CFS & Fibromyalgia Is No Joke, But We’re Treated Like It Is

I have a lot of fun joking around with my co-workers and some of the people I work with like to comment repeatedly about the fact that I work such limited hours. I often hear:

• “It must be nice to only work one/two days a week”.
• “It must be nice to not have to work a regular job for a living”.
• “Why not get a real job like the rest of us?”

I always take it in stride and have fun, and make joking comments back and my favorite comeback is usually, “If you take my illnesses then I would gladly take your work schedule”.  No one wants to trade, however!  I had a conversation today with one person who said he has a “hard time” believing in the illnesses that I have.  He said everyone has “chronic fatigue” and when he was a kid there was no such thing as “fibromyalgia”.  People were just in pain.  He said that he was tired too when he left work. 

I tried to explain to him the difference between what the illness “Chronic Fatigue Syndrome” is and what normal fatigue is.  He still didn’t get it and probably never will.  I finally just said, “If you lived with me, you would believe it.”, and I walked away.  When someone says they have cancer, multiple sclerosis, or another disabling disease, no one questions it.  When we talk about our illness, it’s like we are constantly defending ourselves over and over again.  Then when I went on break I found myself feeling “less than” because once again someone doesn’t get it.

But then I had my own little pep talk:  I know who I am better than anyone.  These people I work with see me a few short hours a week.  They haven’t known me over the last 20 years.  I’m proud of myself for trying.  I work when I’m able to work, no matter how little it may be.  When I can’t, I can’t.  I think that ought to mean something.  None of these people saw me working 10 – 12 hours a day or longer, 6 and 7 days a week for years.  They have no clue what my life has been like, what I have been through and I don’t owe explanations to anyone. 

I know there are people I work with who see that I try and that I work hard even with the physical restrictions that I have.  But I’m through with the days of feeling like I have to prove that I can do it all even though I physically can’t.  I’m not taking that road again for anyone.  It’s not worth it.  My family needs me too much and I will not ruin myself to prove anything to anyone anymore.

Weight Loss Will Not Cure ME/CFS or Fibromyalgia

I have been successfully losing weight since I started on the Medifast program almost 2 months ago – I started June 20th.  I have lost a total of 23.5 pounds as of today and I am super excited and have felt better than what I have felt in a very long time.  But I am still sick with ME/CFS & Fibromyalgia and I can’t forget that.  I believe that the combination of the weight loss and the new Synthroid medication has given me more energy but I always know that the CFS & Fibromyalgia are there – lurking, waiting to come out and grab me. 

I am happy I have been feeling a lot better but there is always this sense of doom lurking in the back of my mind – no matter how positive I try to be (and for the most part I believe I am pretty positive about the whole thing), I can’t help but keep wondering how long is it going to last?  I started noticing last week, especially when it was so hot, that I was feeling more run down again and I’m not feeling as rested as I was when I get up in the morning.  To me that is always a warning sign that I need to be careful and slow down.  One of my defininte ME/CFS flare warning signals is when I have been sleeping well and I still wake up and feel like I need more sleep I know I need to take it easy.  We have been having such an awesome summer here and I hate to have to stop now…I keep praying that this doesn’t end.  I want to keep feeling better and better. 

A misconception that a lot of people have and even medical professionals have is that overweight or obese CFS and/or Fibromyalgia patients wouldn’t be sick if we were at a healthy weight.  I was told this at a weight loss clinic one time and I have heard it from doctors also.  I had to inform all of them that I was at a very healthy weight when I first became sick and I was sick for almost 10 years before I started having weight issues so that is nothing but a load of crap.  I do know that carrying the extra weight doesn’t make us feel any better and yes, it definitely made me feel worse, but being thin is not the cure.

This is also my own personal experience, but I notice that my knees are not hurting as bad as they were.  The 23.5 pounds off have done a world of good for the arthritis in my knees.  I still have a lot of leg pain (thanks, Fibro!).  I am hoping that more weight loss, massage and walking will help with that.  I am also more flexible.  I was cleaning out my mini-van the other day and I was able to climb in and out a lot easier.  I was wore out, but it was easier climbing around!  There have been a lot of positives to losing weight but it irritates the crap out of me when people assume that losing weight is going to cure these illnesses.  I wish it were that simple.

Heat & Humidity Affect My CFS & Fibromyalgia

I have been feeling pretty good here lately but on the days that are really hot and humid I am reminded of my enemies –  CFS & Fibromyalgia.   Yesterday and today have been a couple of really rough days for me as far as the major fatigue and pain.  It reminds me somewhat of the cold, wintery days when I can wake up and know that it is either snowing or really cold out because my body feels the temperature – it’s the same with the heat and the humidity.  I woke up yesterday and this morning with a bad headache and in a lot of leg pain and I knew instantly that it was hot and humid outside. 

This is what sucks about CFS & Fibromyalgia – it doesn’t seem to matter what time of year it is, what season it is – there is always something about the weather that affects our bodies and makes these illnesses flare up.  Temperature sensitivity is a common problem among ME/CFS & Fibromyalgia patients.  Some of us can’t tolerate the cold weather, some of us can’t tolerate the hot weather, and others of us (like me) can’t tolerate either.  My fingers, ankles and legs will swell up like crazy in the heat and that just makes the pain that much worse.  In the winter, I feel like the cold goes right to my bones.

