CFS or fibromyalgia-terrible air hunger and rib pain

sarahloudobby

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Jul 22, 2022
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Hello everyone
I was diagnosed as having CFS back in 2002 but recently it has been more like fibromyalgia symptoms of tender points etc. I’m new here so sorry to go straight in with a rambling post. I’m experiencing awful shoulder/neck/upper back pain and pain all around my ribs even though it often states that costroconditis is specific areas at the front round the sternum. I also have terrible air hunger on most days. Thank you for reading. Can anyone offer advice or have the same issues?
 

JayCS

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Hello everyone
I was diagnosed as having CFS back in 2002 but recently it has been more like fibromyalgia symptoms of tender points etc. I’m new here so sorry to go straight in with a rambling post. I’m experiencing awful shoulder/neck/upper back pain and pain all around my ribs even though it often states that costroconditis is specific areas at the front round the sternum. I also have terrible air hunger on most days. Thank you for reading. Can anyone offer advice or have the same issues?
Hi Sarah, and welcome in, after such a long history of symptoms!
No worry about cutting to the chase, that's not rambling at all...
"Tender points" reminds us of the out-of-date tender point "test", but if you mean it just in the sense that we have alternating tender pain points all over, then that's like you say possibly more FM than CFS.
You mention 2 symptom areas, local torso pains and air hunger. Many of us have that.
Costochondritis involves a pain coming from the muscles between the ribs, which go pretty much all round and these can also influence further muscles. So I don't see anything that contradicts your idea. Also it's logical that the muscle pain causes shortage of breath. I had an experience in my teens where rib and back muscle pain made me lie down and that made me stop breathing completely, because my whole rib cage cramped up, my first of 3 seemingly death-near experiences in my life. (I was told if I'd've then fainted the muscles would have relaxed... but I'm glad I didn't find out.)

My main idea, because it helped me, is basically good rib & back muscle strengthening exercises. I'd first get an orthopedist to see if there are any bone specifics that need to be sorted out. And it took 5 physiotherapists at that time till I found one who could show me exercises which included tensing of many muscles incl. glute (gluteal muscles). But that's changed a few decades later - every aerobic etc. teacher should now know that.
I still need to do these exercises 10' every day without fail.
If you to try a quick solution, put 'costochondritis exercises' in youtube and just start. Gently first of course, because at the moment they're in a state of turmoil and might overreact. But good exercise videos will explain that and how to increase....
For immediate relief you will also find acupressure videos on youtube for costochondritis.

There are other forms of breath shortage which I feel have to do with other fibromyalgia muscle problems, and I've had times of, but regular, gentle, short exercises and stretches (e.g. 5 x 3 minutes per day, and each exercise only 10-30 seconds) can also help with that, I've found.
Like @sunkacola's written down in her post for people new to this - recommended reading - we above all definitely need to learn to keep to our sweet spots.

Hope you get relief quickly. If this is your main pain issue then I can imagine it being resolved fairly quickly (weeks or months) and you then just being 'content' with the CFS diagnosis :cool:
 

Julie312813

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Nov 27, 2021
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Before I was diagnosed with FMS I had symptoms very similar to those you are describing. I was diagnosed with costochondritis and still have pain in that area but at least now I know it is not a heart attack :) . I agree with stretching as being one of the most effective therapies I have tried. I have tried all kinds of yoga and perhaps it was, what to me, the rapid succession of moving from pose to pose but it didn't seem to help. I got a good stretching book and spend about 20-30 minutes a day stretching. It has helped me enormously. I wish you well and hope the pain eases.
 

JayCS

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now I know it is not a heart attack
Hehe, anyone else been to A&E/ER cos of it?
Ironically, checking blood pressure, increased due to the pain, lead on to my cardios finding genetically high lipids and blood vessel problems, reminding me that quite a few men in my family have had or died from heart attacks. So aren't I lucky that fibro paved that way and maybe saved my life, cos I now countersteer and keep it checked. 😜
 

sweetkamie20

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May 16, 2022
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Hehe, anyone else been to A&E/ER cos of it?
Ironically, checking blood pressure, increased due to the pain, lead on to my cardios finding genetically high lipids and blood vessel problems, reminding me that quite a few men in my family have had or died from heart attacks. So aren't I lucky that fibro paved that way and maybe saved my life, cos I now countersteer and keep it checked. 😜
Theres a silver lining ❤️❤️❤️❤️
 

LightOwl

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Oct 5, 2022
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Hello all, my Fibro nightmare began a week after a near death experience being towed on a mountain track near my home in a car which hit a soft edge and went over, rolling once, then being pulled up short on the tow strap. I was thrown into the back of the car but managed to scramble out and climb to safety. We had to cut the car loose as it threatened to pull the towing vehicle over. It fell 300metres into an arroyo, landed on a huge round boulder on its roof and bounced off upright in the dry riverbed... It has washed downstream by 100 metres when the river comes back every year. I was in shock for a couple days and suffered bruising to ribs front right. One week later I began getting pain in my back, shoulders and neck. But it wasn't like any pain I'd had before, a burning, visceral pain which took my breath away..quite literally. To accompany the pain, there is often numbness on areas of my back, with a feeling like water is being trickled down it. That was 10 years ago and I have had flare-ups ever since. Never been diagnosed. I also get chronic fatigue, anxiety, depression and periods of air-hunger... which is aweful even without the pain. Two years ago I started immersing myself in a barrel of very cold water ...better in winter months...no so in summer, here in the mountains of Andalucia, Spain.... I get relief from the pain for a couple of hours doing this...it is FANTASTIC when you get used to it,!!... helps the depression too ... Got my inspiration from Wim Hoff.
Have read a lot, trying to get to the bottom of why I continue to experience so much pain. One book I can recommend is 'The Divided Mind' The Epidemic of Mindbody Disorders. by John E. Sarno MD. I am re-reading it now. A fascinating read. Wishing everyone a Pain Free Life.❤️✨
 

JayCS

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Hi LightOwl, and welcome to the forum!
Got my inspiration from Wim Hoff.
Ah, another one, not many of us around, but me too. I did whole body cryotherapy for 1.5y and a friend recommended Wim Hof to me and since then I cold shower almost every day, and variously experiment what it helps me with, e.g. sleep. I also use his breath-holding technique, far more helpful to me than any other breath exercise I've tried, altho I do use quite a few others.
Mindbody Disorders. by John E. Sarno
Yeah, he seems to be interesting if things like trauma seem to have caused and explain most of the pain, like in your case. Have you read Jon Kabat-Zinn or Peter Levine too then?
 

LightOwl

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Oct 5, 2022
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Read some Jon Kabat-Zinn some years ago...thank you, I will search my ebooks...and I think I had an audio book too. Peter Levine no, but added to my reading list. Mines clearly stress related, I started a flare last Saturday night after we took our suddenly poorly cat Bodhi to the vet who, after tests, determined that his urether was blocked and his kidneys were compromised, judging from the crazy test results they were getting. We left him there until Monday, all the while in turmoils of emotion, after the vet hadn't given Bodhi much chance of survival. Super gladly, Bodhi pulled through and is home with us now with a new note to his purr:) He is a True Bodhicattva:))
 

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