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  #231 (permalink)  
Old 08-12-2002, 08:11 PM
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Hello Everyone!

Now everyone in pain today, don't worry about venting or complaining, pain is such a horrible thing especially since it is constant! I am sure everyone of us has had our turn so please don't feel guilty. We are all here to help each other and when one is down I hope I can help you up! Everyone is so supportive and I am very thankful for all of you and that we are able to share our lives.

Gentle Hugs to all of you!

I was wondering about the surgery ??? too?

Now I had surgery on both of my legs and had a epidural in my spine. I had the surgeries 6 weeks apart and I tell you afterwards I did NOT have any fibromyalgia for 6MONTHS! I was praying I was cured but atleast I had a break from it.

CairalBe, I have some weird thing going on with my hands too! It started as little itchy bumps, Intensely itching, I was scratching while I slept and didn't know. This is on my palm side and affects the underside of my hands, my fingers are starting to get willowly lines up & down them...I tried all types of creams and water makes it even more itchy! I do get the skin to split because I cannot STOP scratching...finally my DH had some cream he got from his doctor for his psoriasis, the itching has stopped but my fingers (4) look like they are shriveled. My thoughts exactly...Now What Now I have to wear a plastic glove on that hand when I cook...heck I have no idea what it is? Any thoughts anyone? Or does anyone else have this?

I pray we all have a pain free day tomorrow with cooler weather for the southern ladies too!

janet
  #232 (permalink)  
Old 08-12-2002, 08:24 PM
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Janet,

I hope you do see a dermatologist. It sounds a little like a dermatitis.

Psoriasis starts with bumps buts gets scaley... But if you keep using the cream it will only mask the symptoms. If the cream is cortizone, you're absorbing the steroids through your skin...if it's anti-fungal, you could make yourself ill absorbing all that stuff after a while.

Go get it looked at, and ger the right medicine. (You might be allergic to the rubber gloves for all you know!) LOL!!

Feel better !

Val
  #233 (permalink)  
Old 08-13-2002, 02:02 AM
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I still hurt!

Thanks Val and Janet,

Sitting here typing my fingers tips are still open with gaping holes. Worse on my right hand then my left because I am right handed. My minister, she said to me, "Now, what has been making you upset, don't your hands get this way when your upset?'' "Let's see constant pain!!!

Hummm what could that be or what is causing this?"

She then said, "Why not come to our healing service on Friday, they have a special group called GISA Healing Sanctuaries. To use the healing touch, energy based therapeutically treatment modalites to assess and treat the humn energy system , thus affecting physical, emotinal,metal and spiritual health and healing. The goal in healing touch is to restore wholeness through harmony and balance. Now, I am not a doubter, but I have been going to our healing services on Tuesdays most months. The problem is still there, worse then before.

Try as I may to keep the faith, God where are you when I suffer so? I do know your there with me. Thank goodness for faith, it has gotten me through alot of this that is going on.

Creams and lotions do not help, placing plastic gloves over my fingers too, when I cook. I worry about touching things out in the public, never know what you can pickup. I do not overly wash my hands (excessive compulsively), but do feel that it is important to keep them clean.

Neck pain, lower back pain, joint pain, swollen ankles, (Psoriasis or Eczema for fingers); usually named this because doctors really do not know what to call it or treat it. Can only take so much steriods and antibodotics (spelling) never can get this spelling right. Sciatic nerve is acting up in right leg, burning sensations in both legs in the upper thigh and hip areas no matter what I do, sleeping, walking, driving, sitting, standing, where is the relief

I went to pain management also , the doctor put into my spine shots into the nerve endings but that didn't help. He then suggested that maybe I should have the nerves in my back burned off then I would not feel anything. But hummm....that means if I hit my leg and not notice it could be worst then what I am going through now..

Just suffer, somedays wonder if it is worth it too. Depression is no fun. But I do not want to take pills to stop it. Drugging me will not be safe either. That is what doctors want, here take this pill for pain...not look for what is causing it I'm at wit end.

Coming here does help. I had a really bad weekend, I was like a manic, yelling at my husband acting like I was going to pop a blood vessel; hummmmm, he still thinks I am just emotional because of the moons placement, hormones, or just being b*****. :mad: :mad:

Thanks again for listening to me. Have a good week. Bye now Cheryl
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  #234 (permalink)  
Old 08-13-2002, 05:48 AM
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Thanks for the advice Lifestar, I do have an appointment with the family doctor for all my yearly work next week. Sometimes I feel like you are rushed thru and I forget to bring up something, so this time I made a list...ask about the itchy fingers!

