The Chronic Fatigue Syndrome and Fibromyalgia Symptom Description Thread

[Cort]

Methadone...I decided to try it after speaking to random people and finding out they had FM too, but they were working and seeming living normal lives.
I asked how and the answer was always the same: Methadone. Plus my PCP's medical assistant had FM and she was on Methadone. Like I said, life changing.
Now I'm dealing with the downside. My body has adjusted to the dose and, albeit on I'm a very low dose, do I want to get into the cycle of upping the dose,
adjusting, then increasing the dose again? I'll tell you, the relief I felt from the methadone was like heaven. Never have experienced any "high" from it, just
pain relief, fog clearing, and tons of energy. Over the past month I've really felt my body adjusting. Sad Sad Sad :-(. It's a huge issue, complex in every way.
Do you just accept that to live a better life, you'll have to continuously up the dose, or just quit here and go back to the despair of hopelessness?
PS: Please no comments on the dangers of taking pain meds. Believe me I've did not come upon this decision lightly, it saved my life literally.

An ex-girlfriend with horrific back issues and FM had a similar experience to you. I don't think she did as well but methadone was her drug of choice. She was quickly tolerant of all the other opiate drugs...

 

[Marney]

Hi all, I experience the 'muscle coming away from the bone' type pain in my legs too! that's exactly how I describe it! I also feel the burning sensation (mostly after walking upstairs too fast) .
Pain-wise I also get pain in my jaw and face
Is this all FM?
My doc has not very descriptive if what it actually is/feels like, and I'm new to my diagnosis. I'm low level apparently, but it's getting gradually worse (though I've been told it's not progressive?)

I also have a strange symptom, that though I've had it all my life (like my hypermobility) I wonder if it's related? If anyone touches my rib area (like my little nieces trying to tickle me) though I know the touch is really light, it really hurts and for minutes afterwards. Any clues on that?

 

[Cort]

Hi all, I experience the 'muscle coming away from the bone' type pain in my legs too! that's exactly how I describe it! I also feel the burning sensation (mostly after walking upstairs too fast) .
Pain-wise I also get pain in my jaw and face
Is this all FM?
My doc has not very descriptive if what it actually is/feels like, and I'm new to my diagnosis. I'm low level apparently, but it's getting gradually worse (though I've been told it's not progressive?)

I also have a strange symptom, that though I've had it all my life (like my hypermobility) I wonder if it's related? If anyone touches my rib area (like my little nieces trying to tickle me) though I know the touch is really light, it really hurts and for minutes afterwards. Any clues on that?

That light touch and pain response really sounds allodynia-like...

I get the burning pain in ME/CFS after "exercising" too much. It's a nerve related symptom.

That muscle bone pain description is about the scariest on this thread - . Good luck with that

 

[Martinigal]

An ex-girlfriend with horrific back issues and FM had a similar experience to you. I don't think she did as well but methadone was her drug of choice. She was quickly tolerant of all the other opiate drugs...

I wonder if it helped with her back issues. It doesn't help me with my back, my feet or any pain that has an origin other than Fibromyalgia. I still have plenty of pain, but the aches are still gone and my energy is still better, but I'm definitely noticing a change :-(. Thanks Cort!

 

[VJ Knutson]

Fibromyalgia is relentless in it's ability to cause pain and dullness. For me it feels like:
You have that horrible flu, you ache to the bone, you're on the edge of what's real and what's not
You're feet make standing or walking too long simply impossible. The pain causes me to go some where else in my brain, I'm in a bubble so I can survive. This is especially bad if I'm stuck some where, no place to sit. This drives me further into a feeling of choosing to be house bound.
Waking up in the morning is horrible. You look at the clock and see that it's so late in the day, the fog fills the space where I've just had another terrible dream, of the
person I used to be. And in this dream all my loved ones abandon me, as has happened in my real life. My lower legs feel as if somehow I've managed to move my feet like Linda Blair's head, the pain from my knees to my ankles is so bad. My feet are numb and my back may or may not support me when I get up.
My walker waits for me.
I tackle the day by walking, half bent over to make my coffee. I then head over to the sofa turn on the heating pad and set it up so my back can relax as well as all the
muscles which have tightened up so badly through the night. I think I get really frustrated during my nightmares and I dig my fists into my head and my fingers
sometimes get pushed through the metal vine of my headboard.
All day long I fight the flu that won't get better, the pain in my muscles that won't get better and the complete fog I swim through that never goes away. I used to be smart, the cognitive losses are emotionally painful.
As the day wears on I will deal with a needle which happily boars through out my chest. I will try to move and my hips will scream, how dare I try to make my body
work. Don't I know I'm not "normal"?! That my body has chosen this mutation and I have NO SAY IN THE MATTER. I am trapped inside my self and I am
disappearing. A little more each day.
I've been hospitalized several times for my back, my hips and Pneumonia. Once Pneumonia and meningitis.
Suicide is definitely an option. I was the life of the party, now there is no party, just sadness, and pain as my constant companions. I have horrible health care, even
worse mental health care. I have my stash so I can go when I'm ready, but some where, in the mind that I'm losing a voice tells me I'll go to Hell. But I'm already in
Hell, I tell it. Oh, just you wait and see, it says, Hell makes this look like a vacation in Bali. So I don't go to my stash. Due some strange Christian belief
but I'm not a Christian, I don't believe in all of that and I don't, but for some reason there is this little voice. And even that seems like Fibromyalgia.
How unfair is that, to only be taking up space in the world and not being allowed to chose my exit strategy, which I've really needed the past couple of weeks.
But I'll wake up tomorrow and go through it all again. For, as much pain as I suffer, as much of my brain that's gone, the worst really is emotional. To live in a constant
state of depression without a single person knowing how I feel is more difficult than any physical thing in my life.

