tight band constricting abdomen/torso

i haven't officially been diagnosed yet, but my doctors are leaning towards it. i'm getting an mri thus week and they are going to biopsy my lacrymal glands next week to get the diagnosis. my biggest symptom is a tight band of tension starting where my underwire (on bra) is and goes down to just below my bellybutton. this excruciating constriction gets worse throughout the day as im on my feet. it only feels bearable if iam lying down (this leads to unproductive days...) also i have numbness (altough my doc does not consider it numb because i can feel pin pricks and light brushing)
or a loss of feeling all through this same area. i havent heard or read of anyone having this same symptom w/ sarc. to give a recap of my illness:
starting 1st week in may 08
numbness on rt hip
spreads to whole abdomen.
tightness around waist
weakness in knees/legs (need to hold on to railings)
constipation
floaters in eyes
swollen lacryml glands(tear glands in eyelids)
disturbed gait
minor/sporadic headaches/ nausea
pins&needles in fingertips, hands and toes
glands in jaw hinge swollen
lymph nodes in chest swollen (CT scan)
white spots on retina
has anyone experienced similiar symptoms?
and secondly....is anyone using alternative methods (in addition to medical) to help heal themselves; acupuncture, diet, herbs, homeopathy?????
any comments appreciated!
thanks all!

Report post

16 replies. Join the discussion

Well first I am sorry to hear of that kind of suffering and sorry to have to welcome you to Sarcoidosis.
However there is plenty of excellent info here and as usual bad information. I have found this site to be the most accurate in info so far.

I have been using alternative medicine although I prefer to call it natural medicine.

I wont bore others with all the info I have previously posted but you can do a search at the top right of this page for "magnesium" and then try "oreganol" .

After several years of research and frustration I found the only thing that gave me a positive effect
magnesium.

You can contact me directly if you dont find it or need more info.

Take care!

Report post

Hi Donaflora. Like you I'm a "maybe Sarc"...the numbness thing - I have many areas of numbness and most of the time I also can feel pin pricks and light brushing. But, the fact remains, as the owner of the numb parts, they are useless to me whether I can feel things outwardly on my skin or not. I also have pins and needles in my hands and feet. No idea whether this medically is true or not but I've come to the conclusion that the inside numbness as opposed to skin touch numbness must be controlled by different nerves or some such thing. When my face gets really numb and I can't move it properly, nor even talk because of the numbness, I can still feel (albeit a little muted) the doctor's pins and light brushing. Don't accept the doctor telling you it isn't problematic.
Good luck with journeying towards a diagnosis.

Report post

thanks for responding. i will look further into magnesium. what, if any other natural remedies do you know of? or any books or publications that deal with sarc and diet/ vitamins etc...?

Report post

hi, does the numbness or pins/needles ever go away? and thanks for backing up my mysterious "numbness"

i have so many other questions...

Report post

I get the numbness as well, Lycria seems to help that somewhat. I have IBS (irritable bowel syndrome) so often have pain in my abdomen, hard to tell what pain is from what condition. My tight band feeling is more from my under-wire and up! I have many of the same symptoms as you. Have you considered seeing a neurologist?

I tried acupuncture and I felt that it helped to detoxify my body and was relaxing, it really didn't do too much and it gets real expensive real quick. I still do massage therapy though as I have a lot of swelling and joint pain.

Report post

Except for conditions of the eye, my symptoms are almost identical to yours. My neurosarcoid was verified in 1996 by lymph biopsy and a spinal tap.
Things I know now I wish I had known then:

The tightness I feel thru my torso is is a swollen(fibrosis) liver...causing almost immediate constipation. My high doses of pill form prednisone were accompanied by high doses of Vitamin D to "save" my bone density. Unfortunately, it is becoming generally accepted that Vitamin D doses can make bones worse for some of us (several discussions on this sight) and definitely has caused my liver to be more granulous(fibrosis). This has the same efect as cirrhosis of the liver...constipation,more inflammation...they don't really know what size your liver was to begin with so scans never remark about size. Once swollen, it's irreversibly swollen only to be made worse by inappropriate diet selection(high Vit D) and well meaning doctors who write prescriptions without this knowledge. Hormone replacement drugs and bone crap like Fosomax have the exact same effects.

Medically I'm sure there is someone with a fancy explanation. But if you are to find any relief....avoid vitamin D supplements...get D from food alone and avoid excessive sun.

If prescribed steroids get your doctors to prescribe the liquid formula(prednisolone). Your system doesn't require as high a dose as the pill form(I don't know why, but the last three years I no longer take any steroids on a regular basis... only when I feel horrible ...it somehow brings equilibrium (relieving joint pain...tight chest).

So far nothing helps the PROFOUND numbness and tingling in feet and fingers. I purchased magnesium oil recently based on some reading on this site. I'll let you know if it relieves anything...hoping to lessen body cramps.

