, I'm been feeling better than I have in two years.  I'm able to exercise and do things that I couldn't even think about doing before. 

Yesterday I painted the wooden table out on the patio of the hotel I manage.  I was able to go down the stairs to our maintenance closet, walk back up the stairs holding a quart of paint and paintbrush and still have enough energy to paint the table.  After that was completed, I was even able to water the plants and do some pruning.  A few months ago, I wouldn't have been able to descend the stairs and climb back up without experiencing a lot of pain and shortness of breath.

I'm not sure what's responsible for this huge change in my condition and I sometimes fear it's simply a remission that will run it's course and eventually end.  After all, my diagnoses of Fibromyalgia and ME/CFS (Chronic Fatigue Syndrome) were never proven.  I always wondered if it were something else I was afflicted with but I could never afford the blood work to check for NK cell function, viral titers, VO2, RNase L and cytokines count.  I've recently read that these bio markers go along way towards scientifically "proving" these diseases.

My physical condition has improved tremendously but my cognitive impairment stubbornly continues to fog my brain.  I'm able to do so much more, but my memory and recall are horrible.  Unlike most people, I was always good at remembering names and faces.  In fact, I've embarrassed myself on several occasions by walking up to greet someone by name, who had no idea who I was.  At least that won't be happening any time in the near future. 

Now when I'm having a conversation with someone, I find myself not having the words to convey my thoughts.  It's almost as though I have a stutter.  I'll get stuck on a word like a broken record and have to stop speaking completely to "re-boot" my brain, then start the sentence again.  I'm sure people don't notice it as much as I do, but I feel really self conscious when it's happening.  I also find myself not being able to remember simple words.

Don't get me wrong, I'm not complaining!  I feel so lucky that I have this time to do some of the things I haven't been able to do in the last two years, especially spending quality time with my two year-old daughter.  I'll never again take my good health for granted, knowing that I could loose it at any time.

Growth Hormone Treatment for Severe Fibromyalgia

I just got an email update from MDLinx about the following article.  This is only a summary of the article.  In order to read the whole thing you have to pay $32 I think.  The source link is included at the end of the article summary if you're interested in purchasing it:

Pain, 04/04/2012

Cuatrecasas G et al. – In this largest and longest placebo–controlled trial performed in FM (NCT00933686), addition of growth hormone (GH) to the standard treatment is effective in reducing pain, showing sustained action over time.
Methods

• A total of 120 patients were enrolled in a multicenter, placebo–controlled study for 18months.
• They were randomly assigned to receive either 0.006mg/kg/day of GH subcutaneously (group A, n=60) or placebo (group B, n=60) for 6months (blind phase).
• The placebo arm was switched to GH treatment from month 6 to month 12 (open phase), and a follow–up period after GH discontinuation was performed until month 18.
• Standard treatment for fibromyalgia (selective serotonin re–uptake inhibitors, opioids, and amitriptyline) was maintained throughout the study.
• Number and intensity of tender points, Fibromyalgia Impact Questionnaire (FIQ) with its subscales, and EuroQol 5 dimensions test (EQ5D) with visual analogue scale (VAS) were assessed at different time points.

Results

• At the end of the study, 53% of group A patients obtained fewer than 11 positive tender points, vs 33% of group B patients (P<.05). 39.1% vs 22.4% reached more than 50% improvement in VAS (P<.05).
• Group A patients showed significantly improved FIQ scores (P=.01) compared with group B.
• Although GH discontinuation worsened all scores in both groups during follow–up, impairment in pain perception was less pronounced in the GH–treated group (P=.05).

Read more: http://www.mdlinx.com/pain-management/news-article.cfm/4003919/fibromyalgia#ixzz1vWoGSN3f

Uninsured With ME/CFS and/or Fibromyalgia - Part 3 - Prescription Medications

This post is the third in a series concerning financial strategies for those who've been diagnosed with a chronic illness, are uninsured and living on a low income. Click below to see the original post:

What to Do When You're Diagnosed With ME/CFS and/or FMS and Don't Have Health Insurance

So, you've seen the doctor, had some blood work done and depending on the results, may have gotten a prescription to address your pain, fatigue or other symptoms.  Many prescriptions for ME/CFS and Fibromyalgia are new and really expensive.  This also means that there aren't generic alternatives.  One doctor I saw prescribed Cymbalta which has a three-hundred-fifty dollar per month price tag!  Incidentally, this particular doctor (a Rheumatologist) had almost no experience dealing with low income and/or uninsured patients as well as countless other faults.   I filled only half of the prescription and charged it on my credit card.

