Re: Update on me

January 5, 2005

Ginny,

I am so sorry to hear about your dx of full body. I remember hearing those

words, thinking NO WAY. There are still a few spots on my body that don't burn,

etc. I am lucky, have very little swellng, and the rash contains itself to

certain spots.

My blood pressure was always very low. I've watched during procedures, etc. and

as my pain levels increase, so does my BP. My Dr. knows the amount of pain I'm

in by my BP and he's certain that is why it increases. On better days, it can

be fairly normal..

This weather doesn't help much, I'm sure. You are probably having similar

weather to ours here in NJ. Cold, damp, etc. which translates for me into

painful.

I hope you are feeling better this eve...

Hugs,

Jo

January 5, 2005

Hi Ginny and Jo!

Would you please e-mail me and let me know what it is like having the RSD full body and how you feel. I have had it for 16 years and feel pretty awful most of the time and have told my husband that sometimes I am fearful of getting it full body. Maybe I already do - no one here can figure out why I cannot get my pain under control, and even with my pain meds, it really does not help alot to take them. They are only taking the edge off of my pain. If you wish to e-mail me directly, you can e-mail me at sweethearthelper@... Thanks, Conniejomal1@... wrote:

Ginny,I am so sorry to hear about your dx of full body. I remember hearing those words, thinking NO WAY. There are still a few spots on my body that don't burn, etc. I am lucky, have very little swellng, and the rash contains itself to certain spots. My blood pressure was always very low. I've watched during procedures, etc. and as my pain levels increase, so does my BP. My Dr. knows the amount of pain I'm in by my BP and he's certain that is why it increases. On better days, it can be fairly normal.. This weather doesn't help much, I'm sure. You are probably having similar weather to ours here in NJ. Cold, damp, etc. which translates for me into painful.I hope you are feeling better this eve...Hugs,Jo

January 6, 2005

Connie,

I swear I will tell you how I feel when I have a little bit more time to write.

I just don't have the energy right now to go into it.. with all the classes and

studying and 14 hr. days, I'm just beat.

Hugs,

Jo

January 7, 2005

Jo..unfortunately my pain level isn't down much and my swelling has increased. The weather here is aweful and will continue to be for the next week which definetly isn't helping...I had to shovel my car out today and shoveling ice and 6 inches of snow under thick ice was no fun and increased my pain level alot. I haven't been sleeping much because of the pain which also doesn't help. My legs and feet are the most painful which is new for me since the RSD started in my neck and right arm. I just hope when I see my dr on the 17th he can adjust the pain meds to give me some relief. Hope you are surviving the long hrs studying and the stress of everything going on..Hugs..Ginnyjomal1@... wrote:

Ginny,I am so sorry to hear about your dx of full body. I remember hearing those words, thinking NO WAY. There are still a few spots on my body that don't burn, etc. I am lucky, have very little swellng, and the rash contains itself to certain spots. My blood pressure was always very low. I've watched during procedures, etc. and as my pain levels increase, so does my BP. My Dr. knows the amount of pain I'm in by my BP and he's certain that is why it increases. On better days, it can be fairly normal.. This weather doesn't help much, I'm sure. You are probably having similar weather to ours here in NJ. Cold, damp, etc. which translates for me into painful.I hope you are feeling better this eve...Hugs,Jo

May 10, 2008

Glad to see you posting! Hope all goes well for you! Our thoughts and prayers

are always with you.

debra b

Update on me

Hi all,

I know it's been a little while since I've posted an update on

myself and for that I am sorry. Part of the reason I haven't is

because I've had some huge flares from my fibro occur. One of

the reasons that it has flared so is because of the work I've

been trying to do to break in my orthotics which is doing a bit

better now thank goodness but still have a way to go on that.

The other issue that I have going on is that I have a very tight

tendon in my right ankle. It's the right Achilles tendon. This

tightness has to do with the fact that I also have Cerebral

Palsy. I have been trying to stretch this thing for the last

few months and not getting anywhere. It's now to the point that

I can feel the tendon when I try to walk and like nearly 30

years ago I'm dealing with a limp again. So much so that now I

am aware that other people (other than my mom that is) who see

me may notice the limp as well. So why do I bring this up?

Well, because the other day when I went to meeting for worship

(in the a.m. on Wed) and was waiting for this meeting for

worship to start I saw one of the ladies come in to the room.

She then sat down in the row in front of us. After a few

minutes she said to me (loud enough for everyone to hear), " So

Miss Kristy, why are you limping this morning? " I was so

surprised that she said that. I was trying to keep my composure

and believe me that wasn't easy. So I said, " I have a problem

that needs to be fixed " and then after that said, " I'm under the

care of a Podiatrist for it " . The reason I added the other one

is because I knew what the next question was going to be.

