[caliTJ]

Hi, I have been searching the web for PN info and looking for an online community. After finding your board here, I have been pouring through the threads and it is relieving (sadly) to hear such familiar struggles. It brings comfort to know that I am not alone.

I was diagnosed with Fibromyalgia when my son was born in '05. That diagnosis never sat well with me. My symptoms just didn't seem to fit. We are under an HMO and I gave up searching for relief after feeling I was sounding like a hypochondriac to my docs.

Unfortunately my symptoms did subside here and there and now are back much worse. I finally cornered my doc and asked him to think outside the box and try to "rediagnose" me. And now I sit with a PN diagnosis. I have a battery of more tests scheduled, so I won't know more for a bit on what type or what extent the neural damage is.

My husband had to care for his ailing father who had MS for 10 years and eventually passed 9 years ago. The idea that I could become a burden to my husband is overwhelming.

I have already felt that I am slowly losing all the things that brought me joy and value. I am a photographer...or was I should say. I finally closed up "shop" last month after the pain of walking has become too much for me. I love to garden and now I can only attend to my garden when I am well and it is suffering.

Explaining my "walk" and hand pain to family and friends...well how do you even start???? I just try to hide it whenever possible. I am becoming an expert at disguising my condition. Choosing to stand when no one is looking and such.

Thank you all for reading this and I hope to find lots of information and HOPE here.

TJ in California....Santa Barbara area

[BEGLET]

Hi - sorry to hear you are now dealing too with this disease- but at least sounds like you are getting testing - etc. as needed - hang in there! I'm glad you found a good doc in your area - and you do live in a beautiful site! I hope you do have a form of PN that will respond to either pain management or other resolve so you can resume some of what you used to do!


On that - the photography - I used to have a camera in my hand every second I wasnt doing the business thing - and had a really decent set of photo equipment ... biggest mistake I made I think when I got sick (8 years ago) was sell most of my camera equipment (at a fraction of what it was worth) because I realized I couldnt move around like I needed at events etc to shoot.... huge mistake.... my PN hasnt improved and motility is very different and no - I cant shoot what I used too - but I missed my photo stuff so much had to get a real decent digital slr and take what I can where I can (usually around the house) but still again now have the satisfaction.... there will always be people and critters around to shoot - and you dont know where the PN is taking you - hang in there! The great thing about puters too - where we used to have to stand for hours in the darkroom is now a few clicks on the mouse! Awesome!

Hope your testing is revealing - and keep us updated

[caliTJ]

Thank you so much. I appreciate the caution against moving too quickly with my equipment. I think I could help myself a bit by removing the battery grip, but I can't find the darn battery door!

I think I could at least sell off some of the large lenses, especially the long ones that are mostly for wedding work.

I might start exploring macro work, as I have been specializing in children. I unfortunately don't think I'll ever be able to keep up with them again.

I spoke with my doc today and she is putting in a request for physical therapy and I have a lot of hope that will improve my current state.

Thank you again for your reply!

[Leslie]

[QUOTE=caliTJ;343518]Hi, I have been searching the web for PN info and looking for an online community. After finding your board here, I have been pouring through the threads and it is relieving (sadly) to hear such familiar struggles. It brings comfort to know that I am not alone.

I was diagnosed with Fibromyalgia when my son was born in '05. That diagnosis never sat well with me. My symptoms just didn't seem to fit. We are under an HMO and I gave up searching for relief after feeling I was sounding like a hypochondriac to my docs.

Unfortunately my symptoms did subside here and there and now are back much worse. I finally cornered my doc and asked him to think outside the box and try to "rediagnose" me. And now I sit with a PN diagnosis. I have a battery of more tests scheduled, so I won't know more for a bit on what type or what extent the neural damage is.


caliTJ -

I can say that I do understand your sadness. My PN only started 3 months ago but already I can see significant changes in the way I function every day. My husband is an avid college footbal fan and there is one school in particular that we go to many of the games. My husband is so excited and making plans for these games. "We'll go to this game and then we'll go there, he says. I feel so broken hearted as he refuses to except that I can't go and do all the long, long walking this is required to get to the games.

[MelodyL]

Hi. Oftentimes, spouses have a very difficult time dealing with ailing partners.

It is what it is.

I believe that when people take vows "for better or worse, in sickness or in health", well they mean exactly that.


In sickness and in health. If you can't get through to your partner that you are not able to go to football games, and outings, just bring him over to the computer and have him read some of these posts.

He'll understand eventually.

Not easy, I understand.

You have friends here.

