[daniella]

Hello. Ok I am turning into a nut case and a bad person. I came to Fl cause f the eyes which have had no improvement here and in turn has set my leg off in huge pain back to vicodin and even after my move to Ca I was not in this much pain. I am thinking it is from the humidity or maybe another fluke.Will my body adjust to the humidity or is this my fate and should I go back to Ca? The eyes were hell there but the same here but maybe it is going to take a long time. I am on restsis now for them. My mom and I are fighting and I feel so guilty and horrible how mean I have been to her this week. She is my strength,hope,and greatest mom and has done so much support wise listening to me,getting me to so many docs and the cost,and moving me all around. I am like 12 again how I am acting.As many know my docs have really been no help and I have lack of pain control. I am now considering the scs but there is only a half chance it will even do anything and since for me a lot is unknown still it is scary. My mom thinks I need to see a psych because of how upset I get.I have seen so many in the past with no change in my mental state actually how I am now is a huge improvement cause at least I am physically healthy in my other issues. Now I know here everyone has a lot going on with their health and compared I should feel blessed. I do feel though a lot of my fear is cause it happens. Like the leg which started with what we thought was an injury and a year and half later many docs and tests,meds,etc still horrible,then the eyes that was suppose to take a few weeks and now has been 5 months of pain,then the back. None that go away. I have a negative attitude my mom says but how am I suppose to act. I try to hold to hope go to the docs,get let down,then something else happens,etc. The cycle continues.I know there are worse off in the world so I feel bad but really this is so stressful and painful to face the day.I am young and even if I were older this is bad but I should be able to rollerblade,run,be active. My post is for I don't know what.I just wonder too how you all stay so strong and not get mad at your loved ones? I remember when this happened and after all my tests the neuro said now it is about living with your pain and pushing through. I thought she was nuts but found now it is true. I push myself through my pain to do as much as I can take my walks etc. If many recall when this happened to me I was in bed full days. So on that note I have made progress but still it is so slow and painful.Things could always be worse though I say cause I know there is always a rock bottomer. Sorry for my cry baby attitude cause I get the feeling some think I am here but just felt I need to vent and really don't know where else to do so at the moment.Thanks for listening.

[MelodyL]

Daniella:

Mind if I ask exactly what you have been diagnosed with (as far as your neuropathy is concerned?

It's been a while since I've seen your first post and you have so much going on I just am curious as to what the doctors have told you.

Thanks much.

Melody

[daniella]

I have pn but my tests show it is mild and this was when I was in bed full days crying through vicodin. Now though high pain I am able to walk etc. So they think my pn is more similar to rsd. It is in my inner ankle/foot/calf the severe and now I have other issues in my right leg. One doc thought I may have fibro too. See all over the map. I am diagnostic tested out many of the docs think though I may try to get another mri of the brain/spine since the back though that feels slightly better but the legs are worse. Thanks Mel

[dahlek]

to try again. While small and many medium nerves don't show up on such tests, the quality of the machine used and the tech and then the docs reading the results can be ever so valuable to test results.
Real PN pain is stressful under any set of circumstances and it sounds as if you've got some added stressors that aren't helping things along. It's easy to say 'chill out', it's even harder to do so. But, it's essential to self-preservation. Sometimes, just 'getting by' has to be enough.
Find the parts about it all that can be laughable? By that I mean, when I recall all that I've gone thru w/my own diagnosis, I gotta say, that there are moments that stick out in the whole process -from the time I was admitted to the hospital to the slew of tests, more tests and then even more tests I've been thru where there WERE really stupid or absurd events or people crossing my path. I'm amazed and appalled at the same time? Kind of like a very cheezy science-fiction movie, really in all hindsight.
I wish I could be more definitive by way of guidance. Just know that folks here care! 's - j

[daniella]

Thanks and for the pm. Truly everyone here is so kind and it helps more then words can say. That is funny about the things that happen. At times I do make jokes and my mom gets so happy. I swear some of the stuff that happens at the docs office should be on tv cause it is a joke. If you don't laugh that alone can cause the stress level to go up a lot. I try to wake up and focus on today. At this point I am happy in functionable pain and no more problems that crop up. It is not ideal but better then the alternative.Well thanks so much.

[Silverlady]

Makes me want to put my arms around you and hold you and let you just cry it out.