So sorry you are going through this alone - how long have you been living with the disease?

 

[VJ Knutson]

Cort, if I remember correctly, you have ME, not Fibromyalgia, right? I feel silly asking this but is ME also painful. I relate it to Chronic Fatigue Syndrome, where fatigue is the main complaint. Am I wrong? I'm only trying to learn. I know people with ME have other issues like food intolerance, chemical sensitivity, those kinds of things, but I never knew that ME also is accompanied by pain. And, if so, what then is the difference between FM and ME? The intensity of the fatigue? Please help me understand.

I was diagnosed with Fibro 5 years ago - constant, unbearable pain and swelling all over. Then last year, one doctor diagnosed CFS, but my family doctor, who also has the disease said I am more in the ME side of the spectrum. She says at this level the myelin sheath is affected, leaving the nerves unprotected, thus making all stimulation and stress unbearable. I like the new term - SEID - better as it says it well: Systemic Exertion Intolerance Disease. I understand my FM as a separate, although often co-morbid entity. I think the symptoms and the lack of diagnostic markers means that these diseases all get rolled into one.

 

[Martinigal]

So sorry you are going through this alone - how long have you been living with the disease?

Thank you so much for your kind reply Vj. I have been living alone with dire health since 2008. I had some problems in 2008, but my journey with FMS really began in 2009 with my diagnosis of Breast Cancer in March of that year. Before I was done with my radiation treatment in May, I had a CAT Scan that showed 4 P.E.s in my lungs so I was taken by ambulance and had a very long stay in the hospital. After that I was diagnosed with a genetic heart disease and had open heart surgery in September of 2009. I never did recover to my full potential after that. I have an emgergent Thiamine deficiency and then finally I was diagnosed with Fibromyalgia in 2010.

 

[VJ Knutson]

What a scary journey. Interestingly, I had a lumpectomy for breast cancer before my diagnosis also - I think I read once that surgery can precede the onset of this disease.
Tell me about the things that keep you going. What brings you joy (even if only a small thing.)? I try to make sure I have a bit of chocolate tucked in my bed table drawer, for instance, so that I can steal a moment of wicked pleasure - ha ha.

 

[VJ Knutson]

I heard something about this just recently. Apparently because of the inflammation on the brain associated with ME, they are finding that opiate blockers are needed to make antiviral treatments affective. Not sure if I have this correct - my brain is still a fog, lol. Did you take the methadone in conjunction with anti-virals?

 

[Martinigal]

What a scary journey. Interestingly, I had a lumpectomy for breast cancer before my diagnosis also - I think I read once that surgery can precede the onset of this disease.
Tell me about the things that keep you going. What brings you joy (even if only a small thing.)? I try to make sure I have a bit of chocolate tucked in my bed table drawer, for instance, so that I can steal a moment of wicked pleasure - ha ha.

Yes, trauma of any kind, like have 3 major diseases in one year, is definitely an opening for Fibromyalgia to get it's little claws into you. Also car accidents seem to make one "primed" for FM.
I don't know what keeps me going really. It seems that keeping my environment clean takes up most of my energy. And the good days always give one hope. I had a really good day today. Tons of energy, got so much done! I'm no sure I have much joy in my life. I do feel very happy when a friend remembers to call. I feel very isolated from my very busy friends. I went to a movie with my mom and that was really nice. Haven't been in so long. And I do get a very good feeling when I'm able to clean. It's like a luxury, to have the energy to sort, organize, etc.
I love that you keep some chocolate around. It can be very healthy if it's dark chocolate with 70 -80% cocao! And life is crazy too, don't you find? IE: I'm buying a used car because I can no longer drive my car. It sits too low to the ground and it has a manual transmission. I think as of Monday I will own a small SUV so I can drive further and avoid the excruciating pain I experience in my car. So now that will take most of my time for this week. I have many other physical problems, my back is horrible, my feet, my skin (psoriasis). I also have several autoimmune disorders as well as metabolic issues. I yearn for one week of calmness and energy. Wouldn't that be nice?