How long is everyones doctor visits? 10 mins?

janet
  #235 (permalink)  
Old 08-13-2002, 06:17 AM
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Dr visits

I am so proud to say my Dr visits are sometimes 30 min or more, in the exam room with the Dr. But I know I have a very special Dr as I have been seeing him for almost 30 yrs.
This is so important to have a Dr that BELIVES in fibromyalgia. I know, since my retirement system (remember the wonderful Ohio School Employee Retirement System) has sent me to four Dr & only one of them believed fibro really exists.
So many Dr say it is in your head. I always say, yes my head hurts too, but even more after I see that Dr.
I hope all continue to visit this site. Say what you want when you want. That is what fellow fibros need to do, have a place where friends understand us
Take care & visit often!
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  #236 (permalink)  
Old 08-13-2002, 08:20 AM
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Dr. Visits

When I call to schedule an appointment with my wonderful doctor, there is usually only a 10 minute slot or so...but if there is something going on that I want to discuss with him, I TELL the SECRETARY on the phone, that I will need some extra time with him for a PERSONAL HEALTH matter, and could she book an extended apointment?

Sometimes the nurse will call me to find out what the problem is and I'll explain what is going on, and that I really ned to discuss things with the doc, and that I'm concerned that it will take extra time. I make it clear that I expect to have the time I'll need with the doctor on my appointment day. They usually appreciate that I let them know ahead of time, rather than clog up their schedule unexpectedly.

The visit gets billed as an extended office visit to the insurance company, but the co-pay for me is the same. This way the extra time is built into his schedule before I get there, and he isn't rushing out of the room for a back-log of waiting people.

Also a list is a great thing to bring to the doctor's office. You need to remember to mention so many things while you're there, and you do get off track, discussing so much with your doc.

When he/she asks "Is there anything else?" my mind goes numb...I need a check list to refer to, to remember if I've mentioned every little thing.



Cheryl...


As far as pain management...My friend has a morphine pump installed in her spine.

They also had told her about severing the nerves in her spine, and she didn't want to do that for the same reasons as you stated. ...so there was a doctor here in NYC ( but I'm sure there are other doctors in other parts of the country by now) who did a pain management technique, that was similar to installing an insulin pump that diabetics use.

It is a catheter in her epidural spine, with a resivoir of "Dura-morph" ( morphine specially made for the spinal canal ) implanted in her abdomen. The morphine is pumped into the spine in tiny increments and gives her a pain-block for her lower extremities, but she can still feel things, like pressure and weight. ... she just no longer feels these sharp excrusiating nerve pains she used to have all the time.

She goes to have the morphine resivoir filled up and checked every six months at the hospital.

The nice thing about having morphine directly into the spinal canal is that it blocks the pain signals, but can't cross over the spinal barrier and mix with your blood stream. So you don't get "stoned", resistant, or addicted to the morphine, but you get all it's pain-fighting effects.

If the steroid injections have failed for you you might want to look into it. I'll be talking to her tonight, and will get the doctor's name at Columbia Presbyterian Hospital who did her surgery. If you're interested you can start there for a referral.

I'm going on Thursday for my first steroid injections. I hope it brings some releif from my back pain. The stenosis and spasms have really been awful and have had me off my feet for weeks now. Even the simplest stretching exercises are so painful!

My poor kids have been stuck in all month and I just wish I could be my old fibro-ridden self! Maybe this was G-d's way of letting me know I really didn't have it so bad before? OK I got the message..I'm ready to be thankful!!


Bless you all.

Val
  #237 (permalink)  
Old 08-13-2002, 01:29 PM
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So much pain

Dear Ladies, I just read through all the posts and I feel so bad for all of you. Here is a gentle hug. I am not doing too bad at the moment, mainly just foot and hand cramps, exhaustion, and brain fogs. Like last night I was going to fry up some hamburger, turned the stove on, put the skillet on the burner, got the hamburger (it was spoiled so I threw it in the trash can and got another pkg of hamburger out of the freezer and threw it in the microwave to defrost. That was going to take 8 minutes, so I walked outside to sit next to my camp fire (that always relaxes me) and completely forgot about the skillet. Luckily my daughter came over and found the skillet before it caught fire. Today at work it took every brain cell not to make a mistake. I'm having to think real hard to write this.

Anyway I wanted to give all of you a gentle hug and a shoulder to cry on. I will hope and pray we have a better tomorrow.
  #238 (permalink)  
Old 08-14-2002, 03:26 AM
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Pinkie Winky MANY GENTLE HUGS TO ALL

Hi everyone! Well, I'm hurting too and couldn't sleep at all last night, even with my meds. But, I did sleep all day yesterday, so still got some good, deep sleep. It doesn't matter when I sleep as long as I can. I'm lucky I guess because I don't have anyone to prevent me from sleeping anytime. I do have to take Neurontin to help me sleep though. Before I started on it, I would only get about an hour or two each night and never got any good, deep sleep. Sleep helps you cope a little better and you aren't as cranky.

