I dont think that you have come off as a cry baby at all. We have all felt and at times continue to feel scared, and lost and of course in pain. Its not easy but trying to stay calm and take one day at a time helps us in the long run to deal with this and live our lives the best we can. Having said that, I am not always able to do it,especially when something new pops up or i get the results of a test that show something i dont want to have. I recently got very bad news from a multi slice cat scan of my lungs that sent me in to a tail spin for a while. Im not happy with it now, but what can i do, just keep putting one foot in front of the other and hope to come out the other side someday.

Nope. You are not a crybaby, like many of the rest of us either now, or in the past, just scared and with no direction in your health care.

Has anyone checked out your thyroid?

I know you have had a lot done, but try to get your tests together, if you have copies, and post them as LizaJane was mentioning. There are a lot of people on this forum, who have a lot of knowledge and someone might see something that is important.

Cathie

I was responding to this thread's heading, "Crying and Lost!",and the confusion that followed. I don't think that Daniella picked those words lightly, is lying, or exaggerating.

After the crying and confusion, then what?

Fear is a big part of having a chronic health condition that our doctors haven't been able or possibly willing to diagnose or effectively treat. The link to the American Chronic Pain Association provides 1) ways reduce or eliminate fear, and 2) how to get direction in health care, among other things. There are many other sites, books, and articles that provide the same thing, but just studying the ACPA site shows that there are alternatives to helpless victimhood...the possibility that WE can make it better through our own actions and attitude, including getting the help we need from the right people.

Chronic fear, frustration, or anger are hard on us physically. These strong emotions increase our symptoms dramatically, sap our energy and vitality, cause confusion, and prevent us from doing what we have to do to get a life again outside of our pain, including finding ways to reduce or eliminate the pain.

We can start on the road from being a victim and patient when we cool down our feelings of fear and frustration. We can then become a strong and vibrant person, exercising choices to powerfully and effectively deal with our illness and our lives.

to Mayo Clinic and this is the truth. My Neurologist said if it was her
she would sell my house and move there to a small apartment,right
by there Clinic. She helped start the one in Chicago,and i'm afraid
i will loose her back to Chicago soon. I told her to make room for me,
she's been so good. I wish you luck and plan on staying a little longer
Than they say. There is ABSOLUTELY no cry babies in this forum or
any others in Neurotalk. Sure we get scare and cry but with the pain
we have we are not babies..We are in pain and it hurts,right now my
hands hurt,why am i using them,to take my mind off the pain.

The other day i came home terrified,i was told i had to go to the Cancer
Hospital here to find out if i have Lymphoma. I got on Neurotalk boy
I was scare,no i was frightened and not thinking. But a group of wonderful
people gave me a chant to say over and over and i do,bess there hearts
i thought things through (they know who they are) We care about you
honey your younger than my youngest. I'm glad you can call your Mom,
and you can always e-mail me. But you have a great group here Sue

Hi. Thank you. I understand about how emotion plays a role in recovery. I have spent many years in and out of residential therapy and outpatient therapy. I have learned many coping mechanisms. I just am not sure how to deal with this issue I guess. In my eating disorder recovery it was about finding healthy coping mechanisms. I guess it was a lot of self talk and following the guidelines set for me. Now with this pain I can barely think sometimes and I'm not seeing any relief. Also the people that I try to listen to the docs have only made me worse. So yes the fear is there but then the fear turns to reality.I can't distract myself easily because the pain doesn't allow me out or even lay in comfort. I feel that if I had more results and anwers I could deal with it but this unknown of what is going on in my body and things getting worse makes it harder.I have had every test like I said and the findings which are more mild doesn't go with the bed ridden pain on vicadin. I'm trying to take one day at a time and focus on what I can do.
Heyjoe and sue I'm so sorry for all your going through too and the others. I'm here for all you too.

Several things are a big help for breakthrough pain.

1. Believe it or not, two Alka Seltzers give the pain relief of a good dose of morphine, without the constipation or dopiness. Alka Seltzer is aspirin, citric acid, and heat-treated baking soda. The soda/citric acid mixture dissolves the aspirin, and the treated baking soda causes the dissolved aspirin to enter the blood stream almost as quickly as if injected. The pain relief occurs within minutes and lasts for hours. As a bonus, this way of getting aspirin doesn't cause stomach irritation or bleeding, is good for your heart, and reduces the risk of several types of cancer. The side effect that stops me from using it more often is tinnitus. I always have a good supply on hand, and use it probably once or twice a week.