Life isn't fair sometimes as I well know. I worked as hard as a body could work, with 2 boys; an invalid mother and father and a husband and a very high stress responsible job. Long hours, worked with pneumonia more times than I can count. Broken legs, broken feet, knee surgeries, abdominal surgeries, and thru it all, I went back to work as soon as I could. Lived for time off and there was very little of it. But I set the office up for a big corporation, set up all the book keeping, manuals, etc. and no one else was trained. I was expected to do it all. I did because I had boys to put thru school and my Mom's expenses to pay. And I was 28 when it all started. No life wasn't fair to me either.

I finally got enough money put away that when my company offered a retirement package when I was 55 years old, I jumped at the chance to have a normal life. I retired at 55 and 3 years later I discovered that now I have an incurable disease that there is no medication for and very little adequate treatment. No life isn't fair but we weren't promised that it would be. We just have to make the best of what we've got.

O.K. now, let's take stock,
1. How are the eyes?
2. How, when and where is the pain in the ankle?
3. and what kind of pain are you getting in the ankle and leg?
4. Are you taking anything for pain?

Then, while I'm waiting on the answers to this, call the doctor and ask for an MRI of your back again. And ask for a copy of the report and the film.

Hugs to you kiddo!!!

[daniella]

Hugs back at you. You are one of my rold models here to keep fighting because you are so strong. Anyhow the eyes are the same horrible as in Ca. I just started restasis but it take 6 weeks. The doc thought I would see a difference in the eyes right away. My pain is constant but at different levels. It is in my inner ankle/foot/calf of right and now it has spread to my left but not as bad but today in that leg I am also flaring.The pain is like sharp,no circulation in the ankle and calf,a twisted feeling in the better leg and needles in the foot feeling.I have a hard time exlaining what it feels like because some of what I am feeling I can't describe other then it is the worst pain I have ever felt like getting shot in the leg but a constant feeling. I take vicodin for pain but before Fl I had only taken once in 6 months and since being here I have taken it 2 times in a week and really could take it every day with the pain I am in but after it wears off I feel like a bus hit me. I have tried so many meds like tramadol,neurontin etc with no change in pain level. I think what is also really bothering me is what a horrible person I have become. I am very angry and my outlook is very bad which I take out on my best friend my mom lately. She is so supportive and has done everything for me and I treat her in a bad way. I am like split. Many times I am so thankful and tell her how much I love her but then when I get frustrated or don't get my way like I am 12 I am mean.I rely on her too much too crying etc and she needs to live her life cause I am an adult. What is wrong with me? I wish I didn't do that.Thanks I will keep you updated always
One more thing Silver lady you have dry eye? Are you on restasis and do you have plugs? I am going to see about getting the plugs and have been on restasis for a wek but it takes what they say is 6.Ok thanks

[Silverlady]

Daniella,
I had the silicone plugs put in about 3 years ago. The first ones hurt my eyes terribly, then the doctor put in the ones that are called "Smart Plugs". They gave me instant relief. They were supposed to last about 3 months. Then one of them disappeared, who knows where and the other one caused an infection around it. But they had given me so much relief that the doctor suggested cauterizing the tear ducts. We did this about 2 weeks after he removed the infected plug. I have to say that I do much better with the tear ducts plugged. There are so many different types of plugs. Be sure your doctor puts the correct size in your eyes. There is actually a little gauge he should have to measure the size with. Without it, you may not get a good fit. The idiot doctor who did the first ones put two in one eye and one that was too big in the second eye. These caused me so much pain that I had difficulty driving home. Had to go to a doctor here in order to get them removed.

Good luck. Yes, the Restasis helps a lot of people. I've been using it for about two years and I haven't had any infections in that time frame.

About your ankle, have you seen a podiatrist to have molds made of your feet and get orthotics? They have helped my ankles tremendously. My ankles are collapsing and this causes the tendons to be constantly irritated and sore. The orthotics stabilize my ankles and feet.

Billye

[daniella]

Thanks. I have been to the eye doc 15 times in 5 months with 5 eye docs so I know the idiot issues you are talking about. I have a really good foot/ankle doc in MI and when I felt better I was going to get orthotics but now there is no way cause I can't handle anyone touching my leg. I wear walking shoes that are a good brand. I am sorry about your ankles. See mine though is not a bone issue(I do have osteo though) or tendon well from what the tests show as why it seems like rsd. I am going to try the plugs I think especially if I go back to Ca.Maybe the combo of restasis and plugs will help and I will ask about the fit. Thanks so much.

[mrsD]

I guess because I have forgotten if this was posted before:

What triggered this ankle pain? Did it just "appear"?