I do not only feel more of the CFS exhaustion in the heat, but I also feel more of an overall sluggishness and tiredness that is different from the CFS exhaustion and fatigue we normally experience.  I want to sleep more also.  I have been having a lot of problems staying awake the past two days.  The only thing that I have found that helps is to get a massage or take a dip in the pool at my sister-in-law’s house once the hottest part of the day is over.  Today I was too tired to do even that.  I keep the air-conditioner on and the house very cool but on days like this it doesn’t seem to cool as well. 

I drink a lot of water but I always feel dehydrated on these really hot and humid days also.  So in addition to being extra tired and wanting to sleep more, I then am constantly running to the bathroom because I’m drinking extra water and I end up wearing myself out more because I don’t get the rest I need because I’m up every 10 – 15 minutes.  It’s a mess. 

I would love to hear some suggestions as to what others do to keep their bodies cool and if you have found ways to keep your symptoms minimal during the summer heat.

My Sister Has Diabetes

My sister found out last week that she has diabetes.  I had been telling her for a couple of months that she needed to have her sugar checked because she was having symptoms:  thirst, excessive hunger, weight loss, and fatigue.  But she hadn’t been to the doctor in 2 years and she’s like my mother and doesn’t like to go to the doctor’s office.  Finally, I had my husband take her blood sugar and it was 276.  She then decided to make an appointment and they called her the same day she had her blood work done and told her she was diabetic.  Her range was a 10.5.  She doesn’t have to take the shots but she is on two pills a day along with pills for high triglycerides.  The doctor put her on an 1800 calorie a day, fat-free, sugar-free diet.  She is losing weight pretty quickly right now but I’m sure she will level off once they get her insulin adjusted. 

It scares me to think that probably in another year I would have been in the same place if I wouldn’t have done something to get mine under control now.  My sugar was starting to get high but with having chronic health issues, I’m always having blood drawn so it’s easier to keep an eye on my glucose levels.  Hopefully, I’m out of the woods for now and I’m going to do whatever I can do avoid having to become diabetic if I can.

Update from Endocrinologist Yesterday – Good News!

I had my follow-up appointment yesterday with the endocrinologist and he was thrilled to see me doing so well.  He immediately noticed the weight loss (20.2 lbs. lost so far!)  and was happy to report that my sugar had dropped a total of 17 points so I am now officially out of the danger zone.  I started using the Medifast weight loss products about 1 1/ 2 months ago and I have seen a huge improvement in my health, weight and overall energy levels. 

The endocrinologist had also changed my thyroid medication to Synthroid but I fully believe that the majority of my results are coming from the diet.  I have talked to another CFS and Fibromyalgia patient who is also on the same diet and she reports the same improvements as I do:  increased energy, not tiring out as easily, when we do have flares they don’t last as long and we seem to come back quicker.  I know that it is no cure and that I won’t be healed, but I am thrilled to be feeling and looking as well as I have been!  My husband is amazed in the difference and the doctor was so thrilled yesterday he actually hugged me! 

I don’t have to go back and see him for another 6 months and I hope to have all of my weight off at that point and then he really won’t know how to react!

Increase In Low Back Pain with Weight Loss

I know this sounds weird whenever I tell people but the more weight I lose, the more my lower back hurts.  I have degenerative disc disease and some herniated discs in my lower back and arthritis as well.  I also have some herniated discs in my upper back (between my shoulder blades) and in my neck.  The pain is getting worse throughout my spine as I lose weight, but I notice it the most in my lower back.  I have lost 20 pounds since the beginning of June and I have always found that in my own personal experience, the less I weigh, the more my back hurts.  I know – it doesn’t make sense – doctors look at me like I’m nuts – but the pain I feel is very real and it is getting worse.

I feel better otherwise – I have more energy, my leg and knee pain has decreased – but the back pain is worse.  I am hoping that someone will read this and will be able to tell me that they have heard of this happening to someone else they know or something.  Any thoughts?

My Life Is Always Complicated: Now Have To Worry About Potential Skin Cancer

It seems like I can never get ahead no matter what I do.  I start to feel somewhat better and have actually been doing fairly well over the past month and then I go into the dermatologist yesterday for a routine Rosacea check-up and find out that I had four areas of what she believes to be pre-cancer on my body.  It’s a good thing that I pay close attention to my body because I just had a full body skin exam last year and I was fine.  I had been noticing over the past several months that on the back of my left shoulder that I had a patch of skin that was raised, kind of pearly and scaly looking that has felt rough, itchy, and would not heal up and go away.  I would put lotion on it like crazy but it wouldn’t go away.  Over the past month or so I noticed that the area was spreading so I figured I would have the dermatologist take a look at it.

The dermatologist said that the affected areas I showed her were over very sun-damaged skin (from bad sunburns as a teenager, but not intentional.  I fell asleep in the sun.).  She froze the areas and I have to go back in 3 months.  If the areas have dried up and healed (they are really black right now since she froze them), then I should be okay.  But I have to have a full body exam when I go in October to check everywhere else.  If the areas are not healed, then I guess a biopsy will be necessary. 

When will things ever be simple when it comes to my health?  Will I ever see that day?  I am just glad that I pay attention and don’t mess around.  If I would have let this go, it could have turned into something far more serious before it was caught.

Next Page »