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I have extremely painful spasms in my ribs and chest. When they happen I scream like I am being tortured. It feels like torture. Do others with slow motility on miralax or not have these "screamers" When I have them in front of docs they say they have never seen anything like it. I also am afraid of ending up worsening to anothher level. This is a scary disease and they dont worn you at the GI docs office.
Help just help
jeni-screamer
MiraLax Back pain Relpax Bruises Chronic fatigue syndrome Gastroparesis Baclofen Vicodin Tramadol Topamax Fibromyalgia Hysterectomy Advil Fentanyl Gallstones Stroke Lyme disease Fever Anemia Constipation Pain Memory Heart attack Heartburn Valium Depression Diarrhea Percocet
How awful! I can't imagine the pain you are suffering. I do have pain myself but mine is not all the time and I don't think it gets near as severe as yours.
Have you been seen by a GI doctor in a big medical facility somewhere? If not, I wish you would consider it. No one should be having to experience so much pain!
I really wish I could suggest something to help. I'm not medically educated but I can't help but think that something more is involved, and surely there has to be something that can help.
I hope something helps you soon. Please keep writing and let us provide you with the support of our friendship.
Judy
Hi Jeni-
I have screamers all the time, they can be devastating. Torture is a very apt description of what we screamers experience.
Most pain meds don't offer me much relief or for very long. My former primary care physician put me on Oxy, Fentanyl patches, Demerol, Vicodin, none of these did anything. The only things that work for me are Percocet and Dilaudid, but only for maybe an hour. No one wants me taking these meds (including my new primary) and it has been a struggle getting any good pain management.
My GI MD doesn't want me taking any opioids as they all slow down the gut. And my pain management MD has told me he doesn't have any solutions because he doesn't understand the pain of GP and motility disorders which has left me with little or no pain treatment to speak of (utterly useless Darvon).
I live (if you want to call laying in bed balled up in pain "living") in a smaller community, Tallahassee, FL, so there aren't many options for good pain management specialists here.
Have you had your gallbladder removed? Mine was found to be full of sludge and three large stones and removed in February, 2005. That's when all my troubles began. I haven't been the same since and it seems the pain, nausea and abdominal discomfort gets worse and worse as time passes.
You might want to see if your doctors will check you for biliary/sphincter of oddi disfunction and pancreatitis.
Yahoo groups has a terrific forum for SOD sufferers:
http://health.groups.yahoo.com/group/Sphincterofoddi_pancreatitis/
You might want to take a look.
Last March, I had an ERCP with secretin followed by a sphincterotomy performed by the wonderful, and very expert, Dr. Martin Freeman in Minneapolis. He didn't think the procedure would solve all my GP/GI problems and there was only a 50-50 chance the procedure would resolve my SOD problems too.
Dr. Freeman found the pressure in my billiary ducts to be quite high and removed the tiny sphincter of oddi. The procedure opened the flow of bile and immediately took away my upper right quadrant pain (and as predicted, didn't make a difference to my other GP/GI problems). But I'm sad to report, the URQ pain has returned with a vengence over the last three weeks.
My great local GI has just ordered more scans and blood work done to see if there is some sort of structural problem or if my pancreas is acting up (common with SOD patients). So we wait.
Also, I had been taking Miralax everyday for many months. But I've recently found something that keeps me going regularly and works far better for me, Digest Gold (a pancreatic enzyme). It can be found at any health food/vitamin store and is a bit pricey ($65US per 100 capsules). I take it four times a day just before eating.
Digest Gold is no misnomer. It works wonderfully for me, for two months now, I've had regular (once daily) well-formed BMs -- way better than Miralax.
My BMs don't relieve any discomfort of course, but it's nice not to be vacillating between constipation and diarrhea anymore, plus Digest Gold can help with possible pancreatitis.
I hope some of this info is useful, Jeni. You're not alone, please let us know how things go for you.