If there were others who noticed the limp they were polite

enough to not say anything or they never noticed. That is until

Wed. I just couldn't believe she did that.

I just hope she won't say anything again the next time because

otherwise I'm going to have to take her to the side and say,

" Can we discuss this one on one elsewhere without others around "

or something like that.

So even though I knew I was going to have the surgery in the

Summer I knew now that it had to be done. Also, I wouldn't have

allowed myself to let this thing get any worse. The reason is

because of my pain threshold being so messed up now and I don't

want that to be further destroyed.

So when I saw my Podiatrist Wed afternoon I said " let's do it " .

It's time to get this show on the road. He then proceeded to

examine my feet further. And when he did the part where he

pushed my feet back (and showed me the differences between each

ankle) to check my ankle not only did I feel it in my knee but

when I got home that afternoon I flared like you would not

believe.

But I am doing a little bit better each day. I don't have a

date for my surgery yet (which is also going to include having

to fix my right big toe-he made that pretty clear that it has to

be done) but I will as soon as I get my clearance for surgery

which means I have to go get a physical from a primary care

specialty doctor which will get done on Tues. As soon as I have

my date I will let everyone know.

Other than that I'm hanging in there. Glad to see how busy the

group has been and I want to welcome all the newbies that are

now in the group.

Kristy

Co-Owner

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May 10, 2008

Kristy,

What a load of issues you have had. Adding to that, insensitivity!

How could anyone be so callous to you and in church also. You have

handled it well.

I do hope your surgery goes well and makes things a lot less painful.

Margaret B

>

> Update on me

>

> Hi all,

>

> I know it's been a little while since I've posted an update on

> myself and for that I am sorry. Part of the reason I haven't is

> because I've had some huge flares from my fibro occur. One of

> the reasons that it has flared so is because of the work I've

> been trying to do to break in my orthotics which is doing a bit

> better now thank goodness but still have a way to go on that.

>

> The other issue that I have going on is that I have a very tight

> tendon in my right ankle. It's the right Achilles tendon. This

>

May 10, 2008

Hi Kristy - Thanks for updating us. Some people just don't know when to keep

their traps shut. I hope this lady doesn't keep making your health a public

issue at church. I'm sure you'll deal with her if you have to. I hope and pray

that this surgery will help you a great deal with walking and your pain. Take

care.

Jeanne in WI

Hi all,

I know it's been a little while since I've posted an update on myself and for

that I am sorry. Part of the reason I haven't is because I've had some huge

flares from my fibro occur. One of the reasons that it has flared so is because

of the work I've been trying to do to break in my orthotics which is doing a bit

better now thank goodness but still have a way to go on that.

The other issue that I have going on is that I have a very tight tendon in my

right ankle. It's the right Achilles tendon. This tightness has to do with the

fact that I also have Cerebral Palsy. I have been trying to stretch this thing

for the last few months and not getting anywhere. It's now to the point that I

can feel the tendon when I try to walk and like nearly 30 years ago I'm dealing

with a limp again. So much so that now I am aware that other people (other than

my mom that is) who see

me may notice the limp as well. So why do I bring this up?

Well, because the other day when I went to meeting for worship (in the a.m. on

Wed) and was waiting for this meeting for worship to start I saw one of the

ladies come in to the room. She then sat down in the row in front of us. After

a few minutes she said to me (loud enough for everyone to hear), " So Miss

Kristy, why are you limping this morning? " I was so surprised that she said

that. I was trying to keep my composure

and believe me that wasn't easy. So I said, " I have a problem that needs to

be fixed " and then after that said, " I'm under the care of a Podiatrist for it " .

The reason I added the other one is because I knew what the next question was

going to be.

May 10, 2008

Kristy, so nice to hear from you honey. I am so sorry to hear of all the

challenges you face. I just cannot imagine what you must be going through.

Did the lady at church know that you are chronically ill? Do you believe she

thought you had fallen or twisted your ankle? Just curious. I know she should

not have asked that question like that in front of everyone. I guess I

understand what you mean. It was drawing attention to something you would

rather not go into explanations over.

I can understand why you have been flaring so badly. It seems we just can't

take much out of the ordinary crap in our lives because the fibro beast thrives

on it.

Sweetie, I am so hoping you feel better in the near future and that things will

work out. And facing the surgery will be unpleasant. But I guess try to look

at it from the point of view of " after recovery " . Perhaps when you get through

it, it will make life a little better.

(easy for me to say huh?... It is not my surgery). Just so sorry to hear of

such a good person going through so much.

love and hugs,

Debra V.

Subject: Update on me

To: Fibromyalgia_Support_Group

Date: Saturday, May 10, 2008, 4:18 AM