Hi and thank you. I'm somewhat lost on the replies. Thank you Sue for that and emailing that person.I really appreciate it and your so kind. What type of doc is he? I have a referal to u of m but 2-4 mth wait and have gotten so many opinions.I may go to see Mayo too.Right now for the past while no dizzy so I don't know how they will help me at the er as the other didn't. David I'm sorry if I come off like I look for a quick fix but I don't think so. I have seen in the past 4 months 8 different docs and many opinions. I have had every test even if a 1 percent chance. Trying many meds,pt,so on and basically am worse. Any step forward gets ruined by a doc touching me.I agree I get very emotional but my pain through vicadin is hardly relieved. Also when docs are suppose to help you and not only do I not get better I get worse when they say it won't it makes me feel scared and lost.As for my issue its really the left inner ankle but the pain goes through to the foot/calf. My ssep and emg said pn. I think I have 2 dx one unfound. This is because for 3 months just there and why they thought it was tts but no tests showed and had 2 shots without relief. Then I started which have not acted up in awhile the neck feeling like it got shot and the right leg pain. My other tests do show inflamation such as bone scans. At this point though who knows. I may have the pn but also something like heel spurs in addition. I still feel like a huge piece is missing.
Lizzy I have posted before but I will give a little backround to not bore you. I thank you. Anyhow I thought at first it was an overuse injury and started the tests for that. It ruled out that and was put in an airboot in case. It didn't get better after shots to that area and they thought it may be a nerve problem coming from the brain/spine. Started the tests for that while just getting worse and basically bed ridden for 3 months. Now I can finally do errands but the pain basically keeps me in. I'm 28 and have a long history till this year of very severe anorexia. I had been in and out of multiple hospitals with cardiac issues and a very low weight. This may have a part of my current issue. Though better healing from the past programs I have been in is extra slow or also can cause nerve damage. Right now I have what they feel is complex.
Well thank you all and I didn't mean to come off a crying baby. I'm really scared, in horrible pain, and lost. I have never dealt with issues like this and am working on being more calm and less anxious.

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.