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To Sharon and Kathy

Posted by Pam S. on 6/12/03 at 23:25 (121723)

There is quite a bit I want to say but I do not have alot of time tonight. I know you are both struggling right now and I so understand your pain.

With my fibro, I have had so much pain. When this whole thing started I thought most certainly I had carpal tunnel. I could not take the milk out of the fridge or drive a car I was so weak. I was 45 then. My arms, mostly my left, hurt so much. My legs tingled and burned. I slept in that wrist splint until I finally got into see THE hand/arm specialist who spent two minutes with me and told me no way did I have carpal tunnel. I never had the EMG of my arms...went right for the MRI of my brain soon after that because I had so many headaches too. About a year later, the whole foot thing started. I remember thinking I could not wait to have the surgery on my foot so I could be put to sleep and feel no pain for a while...SAD

I called 911 once and had them take me to the emergency room because since all my tests were negative (and that one dr. said I had the rich, white woman's disease) I just was so desparate for help but of course I got no help in an emergency room.....

Why am I saying all this? Well, most of my arm and hand pain just went away after about a year or so. Or, maybe because I went on the meds I am on. I will never understand the reason WHY I had all these wierd symptoms. My strength got better over time (with physical therapy) Maybe my feet will get better too...I am happy to be over the fatigue part.

I just wondered what your symptoms are, Kathy. Are you just recently diagnosed with fibro? Sharon, I also had tremors in my legs with the fibro. I think taking magnesium over time helped that.

Gotta run, My daughter just got home from SCU. Her mono is so much better now. Warmly, pam

Re: To Pam

Kathy G on 6/13/03 at 11:10 (121756)

First of all, I'm so glad your daughter is home and feeling better. They can get so sick from Mono, it's very scary. Thank goodness most of them bounce back so fast!

My symptoms are embarrassing to list. Let's just say that I have chronic muscle spasms in my whole body and have had since my teens. I have Irritable Bowl Syndrome, Migraines, Raynauds Syndrome, Acid Reflux, chronic allergic rhinitis. I have PF and osteoarthritis. I have a neuroma. Oh and I have hypertension and high cholesterol. Other than that, I am a walking picture of health! To sum it up, I am a pain in the neck! But I've always had a great deal of energy and although I'm now far more limited physically than ever before, I don't feel as though I've had to miss much in life.

I've reached the point where it's embarrassing to list my stupid conditions. My Pod pointed out to me that I really needed to do that when I went to the Rheumatologist. He said that many of my conditions have just come out in conversation over the eight years I've been going to him. He said I needed to make a detailed list when I went to the Rheumy because otherwise I wasn't giving him a fair shot at diagnosing me. He reminded me that the one time it's all right to complain is when I go to the doctor.

I just hate having all these things wrong with me. Overall, I'm really a healthy person. I just have all these nagging problems. My chiropractor calls me the queen of inflammation and my PCP calls me an orthopedic nightmare! It doesn't get me down because I suffer from what my sisters call the Pollyanna syndrome. I drive them crazy! But I think I was blessed me with this way of looking at things for a reason.

If I had thought I'd be living this kind of life at 53, I'd never have believed it. On the other hand, thank goodness that I don't need to work outside the home and that my husband has provided us with a good life. I can do puzzles, read, crochet when my hands let me, listen to my music or the radio and I talk to my sister and daughter almost every day. I have some friends but most of them still work. All in all, it's not a bad life. I just worry that I'll become a boring person because I don't get all the outside stimulation I used to. I do have some groups I belong to and that helps.

And, of course, I have hope that I will get better! So, that's me in a nutshell! :D

Re: To Pam

Sharon W on 6/13/03 at 11:28 (121758)

Pam,

You wrote:

'With my fibro, I have had so much pain. When this whole thing started I thought most certainly I had carpal tunnel. I could not take the milk out of the fridge or drive a car I was so weak.'

My weakness has never quite reached that point, I just have trouble opening jars sometimes (especially pill bottles!) or problems with fine motor coordination that make it very hard to write longhand, or sometimes even to tie my shoes. I don't know why, but the Neurontin seems to help with all of that -- not just with the pain. It's very weird.

