CFS, Fibromyalgia & IC Symptoms Worsen with Common Illness & Menstrual Cycle

I wish I had a long, clever, in-depth answer as to why our symptoms get worse when we have a common ailment like a cold or the flu, or when we have our periods but I don’t.  The only thing I know is that it totally sucks, especially if you’re a woman and it’s that time of the month.  What sucks almost as much as a worsening of ME/CFS, Fibromyalgia & IC symptoms is trying to explain to your boss, co-workers, or anyone else who depends on you for things as to why you can’t come to work or have to back out of a commitment.   Trying to get away with saying just the easiest explanation of “I’m sick” usually doesn’t offer enough information.  When we go into further detail to try and explain our absence, the thoughts that normal people think are:  “I/other people work with their periods/colds.  Why can’t she?” 

My answer has just simply become “I had a flare” and I leave it at that.  There’s no use trying to explain that a cold, the flu, another common ailment, or your period caused you to relapse.  No one gets it.  I don’t even get it sometimes. 

In my own personal experience, my period causes a whole flood of symptoms to reappear that seem to go into hiding other times of the month.  My Interstitial Cystitis symptoms take over and my already few hours of sleep a night lessen even more with the increasing nighttime bathroom visits.  The one bright spot of my cycle is the worsening of fatigue (I know – how can CFS fatigue POSSIBLY get any worse?) does cause me to sleep more, but it’s usually during the day.  But I’ll take it where I can get it.  The pain and weakness in my body is excruciating and my prescription pain pill count increases for the first couple of days during my cycle to help get me through.  CFS headaches become so bad that the slightest noise causes major thumping and pounding in my head.  The normal night sweats from the CFS become like a visit to the sauna the first couple of cycle days and I can’t seem to take enough off to get cooled down.  I keep the upstairs as cool as I can and if it weren’t for my family, I would have the windows open in the middle of winter. 

Just thinking about going to the gym will make my thighs and back hurt.  I have been faithful with going every other day.  Today was my day to go but I couldn’t even muster up enough strength to get dressed let alone get to the gym to exercise. 

How about the common cold or the flu?  A cold will cause the bladder to spasm like crazy in an IC patient and the pain is sharp and stabbing.  Trips to the bathroom increase and we may have to wear Depends or pads in order to keep from wetting through all of our underwear everytime we sneeze or cough.   In a Fibromyalgia or CFS patient, a cold can leave us with extreme fatigue and stuck in the house wrapped up with a box of tissues for longer than the normal person.  The flu is even worse.  When I get the flu, it can take as long as weeks to recover.  The vomiting and diarrhea will end long before the strength comes back. 

There are a lot of us CFS, IC & Fibro patients who really fear getting sick because we know that we can’t just get back to normal living after a few days.  I have become very paranoid about germs and being around people who are sick.  I get really upset if someone who knows my history comes around me or brings their kids around me when they are sick.  I find it disrespectful and rude and I can’t help but get annoyed by it.   I know some people think I worry too much about germs and getting sick but they don’t have to deal with it like I do. 

I won’t even volunteer as much at my son’s school as often as I really could because of being around all of the kids, the colds, sneezing, coughs and germs.  The schools are a breeding ground for sickness.  I make Logan take hand sanitizer and he gets quizzed frequently to find out how often he is using it, when he uses it and if anyone in his class is sick.  When he gets sick or someone in his class is sick, I get sick. 

Chronic illness, colds, flu and menstrual cycles do nothing but cause even more misery to already unhealthy lives we lead.  I want to be happy and to feel good.  I get so frustrated when I have more of my time spent wasted on the couch or in bed.  I want to be useful and for my life to have more meaning than this.

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Comments

  1. Tiffany D Hood says:

    THANK you sooo much for posting this!! This is MY story also. I know of several other Lupus patients that experience the very same life … Thank you for putting it into words 😀

  2. This speaks volumes about what it is like living with a chronic illness. I also suffer from Fibromyalgia, Interstitial Cystitis, and Chronic Fatigue. It’s impossible to explain to co-workers how/why I am sick all of the time. I thank you for trying to inform people of the toll these debilitating illnesses take on their patients.