I just saw a doc who thinks I have lymes disease and rib pain is often a symptom. You are the first one to sound lke me. I get through the day mostly horizontal. I luckily don't have a job to goto. I would be fired anyway. I had a good day on friday and since then I can barely walk. I just noticed bruises down my leg on the inside. I fell not long ago. The valium at 40mg a day was not working now they added baclofen too. I have taken it before by itself. I was very out of it. I don't remember much after i took that. thank you for writing. I am so confused. Should I go to the ER I never knwo. If I scream continuously and I cant stand it I go. Gotta go
Jeni
hi. Thank you for your kind words. I don't know how to endure this. I just keep searching for answers. I have a bunch of tests out and more to give blood for here. I went to Maryland to an alternative physician. He specializes in treating lyme disease. He says my presentation says lymes the tests we will see. He thinks its the disease that explains the symptoms of fibromyalgia and chronic fatigue syndrome.
jeni
the infectious disease doctor says not lyme disease. The gastro doc says get back on miralax and keep taking it that is so important. He wants me to use golitely and clean out first. I am reducing my pain meds and doing well with that but my spasms are coming back. Meanwhile I have recorded twenty episodes of "what not to wear" It is my guilty pleasure to watch people get to shop and be madeovere to look great. I occasionally get inspired enough to care what I look like for a minute. It is hard to wear make up when you cry a lot and clothing is a nightmare. it has to be loose comfortable and easy. I cant wear heels. I love my uggs and I know they would throw them away but it is all I wear in the winter. My feet are always cold and hurt if I wear anything slightly uncomfortable. So I watch these other lucky people plus I love new york and thats where they shoot. My daughter lives there and we always go to Filenes Basement and Hn M when I go see her.
jeni
Hi Screamer,
I get some kind of spasms on my left upper side - kind of towards the back. Like you, I yell (not scream). It depends on how I shift my body around as to how bad it can get. When I'm on the "potty" I can't move or I'll scream. I have not idea what this. I'm thinking it's just my body tensing up from all the pain that makes muscles spasm. What's up with this? It's awful. I hope you do better - that's just horrible! Thinking and praying for you!
jpoucher
Hi. Thanks. I am doing better. i have cut back on my pain medicine and I am using a light sound modulation therapy that is really helping me to relax and not scream as loud or as often. I highly reccomend the therapy and it is not that expensive.
jeni
I have spasms too; but, then, I have a lot going on. I broke three ribs 25 years ago and that spot in particular squeezes.
Then the meds I take for stomach movement makes my lower back spasm and I scream out loud. It just happens cuz the squeezing is so bad. I hate when it happens when I'm out. I still scream cuz it take me down.
I broke a rib too. I did not know it when it happened it just hurt to breathe. I foundout it had fractured. It is in that area that I get some of the spasms. I m like you I cant hold them back. Out they come. funny it doenst happen at the doctors office! Just all day at home. Especially after eating. I have had a few weeks with a couple of spasms but the screamers returned a couple days ago and today they are bad. What do you take for them? I found that Valium is valuable as heck and at first baclophen helped. I switch back and forth so I dont get addicted to valium. My doc hates me taking valium. It works the best unfortunately. I think if she saw me have a screamer it might be different. The one doctor who did was a neurologist and he suggested stiff person syndrome. I have the spasms in my diaphram and lately tics in my legs and eyelids. I have fibromyalgia too. What are your issues?
jeni
Hi Jeni
I have to say, chest spasms are bad. You might also check to see if you might have pleurisy. It's inflammation of the lining of the chest wall and for me always stays in one spot... With the broken ribs. It's a difficult diagnosis to make. It's more by elimination... it's not this... it's not that... Yadi-yada. And I'm always happy when they happen on the right side so I know it's nothing with my heart... I have a lot of things wrong... Grrr... And I don't like it.
I take 28 pills a day, five times a day. My thyroid does not convert from T4 to T3 so I take cytomel four times a day. Now with GP everything is screwed up again.