 

[VJ Knutson]

It would be so nice to have a week pain free. My husband commented that he can't remember a day when I felt well.
It's nice that you can drive. I had to give that up a year ago last May and only get out for doctor or therapy appointments at present. Also not able to do much cleaning or sorting - mostly bedridden. Getting dressed and making the bed is about all I manage, and some days, if I pace myself and am feeling particularly well, I might be able to cook something. My dear husband does the rest.
I listen to books on tape (have always been a read-aholic) and try to write a blog. My therapist has been teaching me that if I only have a pocket of energy in a day, I need to choose to spend in it a way that gives me some pleasure. I am fortunate to have grandbabies who bring me much delight when I see them.
It does sound like you have many issues to deal with and I know that day after day it is difficult to maintain a positive attitude, and isn't it amazing that we do! Even on my worst days I think, oh well, tomorrow's another day, and inevitably the bad times pass and we get on.
Take care. Nice that we connect on this forum.
V.J.

 

[Martinigal]

V.J.
Yes, it is so nice to connect to others who understand. Do you have ME or Fibromyalgia? I ask because I used to get out only once in a while. Like you, for doc appts and grocery shopping some times. I'm alone which makes it more difficult, or used to make it more difficult. I found a medication that works really well for me.
Have you read How To Be Sick? That book helped me SO much. I feel it saved my life at one point. The book focuses on acceptance. The author has quite a story, I recommend it highly. Prior to being sick you would never see me without a book. Now I find it takes too much concentration for me :-(. I try to do crossword puzzles, very easy ones, LOL!
I'm happy that you have such a great husband. And the joy from your grand babies!

 

[VJ Knutson]

I will look that book up, thanks! I am reading "When the Body Says No" by Gabor Mate - his message is similar - acceptance, how to let go of anger, etc. I have Fibro and ME.

 

[Martinigal]

I will look that book up, thanks! I am reading "When the Body Says No" by Gabor Mate - his message is similar - acceptance, how to let go of anger, etc. I have Fibro and ME.

Oh, both! You got a double whammy. So sorry! My therapist just send me the title of the new book by Toni Bernhart, who wrote How To Be Sick, but it's a long title and I forget it all. You should look up How To Be Sick on facebook. There is a ton of information about her there. I think this new one is her third on the subject and she actually is sick. It's nice to get that perspective, I think.

 

[VJ Knutson]

Thanks, I will!

 

[Cort]

I will look that book up, thanks! I am reading "When the Body Says No" by Gabor Mate - his message is similar - acceptance, how to let go of anger, etc. I have Fibro and ME.

If VJ or anyone is interested in doing a blog on that topic - that would be great. Mady Hornig recently said that emotional stressors and infection activate the same pathways....

 

[VJ Knutson]

I explore the emotional, psychological, and spiritual side of living with chronic illness in my blog through poetry.

 

[Cort]

I explore the emotional, psychological, and spiritual side of living with chronic illness in my blog through poetry.

Can you provide a link?

 

[VJ Knutson]

One Woman's Quest https://vjearle.wordpress.com/

 

[sharon van isle]

A cracked antique, yes, I relate to that. I can't keep enough blood in my head to stand in line at the grocery store. I become woozy and have to bend at the waist to let the blood flow back into my brain. I usually pretend I'm fiddling with my shoe, so people won't wonder what I'm doing. At home if I'm out of bed long, even sitting up, my mid-back aches deeply enough to send me back to bed.

My memory is on par with my 88-year-old mother's, and she is 25 years my senior. I speak in 5-word staccato because I'm trying to get my thought out before I forget what I'm saying. And five words is about all my brain can spit out at any given time. Usually I can't retrieve that sixth word, so there's a long pause while my mind spins in a seeming void. If I'm lucky, I find the word or I'm able to describe it in such a way that my listener can guess what I'm trying to say.

From time to time it seems that all of my mucous membranes ulcerate--from my mouth to the other end of me. This is a searing, broadcasting pain. Focus on much else during those times is practically impossible.

This is just the tip of the iceberg, but... I'm getting tired now.

You have described my symptoms exactly. Check out postural orthostatic tachycardia syndrome. POTS