  3. thanks for your input. yea it seems that i get soooo much worse just from the common cold and the pain and misery are unbearable. no one gets it, how a little cold can be so debilitating. i do know that after menopause, my relapses diminished substantially, but the other stuff like the ic and ibs got worse. when i begin to feel almost normal, and think that i should seek employment, then i have another relapse. the pain and fatigue are the worst part, but the misunderstanding is hard to deal with and causes self doubt.
    i understand you all.
    breni

  4. You really covered how terrible these diseases can be. Especially the last part about wanting your life to have more meaning than this. I have FM so terrible and when I get sick, its intensified by 1000x’s. My children have to cope with helping extra, my husband has to pull more around the home. In general I feel irresponsible and like I am whining too much. Its taken a toll on quality of life so much. Thank you for making me feel not alone.

  5. I’ve been reading several of these posts. A friend I didn’t think was listening..sent this site to me. I guess he WAS listening! I have tears flooding my eyes from the profound feelings your posts have given me. I have been diagnosed with FM and CFS by three different rheumotologists. I have the sore jaw too, but haven’t been diagnosed.

    I just want to respond to each one of the posts! Lol’s. It doesn’t make me feel any better to know so many are hurting…including now, my eldest daughter. She finally understands! Isn’t that awful? It makes me feel very guilty that at last a family member actually understands, and she had to get it first.

    Someone mentioned the need to give ‘gentle hugs’. Almost like MS! Yes, my best friend talks with her hands, and every now and then I get a poke in the arm, and double over with the pain of it. She is learning to be gentle. But it is an uphill battle.

    This past summer I visited for a month, with two of my sisters in Oregon. One of them asked the other if she believed I really hurt as much as I made out. It hurt so much to know she doubts me. I wish the other sister had answered ‘yes’. But she answered that people perceive pain differently! That is no answer at all for us. It isn’t perception. It is an actual signal sent from the brain differently and painfully to us, where the same pressure feels like nothing to a well person.

    I learned recently from my unending search for answers….that the reason a muscle cramp hurts us so terribly, is because the cramped muscle spasms for a long time…burning and burning. Muscle relaxants work, but it takes a long time for them to take affect after taking one! ; / I do feel the spasms coming on though, and am learning after almost 20 years, what will bring them on. I love doing the things that cause them, which is mostly maintaining my home and yard. So I do them anyway, and then pay for it. And of course there is our ability to predict a change in the weather!!! A cold weather front is a sure bet for building muscle pain…neck, shoulders and arms..and hands, for me.

    I do have a good pain management doctor, and a GP who also is informed on FM, so I have the support I need to keep going. Reading of others experiencing the same things make me feel so deeply for them and I sure hope for future knowledge that will be better for managing our problems.

    • Hi Glenda, I am so glad you found the site and a friend was listening! Feel free to continue reading and please pass on the link to whoever you think could benefit (even people who you feel don’t believe we are sick). Take care of yourself and please comment and email me whenever you feel the need!

  6. Thanks for putting your thoughts into words I also suffer from Fibromyalgia, Interstitial Cystitis, and Chronic Fatigue. It is very difficult to explain why I am sick most of the time ans yes it does take its toll on the people around me.

    keep up the good work
    Brenda

  7. I was diagnosed with fibro in 1998. At that time most docs I visited didn’t believe in a fibro diagnosis. There was no medication which targeted fibro symptoms. As a psychotherapist I only had to sit in a chair to work but at the time I couldn’t even do that. But I did, with the help of a massage therapist, dietary changes, targeted exercise and stopping the birth control pills I was taking I became 80 % better. While I had to leave part of my practice behind in NYC I worked from home and took on a part time clinical job ft of help pay for benefits.
    At that time I had to hide my symptoms ( splints for carpel tunnel, severe brain fog and confusion and of course the depression that accompanies fibro) and I was terrified of catching anyone’s cold, flu, sore throat etc because I had to go to work to support myself.
    There was no disability for a diagnosis nobody believed in.
    I am so glad there is an acceptance of this disorder ! I am also glad I pushed through many of the debilitating times I experienced. And while I still have the aches, pains and exhaustion ( I wonder what I could have achieved without them). I continue to live and work and feel grateful for what I can do to help myself and others.

  8. Thank you for this post about cold and flu and how it affects us worse and people really don’t understand. At least we who read this website understand and I can take comfort from that. so thank you 🙂

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