severe chest pain ,breathing problems

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severe chest pain ,breathing problems

Postby taichi » Mon Apr 08, 2013 9:19 am

We assume my breathing problems are from the muscles in my chest. I would like to know if anyone with this condition has severe tightness in their chest. I have had 3 severe episodes. I know it sounds like it could be the heart. I just hesitate to go to the doctor every time we have something odd. I have had a complete heart work up several years ago and was ok.
today my chest is sore from the tightness and poor breathing. I am so tired of trying to decide what is causing each different problem. My NL said it is the disease/ My plu has no clue. I only have 68 % lung function as it is. Part of it is scoliosis. thank you for any info
barbara
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Re: severe chest pain ,breathing problems

Postby pmaxwell » Mon Apr 08, 2013 10:53 am

Many people have told me they feel a tight sensation around their chest or ribs like a band being tightened. The symptom is related to a syrinx. However it is never wise to just assume a symptom is the result of Chiari or syringomyelia. Whenever you have a new symptoms it is important to check for other causes and to get it in your medical record as well.

I know it is pain and expensive having to run to the doctor all the time, but you don't want to ignore warning signs either.

Patricia
Together We Can...
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Re: severe chest pain ,breathing problems

Postby JuneBug » Wed Jul 10, 2013 6:40 am

I have a SM but I also have bad chest pain, like a wide rubber band from front to back of spine. Heart is good. Certain movements twisting, bending, lifting, etc make the pain worse. Recently my PM dr gave me a nerve block in the intercostal nerves, this seemed to help. Now I believe there is an issue with the intercostal nerves. Could your intercostal nerves be a problem?
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Re: severe chest pain ,breathing problems

Postby taichi » Mon Jul 15, 2013 7:07 am

Thank you and I will look into this. I am I know I am depressed worse. anything I do It just fatigues me and I have to sleep for sometime. I seem to find it harder to cope with everything. I am losing use of my left arm, but that comes from the problems in my neck.
constipation is getting more of a challenge. I went to my Gastro and he gave me a new pill but it is no help.I know I am depressed but I do not want to take another pill.
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Re: severe chest pain ,breathing problems

Postby drummergrl » Mon Jul 15, 2013 11:53 am

Not sure if this will be the case for you, or helpful at all, but this was my experience. A few years ago I experienced shortness of breath and major tightness like you described, and ended up in the E.D. After getting a CT of my lungs (they initially were looking for pulmonary embolism) the doctors told me that I have hyper-elongated lungs from my scoliosis and that when they get irritated, the odd shape of my lungs can cause these symptoms.

Obviously this might not apply for you, but since you mentioned scoliosis I thought I'd let you know!
CM, SM, Scoliosis
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Re: severe chest pain ,breathing problems

Postby taichi » Mon Jul 15, 2013 7:48 pm

I do have scoliosis and have had surgery with a Harrington rod.
this has been25 to 30 years ago. I only have 68% of lung capacity.
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Re: severe chest pain ,breathing problems

Postby sylvester » Mon Aug 19, 2013 10:28 am

I've had this severe chest pain/difficulty breathing many times before my TCS surgery in 2010, only a couple of times since. I describe it as a boa constrictor wrapped around my chest, squeezing the life out me and just when I think the d*** reptile can't squeeze any tighter, it does. Mine have lasted usually about 1-3 hours. After multiple trips to the ER and many cardiac workups (all negative) I learned talking to my neuro at TCI that this is something called the "SM hug" which is caused by the syrinyx. Many of us with SM have experienced this. (People with MS also sometimes experience this, called MS hug. Exact cause is different but the effect is the same.) Basically it is caused by improper/misinterpreted signals between the spinal nerves and the intercostal muscles causing severe (no kidding :roll:) muscle spasm.

For me, I've found that morphine/oxycodone/hydrocodone group of drugs, rather than relieving the pain, actually trigger it. It helps a little knowing what it is, and that no permanent damage will result, but that doesn't make it any less painful. That said, however, one should never ignore sudden severe pain, especially chest pain. But if you've had it before and recognize the symptoms, you might decide that a call to your PCP rather than 911 would be more appropriate.

I wouldn't wish the SM hug on my worst enemy.
Anne
" ... always remember: you're braver than you believe, and stronger than you seem, and smarter than you think." said Christopher Robin to Pooh
(SFT 2/10, SM T6-T12 x 4mm, scoliosis, cervical/lumbar DDD, chiari w/low-lying tonsils)
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Re: severe chest pain ,breathing problems

Postby reedy » Thu Aug 22, 2013 4:08 am

sylvester/Anne - thanks for that VERY useful post.
I also love your signature quote!
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Re: severe chest pain ,breathing problems

Postby syrinx48 » Thu Aug 22, 2013 2:02 pm

Hi Sylvestetr/Anne,

Also from me thank you for the useful post. I know these SM hugs very good :(

Annemarie
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Re: severe chest pain ,breathing problems

Postby taichi » Sat Oct 12, 2013 8:01 pm

I have found any activity at all causing my intercostal muscles to knot up and I have difficulty breathing and have to go to bed for several days, I thought once sm attacked a part of your body it would never repair. I have muscle weakness all over. Walking is a challenge, opening boxes, jars is impossible. Does this sound like I could be losing most of my muscles and will not be able to function. Also many knots in my neck and shoulders. I think this from straining to hold my head up. I am so happy this topic came up again.
thank you for any info.
barbara
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Re: severe chest pain ,breathing problems

Postby syrinx48 » Sun Oct 13, 2013 6:07 am

Hi Barbara,
I don't know if you have physical therapy, but you can ask to get massages from a physical therapist. When I was in Germany for Rehabilitation I got them too, and I must say that it helped me, together with muscle relaxation as Sirdalud (tizanide) and rivotril.

Annemarie
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