I've screamed out in a movie theater before with chest spasms... Embarrassing... But what's a girl to do. Health issues seem unending for me and I don't like that either :):):)
And I took two vicodin today because the low system here is low.
Brooklyn
HI. Thanks for the reply. I broke my foot yesterday and I am so depressed. I had screamers today too. It is embarrassing when it happens in public. So the weather has an affect on you also. I definetly have reactions to the highs and the lows.
J
Two months and my foot is not functional enough to walk on yet. GEESA how long does it usually take for a bone to heal? Doc thinks a few more weeks and I can put pressure on my heal. We shall hope. Meanwhile I just wheel around the house as best I can. Any advice on broken bones is helpful now.
Jeni
Jeni,
I can't offer advice on broken bones but I do hope you are able to start walking on your foot soon. You certainly have to deal with too much already to have that problem too. Do you think it's taking you longer to heal because your nutrtion level might be low?
I'll keep you in my thoughts and pray that you will see a big change soon.
Judy
Jeni,
Have your doctors checked your gall bladder? I have been having horrible spasms in my upper middle abdomen, my upper right abdomen and it radiates to my back (under the right shoulder blade). Sometimes they are worse than labor contractions. I am having my gall bladder ultrasound soon. A friend of mine was having the same exact symptoms and she found out that she had numerous gallstones. They say that if it especially happens right after you eat, then it very well could be gallstones. Let us know what you find out and good luck, sweetie. My thoughts are with you.
One of the first things they did an ultrasound of all my organs and no stones. Now I am also anemic. Is that something that goes with gastroenteritis? I dont have a uterus so no periods to blame now. What could cause that?
Hi, it is really important that you find out why you are anemic.. I actually have stage III kidney failure and my body d/n produce any of its own red blood cells anymore, but I had a doctor for two years that just said some people just are anemic. I told my sister who is a doctor and she went crazy.. she said early in med school they learn that anemia is not a cause but an effect. I'm not trying to scare you, and I'm sure your kidneys are fine (I had undiagnosed high blood pressure for two years - yes same doctor, told me that my blood pressure went up when I went to see her) so that and possibly long-term advil time items led to mine. The first specialist I saw was a gastro doc, and I'm sure he knows if you were bleeding from your endoscope or colonoscopy (those were my tests), then I was sent to a hemotoligist who did blood work, finally I was sent to a kidney specialist. My point is I'm sure it is something simple, but you will feel better when you aren't anemic, and make sure that your PCP follows up on it. I would never want anyone to suffer from what I have. Feel free to contact me if you have any questions... Lori
Thanks Lori. I had a second blood test and they think it was an error. My bloodwork was fine. I used to be anemic a lot of the time and it was blamed on my period. I always thought it was weird that they didn't seem concerned about anemia. I will keep track of it and if it happens again I will have it checked further. I have had endoscopy and colonoscopy that were "normal" then the doctor said I wouldnot let him go all the way around my colon because I was saying get it out. Great. that makes no sense to me. The endoscoopy was worse they held me down and shoved the thing down my throat and I remember it. anyway thanks for your thoughts. I appreciate it.
jeni
FYI My foot is just finally getting better and it is so great. I am walking with crutches more than using the wheel chair and I feel like life is coming back. It has been so horrible I have never had such a long hard recovery as a broken bone. Having babies, hysterectomy all were painful but healed wwayy faster than a stupid foot. i will have much more empathy for those with broken anything! I knew that my rib hurt when it was broken but it was before I had these other pain issues so it pales in comparison.
jeni
I have been diagnosed with sphincter of oddi disorder...never heard of this before. When I get an attack it is as though someone is continually punching me between the shoulder blades, and unless i take tramadol the pain in my upper right quadrant is unbearable. has anyone else got this, I really need to know that I am not the only one...although it feels like it at the moment
Hi Jeni, your symptoms sound like mine were when I was diagnosed with gall stones. Have you put on weight lately that you cant explain, and does the nausea get worse after eating
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