Stitcher, I feel so bad for you. I wish you many good days ahead. I know how you feel and that the world is just caving in on you. I have many of those "down" days and no one understands. Well, we all do here. We all have them and you can vent all you want. We do understand. It really helps to vent, so just go ahead. We are all here for each other. I have many days that I just want to die and get it over with, but then, I don't really want to die, I just don't want to be here. If that makes any sense?

Now, CairalBe -- When my mom had her heart attack and almost died, I spent many days at the hospital and my hands started breaking out and splitting and cracking, almost to the bleeding point and they hurt like crazy. I went to my doc and he said it was nerves!!! He gave me some Neurontin, which also helps the Fibro and sleep problems (most of the time). I did not have any topical ointment. Just the Neurontin and my hands cleared completely up within a few days. So, it is something you might try.

And, Lifestar -- you are right about taking a list to the doctor. I always have one and show it to her. She looks over it several times during the visit and covers everything on it. Otherwise, I will forget too. My doctor takes a little more time with me these days and we cover just about everything anyway. She sent me to a Pain Management doc and he has helped too with meds and a Tens Unit. I'm still having problems (of course, I always will), but he has helped me be able to cope better. He gave me a Steroid Pack (pills) to take instead of shots. I haven't taken those yet...I try to steer away from Steroids. Saving those for my "worse" day! I know I should have taken them right away, but as long as I can cope without them, I'm going to try not to take them. Has anyone taken the Steroid Pack?

As far as surgery goes! My problems started within 6 months of my hysterectomy in 1985. I wasn't diagnosed with Fibro until 1994 when I finally found a doc at Baylor in Dallas that understood and knew right away that it was Fibro. The one I have now also understands or seems to and the Pain Doc too. He's pretty cute too, but too young and married. Bummer!

Gotta go. Hope everyone has a pain free day! And, those of you getting rain, send it to us. We really need it. Take Care, Katy
  #239 (permalink)  
Old 08-15-2002, 09:16 AM
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racing heart

The racing heart is sure a side effect of fibro also chest pains. I have had the chest pains a few times & since I have a family history of heart trouble they do an EKG & blood work on me. You have to make sure it isn't hert trouble, but if you know you have fibro it is probably just another PAIN
Stay away from caffine as much as you can, chocolate is terrible, tea can be worse than coffee. You have to read labels.
I am now using a home traction unit as I have a neck injury from an accident I was in years ago. It hangs over the door with a bag of water for weight I sit there for 15 minutes twice a day. we are hoping this helps with my headaches also. My Dr prescribed it. I know I need to sit better, I am always slouching at the computer.
I know I take on too much, I am working on a few mission projects for our church now. But keeping busy is also good as it is better than sitting around feeling sorry for yourself
We are recoqnigzing Sept 11 as a Day Of Caring & running a food drive for the local Food Pantry. This is a positive way for people to remember that fateful day & help others at the same time.
Wishing everyone a peaceful day
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  #240 (permalink)  
Old 08-15-2002, 09:37 AM
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Sorry about my last poat. I was really haveing a BAD day. Still hurting quite badly but trying not to let myself be so down. Apending a lot of time in bed even though I don't sleep at least I can rest and it lets the othersin the house know that things are not good and not to expect me to do much that day. I've been reading a lot lately too. (Hard to do when it is hard to concentrate)

Thank you everyone for the kind words, support, encouragement, and those gentle hugs. I appreciate every little bit that was sent my way. I wish all those things for every one too.

Yesterday I needed to go get a b'day gift for my oldest dd so when I picked up my grd from art camp we went to the mall. I planned it to be a very quick shopping trip since I knew I would suffer for what I did. It ended up being such a fun afternoon. Grd and I went several places but the best part was her stopping every once in a while and looking at me "I love you Gamaw! You are the best Gamaw in the world." Then came a hug and kiss every time. This was even after I would say no to something she wanted. I really filled my resevour of good feelings. That has helped make today a better day too -even though i hurt just as bad as I did the other day. ;-) Love does make a difference.

Lifestar I would love to have all te things you mentioned happen. It would be so much fun if we could all get together and enjoy a day or two of pampering. Hmmmmmmm Wonder where we could go and met for this???? Any good ideas any one.

Do any of you have to stop and think about how to spell simple every day words. I just had to make 3 tries before I spelled any right. It happens many times when I am trying to write here or in an email - any time I am writing.

Have a good sonshinny, painfree day.

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A friend is one to whom one may pour out all the contents of one's heart, chaff and grain together, knowing that gentle hands will take and sift it, keep what is worth keeping and, with a breath of kindness, blow the rest away.
 
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