RE: Pain

[Guest guest]

Tracey:

I've had this happen after taking pain medications, but I didn't put the two

together until later. The first time it happened, I thought I was having a

heart attack. I've never felt such pain in my chest/stomach area. I *did*

call 911 and was transported by ambulance to the hospital. All the tests

came back normal, and I was feeling fine again, if a little weak. The docs

diagnosed somethingorother spasm (a general gastritis(sp?)-type diagnosis),

and told me to go home and take anti-acid.

It happened AGAIN, and THAT's when I put two and two together and realized

that if I take certain pain meds, I was going to be in agony for a while

(this particular med. was liquid codeine). It's been trial and error for me

(some vicodin pills work fine, others cause me to roll around in agony.

Staci

Message: 22

Date: Sun, 24 Nov 2002 18:59:22 -0800

Subject: Re: Re: First Dump!!-gall stone

Hi Everyone........

I had quite the experience today, hope you don't mind me talking about it

and you guys give me your opinion. I have Chronic Back Pain and lately have

had to take Roxicet and Soma together to get rid of the pain. Today i took

my meds about 10:00 A.M. and then about 11:30 A.M. i thought i was going to

die. Then it let up for about 1 hour and then it hit again. I rolled and

rolled around on the coutch and moaned and groaned. At that time the E.R.

sounded pretty good. Finieally about 2:00 P.M. i laid down and fell asleep,

and i feel pretty good now. WHAT HAPPENED? Was it meds or could it of been

something else. It's been 1 year since i've had surgery. I've had this

before but it wasn't this bad. And today the pain radiated around to my

back. Then when the pain subsided i kind of burned on the inside. Anyone

had this happen to them?

Tracey

Northern Minn

[Guest guest]

hello,

i'm 14 months out and had had a upper respiratory infection and cough. It was

at the point that i was splinting my abdomen with a pillow to support it and

decrease pain when i coughed. anyway, it finally came to the point that i was

moaning and groaning and having to keep my legs flexed to help decrease the

pain. went to the doctor who put me in the hospital for three days. i took

vicodam and finally took demerol shots, all of which did not help the pain. my

electrolytes were fine and i cat scan was inconclusive except for showing a

hernia that is not in the place where i have the bulge. three days after

leaving the hospital the pain just disappeared. it comes back every 4-5 days

but not at the same intensity. the pain also went around my abdomen like a

belt. i thought the pain was like a severe intestinal flu but with cramping

only, not the usual vomiting and diarrhea. anyway, our symptoms sounded alike.

hope you are better.

georgene

as way of introductionto the group,

i had my rny 9/26/01. i failed my leak test and had to go back to surgery for

an exploratory. after the first surgery, my doctor told me that my lymph nodes

were enlarged and he thought it looked like a maglinancy. when the frozen

section done in the first surgery reported benign lymph nodes he preceeded with

the rny. several days later, the pathology report came back b-cell maglinant

lymphoma. i have never seen anybody with

with a story such as mine. i have not had any chemotherapy or radiation therapy

because my oncologist cannot find the lymphoma now. I am suppose to be watching

for B symptoms. They are weight loss, duh,

night sweats--- I am in menopause. These two biggies don't count because they

can be explained.

some of the lymph nodes have started to appear in that last ct scan so i may be

looking at some action regarding the lymphoma.

i have lost 120 lbs the past year. i wasn't able to quite do all the right

things because of the cancer diagnosis. i kept thinking about the loss of my

friend food and thinking what was the use. my head is on straighter now and

although i stray for eating good all the time, i do try to walk 2-3 times a week

and we have rejoined the gym.

happy thanksgiving to all,

georgene

340/220/under 200

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[Guest guest]

ne: Being strong and healthy is the best way to help deal with cancer.

So weight loss and exercizing was not a waste. It will definitely help you

through any prescribed treatment. I know you will beat this.

Fay Bayuk

[Guest guest]

Lori,

I'm glad you decided to post. You are not alone, and what you are dealing with is very real. I've had pulmonary and ocular sarcoidosis (uveitis and iritis) since 1990. I'm now at Stage IV pulmonary sarcoidosis, and with treatment with remicade, Plaquenil and Methotrexate, am able to do the basics of daily life. I've learned to listen to my body, and if it's a day when I'm too tired to do anything-- then I pull up on the couch, and rest. Today was one of those days.

The pain and fatigue issues we face are so very real, and we need to respect ourself enough to take care of us. It took me a very long time to learn this-- and generally, I do pretty well.

I know that when I was first diagnosed-- it was such a flurry of energy to fix what was broken. To find out that it wasn't a 10 day virus was hard, to discover that after 2 years, I was still trying to wean off the prednisone, and still not able to breath and hike and bike and exercise- was so very hard. Then my sarcoidosis stabilized-- it wasn't gone, but at least it wasn't getting worse. This is what they called remission.

That lasted for 5 years, and then the sarc monster came back-- again in my lungs and in my eyes. It had added the sarcoid-induced arthritis in my spine and hips and hands and feet. I had lost my short-term memory, and my problem solving and multi-tasking skills, and had to give up a job that paid so very well. Fortunately, I had marked the box for long term disability benefits-- and that saved our home and my health insurance. For this I give thanks.

NS is nasty, but it's do-able. We can keep functioning, at least on some levels. It means we grow and adjust, and adjust again, and again. Not a task for sissy's.

