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Living with Polyneuropathy CIDP, GBS, & CMT

Tight band around ribcage

Hi,

I have been diagnosed with CIDP since October, 2013. When I was first diagnosed, the "binder" feeling around my abdomen was one of my biggest complaints. It worsened whenever I was driving in the car and had a seat belt on. It isn't so much painful as it is disturbing because it does make taking a deep breath difficult. I found that rubbing out the abdominal muscle helped a lot. The feeling comes and goes and I can't say if anything except maybe stress makes it worse. I have had GI tests including a CT scan of my abdomen done because I was certain there was something in the abdomen tightening it up, but all the tests came out negative. My GI doc thinks it's the nerve issue stimulating the abdominal muscles to contract and stiffen up. I have had IVIG treatments two days/week first every 4 weeks then every 3 weeks and the feeling still persisted. I don't think the IVIG helped it at all, although I don't feel it all the time. Again, if it really bothers you, try changing positions, move about, sit straight up, and massage out the abdomen. I have read about this issue happening in people with multiple sclerosis and maybe the mechanism is similar. Just make sure you tell your doctor about it.

Hi there,

I have not had this symptom but I think it may by the same as the one MS patients call the MS Hug.

“Banding, otherwise known as the MS Hug, is described as a feeling of tightness, being constricted, or squeezed around the chest. This is where the intercostal muscles (thin sheets of muscle between each rib in the chest cavity) go into spasm. This can be incredibly uncomfortable and painful. Usually this is treated with one of the standard drug therapies such as carbamazepine, gabapentin or amitriptyline. If these are unsuccessful a referral to a Pain Clinic may be needed.”

You can find more info here: http://www.ms-uk.org/choicespain

Joy

1 Like

Hi. I was diagnosed with MS in 2010 and CIDP a few months ago. The banding pain that you are describing is what we MSers call the MS hug. It's rather uncomfortable and I usually take Valium when mine kicks in which helps tremendously. I am not sure if it's a symptoms of CIDP or not, but if it lasts too much longer, you might want to consider a MRI of the brain. Take care! :-)

I have this my ribs and back feel as if they are being crushed. I get infusions every week. They don’t help this . I have to push my meds up pretty high before getting any relief.

I am having the exact same issue right now. I see my neurologist Fri.for advice. However the symptoms of my CIDP have gradually moved from my toes, to my entire foot,calves,shins,lower thighs… Now compromising my upper thighs & butt area. And always whatever area was next to go numb tingled and became tight…and that is what my stomach and rib cage are doing. Feeling very tight. Very scary to me. I really think that I have CIDP some other disorder.

Yes!! Finally I am reading about what I have experienced since Easter Sunday, 2013. At first it was so bad, I thought I was having a gallbladder attack again! I went to my PA and he performed all the tests for my heart. I kept telling him it wasn't my heart. I even went to the ER to get some relief. Again all the tests for the heart were performed. Everything normal again. But the squeezing pain continued. My neuro said it was my hiatal hernia. The surgeon said it was neurological. I got the run around for months, but no relief from the pain and pressure. I had trouble taking a deep breath, I felt "winded" all the time. The band went around my back too. I was on hydrocodone for the pain. It didn't help. This summer is the first relief I've had since it started over a year ago. I was put on Lyrica and amatriptlyne (spelling). The pain and pressure are still there, but it has "let up". If I over do it or get really stressed, I hurt so much. I was receiving IVIG once a week for about 4 months. At first it helped, then all I was doing was sleeping. My neuro stopped it. And basically wrote me off. I am going to a pain clinic now. Have to see the counselor every two weeks, then finally see the dr in Sept. I've been told all of this (CIDP) has been caused by my depression and anxiety. No, the CIDP, the constant pain and not knowing what is happening to me has caused the depression and anxiety. I currently do not have a neuro. I don't know where to begin looking for a new dr.

I thought the tightness in my back rib cage was an isolated problem, interesting hearing so many others with CIDP experience the same complication. I have found when I get stressed the symptoms increase. Yoga and stretching helps along with breathing exercises, concentrating on supplying the area with oxygen. I too am frustrated with my neurologist. I have been on ivig for over 3 years, my disease is progressing and her only suggestion has been to decrease my pain meds. She said all doctors will be eliminating writing prescriptions for narcotics and patients will need to go to a pain clinic. She referred me to one and all he said was "I don't know why you are here" (the oncologist she referred me to said the same thing) She has told me not to tell them I have CIDP because they won't know what it is. I have tried getting into the University of WA Medical Center but it takes them over a month to say if they will accept me, then a 5-6 month wait for an appointment. Good luck I hope the responses from everyone here brings you comfort. Peace Nancy

Two main nerve activate the diaphragm (2 phrenic nerves, left & right). The diaphragm is a muscle at the bottom of the lungs connected to the ribs and other locations that controls air inhalation/exhalation, both voluntary and involuntary. Signal comes from multiple cervical lower neuron nerve roots.

Also look up intercostal muscles of the rib cage. Try Grey's Anatomy to locate exact place of dysfunction.

Many diseases cause lung/chest dysfunction. See a pulmanologist.



Joy said:

Hi there,

I have not had this symptom but I think it may by the same as the one MS patients call the MS Hug.

"Banding, otherwise known as the MS Hug, is described as a feeling of tightness, being constricted, or squeezed around the chest. This is where the intercostal muscles (thin sheets of muscle between each rib in the chest cavity) go into spasm. This can be incredibly uncomfortable and painful. Usually this is treated with one of the standard drug therapies such as carbamazepine, gabapentin or amitriptyline. If these are unsuccessful a referral to a Pain Clinic may be needed."