The clinic my GP (who I really like) practices at, has a person on staff who helps uninsured, low-income patients obtain prescription medications at discounted rates or for free, depending on the situation.  When I first started seeing this patient advocate few years ago, it all seemed like magic.  My doctor wrote the prescription and had it forwarded to the advocate.  I made an appointment to see her, she explained which financial papers I needed to provide, she'd fill out some forms and I'd sign them.  In about two weeks, I'd go back, she'd hand me a bag of name-brand prescription bottles, I'd thank her and walk out the door without paying a dime.  Later I started catching on to what she was doing.  The best part is, anyone can do it!

The advocate was simply contacting the pharmaceutical companies and applying for financial assistance on my behalf.  I thought, I'm pretty smart, I can do this myself.  It ended up being easier than I ever imagined.

When I first learned about the high cost of Cymbalta, I started to panic, thinking I'd never be able to afford it.  Then I looked back in my records at the forms my advocate had filled out.  I tried to mimic what she had done. 

The pharmaceutical company that manufactures Cymbalta is Lilly, the same company that makes Prozac. I went to the Lilly website, searched around a bit and finally found a financial assistance form to download.  I can't remember exactly which financial documents they required, but I believe I sent a copy of my previous years tax return and a month's worth of my husband's pay stubs.  I put the application and accompanying documentation in the mail and prepared myself for the usual routine, complete with countless follow-up calls and re-submissions of my application.  To my overwhelming shock, the situation I'd come to expect, never materialized.

About two weeks after I submitted my application, I took out the copies of what I'd sent, took a deep breath and dialed the customer service number, poised for battle.  A friendly man answered the phone  and asked what he could do for me.  I explained that I was calling to check on the status of a financial aid form I had submitted.  After obtaining my name, he quickly pulled up my file.  I had expected the usual "I'm sorry, our computers are really slow today" line, but no excuse was needed.  He cheerfully reported that my application had been approved and the medication was already on its way to my doctor's office.  I thanked him profusely, and hung up the phone in utter disbelief.  His claims were not fiction as I picked up the four bottles of Cymbalta during my next doctor's visit.  My doctor, apparently not used to dealing with uninsured patients, did not handle the whole situation well at all and I never saw her again after that.  But that's beside the point.

What I'm about to write is also beside the point but has to be said. I found it interesting, to put it mildly, that the pharmaceutical company was so willing to mail me drugs with a value of approximately $350. It says volumes about how over-priced these drugs must be in the first place and how huge the profits are. You wouldn't, for example, walk into a grocery store, show them a copy of your tax return and get $350 worth of groceries. But, I suppose I shouldn't look a gift horse in the mouth (if you'll excuse the cliche) so I won't continue with this particular tirade

The point is, that it is possible to get prescription drugs at a discount. Most drug companies will give just about anyone (with a prescription from your doctor of course) a free one month trial. You can usually print the coupon out on your computer and give it to your pharmacist with your prescription.

In the next post, I'll tell you about third party drug distributors that offer huge discounts. Yes, it's legal and based in the USA.

Unisured With ME/CFS and/or Fibrmyalgia - Part 2 - Bloodwork

This post is the second in a series concerning financial strategies for those who've been diagnosed with a chronic illness, are uninsured and living on a low income.  Click below to see the original post:

What to Do When You're Diagnosed With ME/CFS and/or FMS and Don't Have Health Insurance

So, now you've seen the doctor and if you've found one who takes you seriously, he or she will probably have ordered a lot of expensive blood work in order to check for autoimmune diseases such as Lupus, Multiple Sclerosis, Sjogrens Syndrome and Rheumatoid Arthritis.  I'm still paying for blood work I had done over a year ago.  If you don't have insurance, you could find yourself receiving a bill from the lab for $2,000 or more.  I got some much needed advice regarding these invoices from a very unlikely source. 

After receiving the invoice for this very expensive blood work, I called Quest Diagnostics to set up a payment plan since there was no way I'd be paying the entire amount up front.  The customer service rep. I spoke with was truly a caring person and spent a lot of time with me.  If you've had any experience with similar situations, you know how incredibly rare this is.  She set up a payment plan for me then asked what my household income was.  I thought this was an unusual question but I answered it anyway.  She proceeded to tell me about Quest's financial aid program.  She said she would mail me the application form and I thanked her profusely for her help.  Sure enough, I received the application form in the mail a few days later, filled it out, attached the requested financial documents and mailed it out. 

The next invoice I received from Quest Diagnostics had a credit applied that equaled about half of the original amount due.  I was shocked and wished I'd remembered the name of the woman who was so helpful the first time I called.  This whole experience taught me an invaluable lesson that I would like to pass on to everyone else who's in a similar situation. 

The lesson is, to always ask if there's financial aid available no matter how unlikely it may seem at the time.  The worst they can say is "no".

The next post will cover prescription medications and ways to get them at a discounted rate or for free!

(Btw - this is post #95 - five more to go till 100 and 20% off everything at Catalina Inspired on Etsy.  Look for the coupon code in post # 100)