Follow instructions on the label. It won't stop nerve pain (not that anything short of massive opiate doses does), but it takes the edge off and allows sleep.

2. Lidocaine skin patches deaden an area effectively for about 4 hours. The lidocaine gets deeper than you'd think. I used it for extremely painful muscle cramping in my shoulder caused by a ruptured cervical disk, and it killed the pain even beneath my shoulder blade.

There are lidocaine salves which work similarly. These are by prescription only and not for daily long term use.

3. Pulsed micro-electric stimulation of the area interferes with pain transmission and reduces pain for a time. After twice daily use for a few weeks, it will reduce pain for 24 hrs after each use. After daily use for months, it will reduce pain for several days. Unlike items #1 and 2 above, pulsed micro-electric stimulation promotes nerve and muscle healing and retrains your nervous system to restore normal reaction to nerve ending stimuli.

The latest and greatest is "interferential electrical stimulation". My physical therapist uses it, and it's very effective. I've also had great relief with the similar, but overpriced "ReBuilder". Use the search function of this forum to find out where to buy and how to these units.

4. Opiates don't kill nerve pain except in very high doses. I used big doses of oxycontin for the disk injury. They stopped the shoulder pain which allowed four hours of sleep (the lidocaine patch gave another 4 hours), but had NO effect on my PN pain. A bigger dose of oxycontin or stronger opiate kills all pain.

Opiates are relatively safe, don't cause dopiness if the dose is appropriate for the pain and have minimal serious side effects. The opiate side effect of extreme constipation make them for occasional use only for me. Still, they're handy to have on hand for emergency use.

5. Cold is worth a try. For neuropathic feet, put your feet in an Epsom salt solution of cool water. Add ice cubes to make the water gradually very cold. Keep your feet in the cold water for about 20 minutes. Then, let the feet warm up naturally, i.e. do not apply artificial heat. If this helps you, it should give relief for several hours, and is good for the health of your nerves in the area. You can do this as often as you like, up to hourly.

Epsom salts are magnesium sulfate. The magnesium absorbed through the skin helps calm nerves in the area and reduce pain.

6. Supplement with a high quality calcium/magnesium formulation, about 1000 mg. of elemental calcium a day, 500 mg. of magnesium. Magnesium calms the nerves and relaxes the muscles. Good formulas are mixtures of mainly organic, chelated, or acetic salts. You need supplemental vitamin D, about 1000 units, to utilize the calcium and magnesium. Use the search function of this forum for a lot more about magnesium.

7. Meditation is practice in directing the attention away from where you don't want it to go. After six months of daily guided meditation practice, mediators have a much increased ability to deal with severe pain, as opposed to the severe pain dealing with them.

Meditation, healthy diet, supplements, and exercise (including yoga and tai chi) are more of a long term fix, but all help, and all work together to make each other more powerful and get the breakthrough pain reduced to tolerable levels.

I'll post this in a separate thread, as it might help other people.

I read this on the other forum and which cancers does this reduce??
And Tai Chi is beautiful but once again would have to be in chair
or be on my but chi. Thank for your good wishes D,this to shall pass
(won't it) Sue PS Hey Joe how youse doing pps i was thinking
D have you had your Thyroid checked?

ive had the blood tests for thyroid. why would you think i need it checked?

I think she may of meant me about thyroid? I may be wrong.I think sue wanted to know how you were feeling? I went to the endo and she didn't so that unless it was done by the other doc in the multiple blood testing or maybe the endo did in her bloodwork or the urine testing? I'm sorry if this is stupid but I thought if thyroid problem weight was an issue. I will say before this in my recovery they were concerned because of the amount of calories I needed for weight gain and it was an extreme high amount. This is sometimes normal for recovery but not usually at the level I was on. Also I had and did complain about the liquid I drink. On average about 5-6 liters and this is being unactive. I told everyone doc wise but of course no concern.
Wing thank you so much and for your email too. I will respond about some coping thing on that thread so others can see. I really found your response so helpful. You should teach a class or write a book.

Im doing ok Sue thanks. Its a waiting game now of going back every 3-6 months to see how things develop or not.............Im more of a tackle the problem head on kind of person, no matter how big or daunting. Im not good at long term wait and see hanging over your head kind of things, like PN..hah....and now pulmonary, guess this will teach me a lesson on that.
Thanks for asking, in the four years ive been here you are one of the few who has asked. I hope you get some good answers yourself on your tests.