You can find more info here: http://www.ms-uk.org/choicespain

Joy

I have been experiencing the same thing for several months now. It feels like I have an Ace bandage wrapped around my mid-section. My back is also very stiff. I have experienced no pain, just discomfort. Makes it tough to put on socks and/or shoes at times. Stress or excitement makes it worse. If I try to jump or run or swim, my mid-section tightens up like a drumb, feels real heavy,thick. My belly is also distended, looks like I swallowrd a basketball. I was diagnosed with GBS and they CIDP. Everything began a little over a year ago. It has been a tough mental road. I take an anti-anxiety script to contol it. Stay positive.

I had this! It is not always pain, sometimes just pressure, but for me I found I could not tolerate waistbands or bras with wires. These things felt like barbed wire. When I began taking Cymbalta, and then IVIG, this got better.

I had this for a few weeks, while the paralysis was ascending. When the paralysis reached the bottom of the ribcage, that's when the band became present.

To prevent any confusion, my feet and legs were affected within 2 days, and 2 days after that, my arms became weak. Things then progressed more slowly, but surely. At my worst, I couldn't feel or move anything below my neck, and the paralysis began creeping up the back of my neck, over the scalp, and down to my face. My eyes were normal, except for short bouts of double vision, and the paralysis seemed to skip my cheeks, but started to affect my lips and mouth, resulting in some slobbering. Not bad, but even a little slobbering is extremely embarrassing and worrying. I also had trouble initiating swallows. After aggressive IVIG treatments plus prednisone, the paralysis retreated in reverse order, although my legs and feet never regained their former strength. I use a cane and walker every time I go out of the house. In the house, I touch tables, chairs, walls, etc. to keep my balance. I sometimes go into something like a martial arts stance for better balance.

Back to the band under the rib cage, no matter how often I reported this during the rounds of the neuros, no one ever commented on it, so I didn't worry about it.

I don’t have the “tight band” symptom in association with whatever is going on neurologically at this time (which I THINK may be CIDP, but have no confirmation yet). I DID have this symptom briefly in March of 2006, in the first couple of weeks after an esophagectomy for esophageal cancer, so the suggestion by somebody above that it involves the phrenic nerves may be on target. It would make sense that my phrenic nerves would have been irritated after such a surgery. I reported it to my surgeon at the time, but he seemed totally mystified by it. I have been mentoring online esophageal cancer groups for the past 8 or 9 years, and nobody else ever mentioned that symptom, so it may have just been an idiosyncratic reaction of my body to the stresses of the surgery. It went away in a week or two, and does not seem to be a part of the symptom profile I have been having for the past few years.

At last someone with a band around their chest!!! Yes that’s me!! The doctors look at me like I’m crazy. I was also was diagnosed with GBS and then changed to CIDP. I’m 4 years in and I still have the band, but it gets better. It only is incapacitating when I’m stressed or upset about something. It also tightens when I’m tired. I describe it as like a belt around my chest and it tightens and tightens. U still have it all the time?
Mine is controlled with Gabapentin. I take1200 milligrams three times a day.

I guess that is how I describe it to my Dr. I have been telling them for yrs. Now about the pain in rib cage on my sides, that wraps around my rib cage just under my shoulder blides. It started a few months before I had g.b.s. I complained then and got no answers just muscle relaxers. Helped a little now can’t wait to show this to my Dr she will love reading it . I no longer fell alone with this crazy Nero stuff. You all have a good day or night stay positive. Hugs

Hi …yes…have had same band…but no luck from anyone as to the origin …

The first time I had this symptom I was having an IVIG treatment and was sent to emergency for all the chest pain tests, which came back normal. I was feeling strong pressure in my chest, neck and face. This recurred but I didn’t worry since the heart tests were ok. Lately (3 months later) it has become worse, with many episodes of chest tightness throughout the day making it very uncomfortable. I have also had the feeling of a band around my neck choking me . The neurologist sent me for more cardiology testing -all normal- and a spinal MRI . I am waiting for the results to see if there is any demyelination . I suspected it was a CIDP symptom and it seems to be confirmed by all your experiences of it above. At first I thought it was a side effect of the IVIG. I am taking Pristiq, Lyrica, Plaquenil and prednisolone and have IVIG 4-weekly.

I had GBS with Miller Fisher Variant. Now diagnosed with CIDP. I have the MS hug frequently usually at night when I am tired. I was taking gabapentin but it caused short term memory problems. I am lucky because I have a great compassionate Neuro who really listens. He feels it is a symptom of CIPD but does order a brain scan annually to watch for MS.

I saw my neurologist three months ago about the same issue, I also had stopped the IVIG a year ago and this came up eight months after but also had tighter calf’s and thighs. I felt like the tin man after a rainy day. He started me on Prednisone 20mg daily for a week the 5mg daily that I’m still on. No pryas long as im on it. Hope that helps.

This is me back the squeeze I now refer to it as , had got so bad ( cramps) I had a flare up of it worsening in Feb. 2019. On the left side first got so tight I ended up at my dr. They only gave me a steroid shot, no help, next morning after being up all night, and in bad pain I went to local e.r. they gave me a shot of pain med and muscle relaxers. Yeah, easied the cramps and pain never looked at my side. One week later found myself performing c.p.r. on a friend that had a wreck and massive heart attack, and bam the pressure and spasm hit me on my right side thank you lord their was a gentleman there that releaved me and continued c.p.r. on our friend I was in severe pain for three weeks this time. Suffered it out never went to e.r. this time. But had my niece rub it for me where we noticed brusing took pictures of the bruising and knots, all my dr. Said was nothing they could do for me. I need to see a neroligest When you don’t have insurance no nero will see me cause it is not about healing people any more it’s about the money. So now I live with this squeeze to my mind section and learn to make due with what I have. Oh and my friend lived, thank god. Good day for now