Having one chronic illness like CFS or Fibromyalgia can be complicated enough. But then add to it one or more additional chronic illnesses and it feels like your whole world is turned upside down. I know there are many days I feel like the picture above – in a maze of symptoms that there is no way out of. My life first came to a halt by ME/CFS, next it was Fibromyalgia added to the list, and next was Interstitial Cystitis. Then in between being diagnosed with these three major chronic illnesses were complications diagnosed because of them: IBS, advanced DDD, BET, and TMJ.
It can be hard telling from one day to the next when you have multiple chronic illnesses which symptoms are coming from which illness. Some of them are easy but others can be more difficult. I know when I feel like I have a bladder infection, I have frequent urination, etc. that my IC is acting up. But what if you have body pain and you have both ME/CFS and Fibromyalgia? How do you know which illness is causing the pain? With having ME/CFS more severely than Fibromyalgia, I have been able to distinguish when I have pain which illness it is coming from.
In my own situation, I have found that my chronic headaches come from ME/CFS. I had ME/CFS first so this is how I know which illness the headaches are coming from. They haven’t changed any since the Fibromyalgia began and the pain isn’t any different. The one thing I have noticed in my own personal experience, is that wherever the body is weak, ME/CFS tends to seek out those areas and cause a pain that is much deeper. For example, I hurt my back when I was 18. Once I became really ill with ME/CFS, I found that during my flares my back would hurt a lot worse. It still remains that way.
The pain I get from ME/CFS feels more like pain down to the bone. It is very deep, it’s hard to pinpoint an exact spot but I know that the area hurts. It is more like a gnawling, exhausting pain if that makes sense. It is a weary type of pain. The Fibromyalgia pain I experience is painful to the touch on the very surface of my skin. I can put my hand on an area that hurts and the lightest touch will cause me to jump.
For me, the ME/CFS pain is harder to treat and is what painkillers don’t work as well for. The CFS pain also lasts longer than the Fibro pain. The Fibromyalgia pain responds better to pain medication than the CFS pain, but it still doesn’t go away. The pain is always there. I know that everyone is different and your experience might be totally different than mine. But this is how I perceive the pain with my illnesses.
I have the same problem but with lupus and fibro. Which one is causing my fatigue today?
I have always wondered this very thing – thank you for explaining it! It’s odd though how fibro pain is expressed or described differently. I know a lot of people who describe it as you do – surface-focused — but I also experience it like the malaise that comes with the flu.
Fibromyalgia is a syndrome that is characterized by a number of different symptoms. However, one of the most dominant fibromyalgia symptoms is definitely pain.
Thank you for describing your different types of pain. At the age of 29, I had Mono. My doctor refused to run tests, and then I saw someone else in his practice and convinced them to run test…low and behold I did have it.
I have not been the same since. For 10 years now I have lived with the after effects. They say you will “recover after 2 months”…but I have had recurring symptoms for years. It goes in cycles and I can feel a flare coming on, or sometimes will come on like my energy is light switch being turned off with no warning at all.
I look at my day’s energy like a glass of water, I only have so much.
Moving from pillar to post, can be excruciating. The only thing that might get me to “go” is 2 advil and a ration of Red Bull. I drink half of the can, and if I don’t feel better in 1/2 hour I have the other half. I really only have 1 a day, and that is only on my really bad days…. it doesn’t always work like today, but sometimes it can.
At first I felt that perhaps my Mono turned into Fibro. Not knowing anything about Fibro , I looked around and none of the symptoms in pain sounded like what I had.
People can hug me or touch my arm, and I don’t hurt. But me moving on my own is painful. I was confused, and just figured I had “reoccurring mono”, and try to wade thru it like wading thru peanut butter.
It wasn’t until you described your pain , of “deep to the bone ache, that has no specific area, but I know where it hurts” that I have something that sounds exactly like the pain I have. At one time I considered CFS, but with the varying symptoms, I thought it was a dead end for me to label, like Fibro was.
Your post has actually given me something to go forward with in where I need to go for answers.
I truly thank you. You have given me something to go on.
I don’t know that there is an actual difference in fibromyalgia, ME and chronic fatigue syndrome. The way you describe your ME symptoms is much the same as what I feel with fibromyalgia. It seems that in the UK there is more likelihood of being diagnosed as having ME and in the US it is fibromyalgia. Unfortunately no matter what it is called or what symptoms cause the most problems for a particular person it is still not understood at this point. It is impossible to treat these often crippling symptoms without knowing more. It is why there are so many treatment options and the many posts from the hundreds who suffer that aren’t usually helped to any great extent. There is still the stigma of having a disease that many don’t believe is real or is a physcological problem rather than a physical one. Sadly the cause has to be widespread and easily triggered when so many people are affected. Although it so often causes major disability and such horrible consequences I still don’t see the reaction to these problems as nearly what it needs to be. I have had fibro? for nearly twenty five years and a near fatal accident 13 years ago has me barely living life and just trying to hold on. The difficulties have progressed with each passing year. I have done most everything possible to try to fight the symptoms and keep going. I have always been able to hold on to hope that the answer may be just around the corner but it gets harder each day to keep going and fighting. I just want one good day in a month at this point and now I only seem to have those two or three days a year now. A good day still involves great pain and is normally more like a few good hours but when it happens I feel so different, like the real me again, if only briefly. It is great but it makes me even more frustrated with the idea that I should feel like that on a regular basis and how much better my life would be if only that were the case.