[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!!!

[JRC000]

At the risk of being POLYANNA:
I am taking outpatient PN therapy at St Paul Hospital here in Dallas, Texas
I have a severe balance program and have had three bad falls.
I am so limited in my activities. Parkland is an outstanding burn clinic.
I do not see the inpatient clinic (Iraqui casualities) but I do see the Outpatients.
One Hispantic patient, burned from the top of his head to his toes.
The therapist import that his positive attitude keep thier spirits up.
I am blessed and will never complain!!

[daniella]

Hi. Well the ankle pain started from what I thought was an injury cause I was a heavy exerciser in my past. So I went to the ortho and he put me in an airboot but with the xrays and bone scan just showed a little inflammation. I still remember he was like 10 days and you will be back on the bike. Then my symptoms got worse and worse and if you recall I was in bed full days crying through vicodin from pain. Then the neuro's etc started and the rest is history.
JRCOO you have a good outlook. When I was at Cleveland Clinic I saw many horrible things and suffering and even on here many are so much worse. I feel bad about complaining I do cause I know there is always a lower bottom. It is just hard to face the day but need to work on accepting all my issues and as my one neuro said living with my pain and now this stupid eye issue. I have made progress cause I do my walks etc but I just want to be a young healthy person. One day at a time. Thanks always

[Yorkiemom]

Well, I admire the positive attitude for sure, especially in such terrible circumstances. My heart goes out to the man burned from head to toe. He is to be greatly admired for his attitude.

I do find though that a LOT of neurologists are not very sensitive to people suffering from pain. They seem to go arm in arm with Rheumatologists.

It is like, come back in 3-6-9 months. Meanwhile, let me give you an anti-depressant, or one of the other drugs that you have tried with no positive results. And, "Are you sure you are getting good sleep?" Or the one that really fries me: "You appear to be suffering from anxiety." Do you have something stressful going on in your life?" "You need to see a shrink." Or, how about, "just learn to live with the pain."

People in pain deserve to have something to give them relief. In my area (Dallas), there are pain management clinics-some good, others not so good. Probably most are at least trying to help people, who are struggling to have a life, despite the hand that has been dealt them.

In Daniella's case, I think that she has been suffering from pain that someone should be finding answers for NOW. This has gone on way too long. And the eye problem that goes on and on and on? Well gee, I would be anxious too...

Cathie

[mrsD]

Is that I know someone who had terrible ankle pain (a young woman in her early twenties, I worked with). She also has the genetic problem--Marfan's syndrome. Well, she sprained her ankle, and in reality the doctors minimized her, like they did to you, Daniella. She, unlike her mother who is also Marfan's has less other physiological signs (aorta etc). Marfan's females are often not diagnosed, since they don't "show" the signs like the males.
http://en.wikipedia.org/wiki/Marfan_syndrome
The only reason she knew she had it was that her Mom tested all the kids.
Otherwise she could have gone a LONG time before anything showed up, if it ever did!

What ultimately happened was that a whole tendon in her ankle dissolved away.
She had to have surgery to reconstruct one. Marfan's patients have problems with collagen formation, and combined with the damage from the sprain, that tendon just died and was reabsorbed. (this took about 3 yrs).
Her surgery was successful.