You take care,

Melody

[caliTJ]

Oh Leslie, I'm sorry...tears. It must be hard for our those closest to us as (at least for me) I can be capable one day...and then not the next. For me I just feel so sad for my hubby. It feels he was born to just be a caretaker. In some ways he is so good at it, and others he just wants to STOP needing to be thinking of others all the time. This may be a good time to mention he is a firefighter...often helping invalids and shut-ins.

Our children are young and so active. He often has to take on so much more than I can. But everyday I force myself to do as much as I can. Of late I am trying to be near him, even if I am just seated or laying down. I was going to bed and avoiding the rest of the house when I could, but he was feeling so lonely.

[daniella]

Hi. I can really relate to you and the sadness and I know what a toll this takes on my mom. When this first happened to me I was almost ashamed of my pain and limits so I barley opened up to others. Now I do open up and though my friends don't understand and some family it helps to use my voice. My life is at a hault. I can't go to school or work and just sitting in somewhat comfort has become my new pleasure. I am working on finding some bright spot in my day and focusing on that and waiting for the harder times to pass.I wish I had more to offer to you. Just hang in there and try to find other things that you can do and get some enjoyment. Also "pretending" to not hurt or have issues I think can really take a huge toll which can add to pain in my eyes. You may want to think of slowly opening up to people.

[lefthanded]

Hi caliTJ . . .

I am an artist with PN in the feet and bilateral carpal tunnel, left worse than right (of course, I am really lefthanded!) I also struggle with other inflammatory conditions like Crohn's and some arthritis thrown in.

I have found myself in an artistic slump at the very time I need to be painting. I am not always sure when I will be able to hold a stick of pastel or a paintbrush again. . . .and standing, walking. . . somedays. . . no! Like you with your camera, art is what I have left after being unable to return to my original career. And I have so many paintings inside waiting to get out!

I hear ya' about how to describe/explain the pain and how it is disabling. When people meet me they don't see a sick person, so the uphill battle is on to co-exist with able-bodied people in a world that doesn't have time for excuses. I try to plan activities that push me to create. . . this fall I will be doing a five day outdoor pastels workshop on the Outer Banks. At least that is the plan . . . but between feet and hands and the digestive system that fails me regularly, I am taking my chances. I am banking on being able to create and forget my pain for a while. . .and luckily the instructor knows it and is supportive.

I feel I am at the stage of just saying to my doctors, unless it will arrest the further worsening or cure it, don't push any more new drugs on me. Drugs I have to take for my Crohn's got me here in the first place . . .

So I wanted to introduce myself and say "you've got a friend. . . "

[Leslie]

Originally Posted by caliTJ

Hi, I have been searching the web for PN info and looking for an online community. After finding your board here, I have been pouring through the threads and it is relieving (sadly) to hear such familiar struggles. It brings comfort to know that I am not alone.

I was diagnosed with Fibromyalgia when my son was born in '05. That diagnosis never sat well with me. My symptoms just didn't seem to fit. We are under an HMO and I gave up searching for relief after feeling I was sounding like a hypochondriac to my docs.

Unfortunately my symptoms did subside here and there and now are back much worse. I finally cornered my doc and asked him to think outside the box and try to "rediagnose" me. And now I sit with a PN diagnosis. I have a battery of more tests scheduled, so I won't know more for a bit on what type or what extent the neural damage is.

My husband had to care for his ailing father who had MS for 10 years and eventually passed 9 years ago. The idea that I could become a burden to my husband is overwhelming.

I have already felt that I am slowly losing all the things that brought me joy and value. I am a photographer...or was I should say. I finally closed up "shop" last month after the pain of walking has become too much for me. I love to garden and now I can only attend to my garden when I am well and it is suffering.

Explaining my "walk" and hand pain to family and friends...well how do you even start???? I just try to hide it whenever possible. I am becoming an expert at disguising my condition. Choosing to stand when no one is looking and such.

Thank you all for reading this and I hope to find lots of information and HOPE here.

TJ in California....Santa Barbara area

TJ - I was in the drs office last week and while waiting I saw the Oprah segment with Dr. Oz. He was doing his medical thing and introduced a lady in the audience who had suffered with fibromyalgia for 7 years. She said that she had been to a conference where dr Oz spoke. She sent a msg to him about her suffering. He met with her and helped get a new doctor and a treatment plan. She said that she had been pain free for over a year and stated that she was taking supplements. She didn't go into the details of her illness but she did state that which left the impression that vitamins helped her...

[daniella]

I want to meet Dr Oz very bad. He seems like a very good doc who really listens. He even said how important it is to find a doc who will look outside the box and really work rather then the ones who just look at what is in front of them.I said no more flying for docs but the is one I would fly for.