Report post

I know what you mean, I don't have a appendix but there is pain in the area where it used to be. My belly button even hurts. Isn't that weird? But a trip to a Gyn. says I'm okay, must be the liver then , and I also feel at times a tight band around me. I know my body is contorted by my Scoliosis so the pain shifts around but it is still always there, have not been pain free since Sept of 2006. I get cramps in my toes, legs,back & esp.jaw too. I have a lot of stress, but who doesn't? I slept til 10 this a.m., woke up, ate, took meds and went back to sleep -ahhhhh -nobody to wake up!!! Lyrica is helping with the numbness for me, am on it for pain too.

Report post

Hi Donaflora.

For me, when it first started, the numbness and pins and needles used to go away and then come back. The last couple of years, though, it has stayed permanently with me, accompanied by muscle weakness in my arms/hands.

I saw a neurologist for the first time last year and that nearly scared me off neurologists for life. Saw a neuro-immunologist for the first time a couple of days ago and that appointment went well. He seemed to understand perfectly what I meant by feeling numb, with pins and needles, but still being able to feel pin-pricks and brushing. This neurologist was so very different (in a good way) from the first one. The first one was dismissive of everything. This new one was dismissive of nothing and was very interested in the whole big picture.

Report post

I've been searching the internet for a long time looking for someone with my symptom. I have numbness (like I have been shot with novacaine) that goes from just below my chest to my navel. I do have a sense of touch on the skin and can feel a needle. The numbness feels like it is deeper down ....just below the skin. This feeling goes all around my torso and I feel like I have one of those wraps that people with broken ribs wear around them...very tight...brutal really....especially in the abdomen area. I've had a spine and brain MRI that showed no lesions. My pcp said I do not have MS. This first started 1-1/2 months ago. First just below the chest...then 2 weeks later all the way down to the navel. I did have some sort of arthritis attack 3 months ago (ced rate was 110) but my doctor says there is no relation to the numbness. I am still waiting to see a neurologist. This is incredibly frustrating. I'm wondering if this feeling will ever go away. I just want to lie down. I'm glad I found someone who feels like I do. I thought I was the only one in the world.
Good Luck

Report post

hi, i too have suffered from pins and needles and numbness, i tried magnesium tablets and also eating wheatbran, it does help, but the symtoms can come back, i also eat raw garlic, i know its horrible but it can help with circulation and helps keep your heart healthy, if you cant eat garlic try tablets or capsules?
good luck and hope you start to feel 100%
David

Report post

The constant pain/numbness around my waist and stomach that I have had for 4 months has turned out to be Sarcoidosis. Good luck to you all.

Report post

I have some of the symptoms on your list. What a nasty, cleaver, cruel, sneaky illness sarcoidosis is!!!
I have to wonder if the word "numbness" is putting your doctors off? I have the same sensation, so I know what you mean, the tingling, crawling feeling and also what you call "numbness". I think to be thorough, doctors always have to rule out other illnesses when we get these symptoms and that is what they do. Sarc mimics so many horrible illnesses.
Several years ago, before my dx I developed this "rope-like" structure, running from below my navel diagonally upwards through my breast, completely tethering it and into my chest wall. It was pulling my torso from both ends, like a rope. Several doctors were at a loss and I was sent to a specialist that deals with the lymphatic system. While they were still talking biopsy, it slowly started to disappear. After several months there was no evidence of it. My sarc doc now says it was sarc related.

Report post

I have neurosarc with many of these symptoms. My disease started with a lesion on my cervical spinal cord (just below the neck) which caused permanent damage to the cord. Without pain meds I get unbearable nerve pain in my hands, feet, and yes - torso. The nerve pain is similar to what you describe but varies to higher levels of agony: numbness, burning/tingling, constriction, etc. I use a combination of Neurontin and Lyrica to control this pain. (These are similar drugs.)
I would think anyone with neurosarc symptoms should get an MRI of the spinal cord, and get treated as appropriate.

Report post

Just reread the original post.
Good luck with your MRI.
(If you've never had one, don't be too worried about it, I've had many now and usually wind up napping before it's over. If they offer you a sedative, all the better.)

Report post

I started out with what I though was the flu. I had a fever for 5 days then when my fever broke I developed a numbness in my pelvic area and then it moved into my stomach and back area. I now feel as if I have a very wide belt wrapped around my mid section and it gets thighter and thighter. I am having to take laxetives in order to go. I just spent 2 days in the hospital having 3 MRI's done, belly scan and spinal tap. Everything was negative. When explain my sympotms to the doctors, I said I was numb in the pelvic and waist area, tingling in my left hand and left foot and constipated. They would not pay attention to the fact I was tight and constipated and all they wanted to do was a bunch of neurological test. I just left the hospital with no explanition and then I found this site. Although some of my symptoms sound like Sarc, I reserched and found many other symptoms that I don't have. Anyone else experiencing the same thing as I am?

Report post

My Friend,
My Rheumatologist insisted that all my pains and numbness etc was arthritis. It was only until I went to an opthamologist for my floaters and it showed inflammation in BOTH eyes which is a sign of an underlying condition.She said that I had sarc. She had me have a chest X-ray. It was the second concrete sign that I had sarc. PLease insist on having a chest x-ray and have an eye exam as sarc shows up as inflammation in the iris sometimes.
good luck

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders