ME/CFS, Fibromyalgia & Marriage - It All Comes Down to Trust

The damage ME/CFS and/or Fibromyalgia does to a marriage can be profound.  Its invisible nature makes it seem phantom-like, drifting in and out of reality (except to the sufferer, of course, to whom the disease is never, even for one moment, forgotten).  Since there are no blood tests to prove its existence, there can be a veil of distrust and resentment that hangs over the relationship.  No matter how supportive your spouse is, there is always that nagging question in your mind  "Is he supporting me out of a sense of duty or does he really believe I'm suffering?". 

I often wonder how long my husband will be patient with my ME/CFS & Fibromyalgia. Will there become a time when he finally says "That's it!.   I've been putting up with her claims of this debilitating illness for years and there's no proof that it actually exists. It never gets better and no doctor seems to be able to help her. Have I just been a victim of her delusional hypochondria all this time?"

Then of course there's the self-doubt. Maybe I really am crazy. Maybe this really is all in my head or I just have too many negative thoughts and emotions. These crazy ideas don't last long, however, when the pain or fatigue reminds you - this is definitely NOT "all in my head."

Most people don't like to complain about their pain because they know it can be trying on their friends and families and also they don't want to appear weak.  Unfortunately, with ME/CFS & Fibromyalgia, the moment you stop complaining, your suffering is forgotten by many around you.  You look fine, so why shouldn't you feel fine.  When I first became ill, I complained all the time, trying to get sympathy from my husband who, I thought, didn't at all comprehend what I was going through.  I'm sure my complaints were interpreted in a different way from his point of view however.  Now I try not to complain as much or moan and groan when my pain is particularly bad and my husband is more likely to ask me how I'm feeling. I can definitely say our relationship is much better for it.

With no way for your spouse to directly experience what you are feeling, it all comes down to trust.  If a marriage is built on trust it has a good chance, I think, of surviving ME/CFS and/or Fibromyalgia.  It definitely takes patience and understanding from everyone involved.  Spouses have to learn to be patient with their ill counterpart and just as importantly, the sufferer has to be understanding and realize how difficult it must be for her spouse to see her hurting and not be able to do anything about it.  In a marriage where one of the two is afflicted with ME/CFS and/or Fibromyalgia, both definitely suffer, just in very different ways.

Being a Mom with ME/CFS & Fibromyalgia

My almost two year old daughter goes to a really great pre-school for toddlers.  Every once in a while I get asked to bake a plate of cookies or, yesterday, fill out Valentine's for the 22 total children in the program (including the regular pre-school).  These are tasks I can usually handle without too much effort but last week, one of the teachers asked if I would attend a parent's meeting later that week.  I agreed thinking it had to do with the financial problems the center was having and the talks of closing it down.  It turned out it was just a regular monthly meeting that I hadn't known existed until then.  I sat and listened to a recap of last months meeting which included plans for upcoming fund-raisers and holidays.  I started to feel uncomfortable as parents began raising their hands to volunteer for different jobs associated with the latest fund-raiser, a St. Patrick's Day Dinner at one of the local restaurants.  Another parent, who was a teacher at the local public school, talked about ways she could publicize the event to her students and other teachers.  I began to quickly realize that they were expecting a level of parent participation I simply could not offer.  I started feeling sad and weak.  I really wanted to be a parent that got involved with my daughter's activities.  After all, this was just the beginning.

I left the meeting thinking I would never attend another one.  Then I began imagining what I would do when one of the teachers asked me if I could help serve the St. Patrick's Day dinner or help with clean up.  Would I tell them I had Fibromyalgia and Chronic Fatigue Syndrome and as a result was unable to help much physically or even sit and collect entry fees or sell raffle tickets.  What would they think?  I have an idea it would be something to the effect of - "Fibromyalgia?  What is that - some diagnosis created to sell more drugs?" Or "Chronic Fatigue?  We're all tired lady, suck it up and give us a hand here.".  I quickly dismissed using those as explanations for my lack of participation.  My doctor had told me he thought I may have Mixed Connective Tissue Disease.  I could tell them this was my ailment because maybe it sounded more "real".  Maybe I could tell them I had Lupus.

My heart quickly sunk when I realized that doing this would only perpetuate the total lack of understanding that exists about Fibromyalgia and Chronic Fatigue.  I felt trapped.  My heart told me I had to spread awareness about the seriousness and "realness" of these diseases and not hide behind some more serious "sounding" disease so people would more easily understand my suffering.  At the same time I feel I don't have the energy for this fight.

I don't know yet what I'll say when I'm actually presented with a request for my help at the fund-raiser.  I'll only know when the words leave my mouth.