Pain control is a huge issue, and if you can go armed with information, then park yourself in front of the door- and talk to the MD. Don't let them bully you and scoot out the door. They will try. They don't like being told they don't have the answers.

I've used the line, "Dr. I know you have 100 patients with high blood pressure and diabetes. I know that you are excellant in helping those of us with these issues deal with them. I also know I'm probably the only one or two of your patients that you may see that will ever have advanced sarcoidosis. So I truly need you to help me understand what I'm reading. I'm not buying into the 'doomsday' concepts online-- I'm educating myself and I truly need your help. This is what I know about chronic pain and sarcoidosis."

Then tell him what you know.

If Vicodin or Lodine work for you for pain control great-- it's a good place to start. If they don't speak up. There is Fentanyl (Duregesic patches) and Methadone (some swear by it) and Oramorph or Oxycodone.

What happens is that if you do not have adequate control of your pain-- you will start "self-medicating." This means that you will increase your dosage, or add other pain meds to what is prescribed, and then you run out- and your pain skyrockets, because now you are out of meds-- and you will experience rebound pain.

Think about it, if you go into the hospital for surgery, they initially give you morphine in your iv. Then they wean you off, substituting VicodinES or Darvocet or whatever. They have you decrease the pain meds over a week or two. That is to avoid the REBOUND PAIN!

This is such a simple concept-- and it works for acute pain issues. But we aren't so lucky. We have chronic pain.

The concept of pain control for us is that we need to start a pain regime, and stay on it. Yes, you'll feel a whole lot better in a few days-- that's because you are CONTROLLING YOUR PAIN.

Chronic pain disrupts sleep cycles. When you can't rest, your body can't heal. When you can't rest, the seratonin and norepinephrine and melatonin levels in your brain get out of sync-- and not only are you in pain-- you are now showing signs of depression.

So the process of pain control may very well need to start with an anti-depressant. See if your pain decreases somewhat. If that doesn't help, or helps only a small amount, then the MD can add a low dose pain medication. If you still have pain, then adjusting either medication can help tremendously.

Sarcoidosis is a disease that brings unrelenting inflammation. This inflammation can be anywhere in your body. Sarc loves our hands and feet, and all the bones and ligaments in them It loves our joints-- and our spines. It can be in the blood cells themself, or the blood vessels can actually become inflamed. This is often the case with NS. We end up with "vasculitis" in our brains, and the blood vessels are pressing on a particular area. That area can't function normally because of the inpingement. It doesn't show up on CT's or MRI's-- and it is "transient." Meaning that it is there one day, and the next day, it's another area that is problematic. Sound familiar?

I am a firm believer in trying to change the stuff I can, before I end up on the morphine. I do have it here-- but I haven't had to use it in over a year! I know I'm fortunate-- and I know what it is to need the pain meds. I also am a 17 yr survivor from addiction to prescription pain medications. So, I am scared of them. I know what they can do to me-- if I allow it. so, for me, it has been a process of elimination and changes to control my pain.

this is where I found that dehydration was seriously a part of my neuropathy. Because of the chronic inflammation, I'm never not "dehydrated." That inflammatory fever we run daily is such an energy zapper.

The other component for me was that I've crossed over to being diabetic. I don't run real high-- about 120-130 constantly. For me, this "borderline" is enough to cause severe neuropathy and body pain.

The last couple of weeks, I've added osteo-arthritis and Rheumatoid arthritis to the mix-- too many years catching pitches for womens fast-pitch softball-- have destroyed my hands. The broken ankles from basketball (thank you becky s- where- ever you are) also add insult to injury.

I am amazed though, what my MD's thought was fibromyalgia- was actually sarcoidosis granulomas in my muscles and ligaments in my back. The bone spurs along my spine are also part of the granuloma process-- so that spot that tweaks and sends me straight into physical hell-- is part of this.

I'm fortunate, I was able to spend 3 1/2 weeks in a Pain Medical rehabilitation Center as an outpatient back in 1990. This is where I learned about Chronic Pain control, pain medications, anti-depressants and how pain effected our bodies and our psyches. It was also where I learned how important guided visualization and meditation, along with exercise and movement (even if you do it with spaghetti noodles and a can of soup as your weights) but in order to reduce pain, you have to move the area--to get the blood circulating and the oxygen from that blood into the cells, so that the area can heal.

I've found that defiencies in any vitamin can lead to illness. And our food is so very devoid of nutritional value. Mineral defiencies can reak havoc, and if our potassium levels drop, or our thyroid are out of sync, then we experience pain. We also experience crazy heartbeats, shortness of breath, "inside" the bone pain-- and more.

I can't urge each of us enough-- sort out what you are doing that is not in your best interest. What are you eating that you shouldn't be. What are you doing for yourself? Are you pushing yourself beyond your limits to get the kids to their games, clubs, activities? Are you trying to care-take someone else? Are you one of those that has to have a clean kitchen, and everything in order? Are you working 40 or more hours a week, and dying on the weekend. Or worse, trying to do all the stuff we do when we hold full-time jobs and a home?

Yep, they still need doing, taking places, dinners fixed, house cleaned-- husbands loved, -- I want to drop from exhaustion just thinking about it. And I'm no longer working. At least not at a "job."

Learn to ask for help. LEARN TO ASK FOR HELP. LEARN TO ASK FOR HELP. LEARN TO ASK FOR HELP!

It's a start,

Tracie

NS Co-owner/moderator