Many Many Drugs - Prednisone

Before my last doctor's visit a week ago, I sat down with all my medical records (a very thick file) and compiled a spreadsheet of all the medications I've been prescribed since this nightmarish ordeal began two years ago.  It took a while to organize all this information since dosages on some of the drugs had been changed several times.  When I was finished, there were still some holes in my timeline because I remembered that at times, my doctor had changed dosing over the phone and I hadn't written it down.  Anyone who has ME/CFS or Fibromyalgia knows that if something doesn't get written down, it's forever lost in the fog that took over where your brain used to be.

Two years ago, when I first visited a doctor about my strange set of life-altering symptoms, he ordered, what I didn't realize at the time, would be the first of many rounds of blood tests.  He guessed that I was having a response to some sort of inflammation.  He suggested I try aspirin to bring down the inflammation until the blood tests came back with some answers.  Everything came back normal including the Rheumatoid Factor except for the ANA titer which came back positive with a speckled pattern - 1:36 . 

When I went back a couple weeks later, my symptoms had gotten worse and more blood was drawn.  The doctor I saw this time (from the group) prescribed Prednisone at 60mg per day for five days then 10mg per day for fifteen days, then 5mg per day for ten days.  A few days after I started the Prednisone, I actually felt a lot better and was able to return to many of my previous activities including, walking up two miles of steeply inclined roads per day.  But, about a week into the lowered doses, my symptoms returned and I was experiencing a lot of pain and severe fatigue again.

My doctor prescribed another high-dose round of Prednisone which was effective but short-lived as before.  She explained that Prednisone was not a long-term option at this point due to the toxicity of the drug, so I went back to feeling sick and returned to the doctor once more.

Tune in next time for...drug number two! 

Lots to Catch Up On

Things had become so frustrating in my search for relief from this ailment that I even lost my enthusiasm for writing.  I just realized that it had been so long since I had posted.

I am currently staying with my parents in New Jersey and I've been here since early December.  I'm sorry to report that things aren't really much better.  I had planned on visiting my family for the holidays (as I do every year).  But when I found a specialist (Dr. Podell in Summit, NJ) on the Internet who's office is not 30 minutes from my parents house, my trip took on a second purpose. 

I've been here for about four weeks and have tried two different prescription medications (Nuvigil & Prednisone) and about three herbal supplements (potassium, DHEA & Zyflamend).  The prescriptions did little for my condition so the doctor told me to stop taking them.  I'm not sure about the supplements, but he said to give those about four weeks.  I've seen the doctor once for a two hour appointment and had numerous phone conversations.  He has a lot of experience with these "autoimmune mysteries" and has said that the only real way to find relief is through extensive trial and error.  Of course this concept is not new to me and has been how I've been living for the past two years.  He did find those elusive trigger points that my other doctors couldn't find so at least I now have a definitive diagnosis of Fibromyalgia, however, he thinks there may be other things going on as well such as Mixed Connective Tissue Disease.

I've been compiling and organizing all of my medical records for the last two years including blood work and medication history.  My next few posts will list this information as it may be helpful for anyone else out there who's going through a similar experience. 

I'm feeling very frustrated, discouraged and depressed.  I'm so scared that I'll never get better.

Can hardly lift my arm. So scared

Still in bed. Don't have strength to lift my head from the pillow. Sorry about the fragmented sentences. Typing this on my iPhone with only one eye opened. Can type a couple words then have to close my eye and rest again. Eye lids are so heavy I can only hold them open for a minute or so, then they close.

My husband is in the other room. Must think I'm just sleeping late. I'll have to text him since I can't call out to him. I feel like I must be dying. Would be a relief from this - whatever it is that's slowly rotting my body.

As I lay here in pain and profound weakness I hear the joyful cheers of spectators outside my window as athletes in a triathlon victoriously cross the finish line. Oh my god.

Falling Further Down the Black Hole

My depression has reached a critical level. I don't give a crap anymore about trying a new diet, medication or anything for that matter. I haven't felt this low in a very long time. I physically feel terrible and there isn't much left in my life I have control over. I'm blessed to have a wonderful therapist who I've been keeping in regular contact with and who is closely monitoring my situation. I'm still taking about 10mg of Cymbalta per day and can't seem to lower he dose much more without suffering withdrawal.

I made the decision today that I will no longer be able to fulfill my responsibilities as manager here at the hotel. My cognitive impairment has gotten worse and worse. I spent quite a bit of time today on the phone apologizing to guests who apparently had made reservations but that I had no recollection of, or paper work on. I'm not used to making so many mistakes. I have often, in the past, held positions which required serious detail orientation, commitment and work ethic and are qualities I have always prided myself on. I guess those days are gone and hopefully only temporarily.

My marriage is seriously on the rocks and shows no sign of getting better. Now I'll be almost completely financially dependent on my husband and just the thought seems to choke off my air. My almost stubborn self-sufficiency is something I have also had pride in. There are some people I wouldn't mind having to depend on but my husband isn't one of them. I know he'll rub my face in it and it'll become a game of trade-offs. He pays for stuff so I'll have to do things for him in return. It's already that way to a large extent and will only get worse.

So, I'm not able to take care of my daughter, I'm not able to do my job and I'm not able to do things that need to be done to upkeep our home. What can I do? Not much.

I have yet to call the owners of the hotel to tell them I'll have to take a medical leave. That's going to be yet another humbling experience that I think I'll save for tomorrow.

Crashing Down Off the Alpha Nutrition Wagon

Okay so it's now day 7 on the Alpha nutrition diet. My mental state has made it very difficult to maintain any type of discipline. Yesterday I didn't write down anything I ate or any of my symptoms although the severity of my symptoms don’t seem to have changed much. Today I also did not write down anything I ate or any of my symptoms and I ate an entire small pepperoni pizza which made me feel like I was going to puke for about an hour.  The pizza was a bit too well done but it still tasted good!

Last night I intentionally skipped my 20 mg Cymbalta dose for the first time. I felt okay until the late afternoon today when I started feeling lightheaded and nauseated. These symptoms got worse as the evening progressed so I decided to take a pill to minimize my discomfort. It seems to have helped with the nausea but I'm still a bit lightheaded. My plan is to take the 20 mg dose as soon as I begin to feel lightheaded.  Hopefully the duration between doses will get longer and longer until I can stop taking it all together.

I wrote this in one of my previous posts and I’ll write it again.  Cymbalta is evil!  I wouldn’t recommend it to anyone.  It’s a very harsh drug with very harsh and dangerous, even life threatening side effects. If I had gone through with some of the crazy, violent obsessions going through my mind the other night, my life would either be over or I would be in jail. I’m not exaggerating in the slightest.  Since the episode three nights ago, both my therapist and medical doctor have been calling regularly to check up on me and are very concerned about my mental state.   As I’ve mentioned several times before, I’ve taken many different drugs for depression and Fybromyalgia and this is one of the worst!  I can’t wait till I’m completely free of it.

Day 2 - 10/20/11 - Alpha Nutrition Diet for Aching and Fatigue

Still feeling about the same or worse.

Symptoms (0=mild to no discomfort 10=most severe discomfort/ pain)
10:00am
Shortness of Breath - 5
Fatigue - 7
Headache - 0
Backache - 5
Heart Murmurs - 5
Eye Pain - 2
All-Over Body Pain - 4
Sore Throat - 3

Food Log
8:30am -  1/2 cup rice cereal, 1/2 cup rice milk, 1/3 cup ENF formula
9:30am - 4 peach slices
11:00am - 1 cup broccoli & carrots, 1 cup rice
4:00pm - 1 cup rice, 1 cup broccoli & carrots
6:00pm - 1 cup rice, 1 cup broccoli & carrots
8:00pm - 1 cup rice cereal, 1 cup rice milk
9:00pm - 8 peach slices

Medications taken at bedtime:
Cymbalta: 20mg, Welbutrin: 150mg, Lorazepam: 2mg

Coming Down Off Cymbalta

I don't know if I'm feeling the way I am because I lowered my Cymbalta dosage or if it's just one of those "fibro-lows".  Last night I sat on the floor in my scalding hot shower and cried, my body hurt so much.  I'm really feeling terrible.  Everything is worse from joint pain and all-over body pain to headaches, fatigue and weird symptoms like eye pain.  In my misery last night, I decided that I would start the "Alpha Diet" today because I had to find some relief and I didn't have any time to loose. 

According to the Alpha Nutrition book by D. Gisalason (although it does encourage flexibility), those who are suffering with severe disease should follow the "slow track" and begin with ten days of fasting while only taking liquid nutrients.  I didn't want to begin fasting until I was completely off my medications, so I've started eating only "Phase One" foods and liquid nutrients and plan to start fasting when my body is drug-free.

The list of Phase One foods is VERY limited.  I think there are thirty-three items on the list and that includes olive oil and at least four derivatives of rice (rice, rice cakes, rice (only) cereal, rice crackers, etc.).  Basically the Phase One diet includes certain vegetables, peaches, pears and rice.  I'm doing ok with it today but can see this getting really old really fast.  So far I'm still feeling like shit symptom-wize but I realize it may take at least ten days to feel any relief.  I'll be keeping my food and symptom journal here on my blog.  The journal entries will be titled "Day One", Day Two", etc.

If this doesn't work I don't know what I'll do.