I don't THINK my problem is fibro -- it is peripheral neuropathy that I've been diagnosed with (3 times). Also two doctors have said they think I might have carpal tunnel, and two have said I might have ulnar nerve entrapment in my elbow (although those nerve conduction tests on my hand came out normal last Feb).

I know a couple of people with fibro (one of them my husband's sister) who talk about having the level of weakness that makes them unable to drive a car sometimes. What you went through sounds like a nightmare!

'I was 45 then. My arms, mostly my left, hurt so much. My legs tingled and burned. I slept in that wrist splint until I finally got into see THE hand/arm specialist who spent two minutes with me and told me no way did I have carpal tunnel.'

I too have tingling and burning in my legs, especially in my arches and the lateral plantar areas of my feet. My hands rarely burn or even tingle, unless I'm driving -- there seems to be something about the vibration of rhe car that really gets to my hands! I have learned to take Tylenol first, before driving anywhere that will take more than half an hour.

I wish there were a hand/arm specialist around here that I could go to. There isn't even a physiatrist on my health care plan!

'I never had the EMG of my arms...went right for the MRI of my brain soon after that because I had so many headaches too. About a year later, the whole foot thing started. I remember thinking I could not wait to have the surgery on my foot so I could be put to sleep and feel no pain for a while...SAD'

VERY sad! But I remember times, when my TTS was at its worst, that the pain had me with tears running down my face, lying on my bed with my leg twitching from the shooting pains jolting me every few minutes, and when that happened I would have amputation fantasies... It seems crazy to ever have fantasized about that, but pain causes people to do some crazy things when it's intense enough.

'I called 911 once and had them take me to the emergency room because since all my tests were negative (and that one dr. said I had the rich, white woman's disease) I just was so desparate for help but of course I got no help in an emergency room.....'

No, you wouldn't have. I remember Tammie describing her hideous experience when she went to the ER for an extreme attack of her (already diagnosed) RSD. They didn't believe a word she told them, and of course they refused to do anything for her pain, until she literally COLLAPSED in their examining room... Even after that, she wasn't treated very well, but at least they didn't (quite) continue to insist that nothing was wrong with her.

'Why am I saying all this? Well, most of my arm and hand pain just went away after about a year or so. Or, maybe because I went on the meds I am on. I will never understand the reason WHY I had all these wierd symptoms. My strength got better over time (with physical therapy) Maybe my feet will get better too...I am happy to be over the fatigue part.'

'...Sharon, I also had tremors in my legs with the fibro. I think taking magnesium over time helped that.'

The problem in my thighs is transient weakness; I usually don't have tremors. I read the article that was posted once on these boards, about the importance of magnesium supplementation for people with fibro. (It went into a very technical explanation of why fibro patients need more magnesium, but I don't pretend to be able to understand all of that biochemistry, etc.) Anyway, while it might not be enough for someone with fibro, I do take a calcium with magnesium supplement every day. I haven't really noticed any change since I started taking it, though.

'Gotta run, My daughter just got home from SCU. Her mono is so much better now. Warmly, pam'

I'm so glad to hear that your daughter is feeling much better!! Is she getting her energy back really quickly? (Ah, to enjoy the miraculous resiliance of youth again...)

Sharon
:)

Re: Some thoughts to ponder

Pam S. on 6/13/03 at 22:44 (121824)

You know how sometimes people say things that really are meaningful... Today I went to see that Myofascial therapist (see my post where I TRY to explain what they do) and these are some things she said.

Rarely can anyone really explain WHY you have this and that pain. She told me so nicely and gently to not OVERTHINK things about my body pain.
What we all have gone through and are experiencing is just part of the whole journey of life. (I worry and overthink and am a type A) she must have picked up on that.

WHAT HAVE WE LEARNED ON THIS JOURNEY.......Just think about that to yourself. I have thought about it all day. I have really learned alot and I know you all have too.

LISTEN TO YOUR BODY Sometimes pain can be your friend. We all need to slow down. That was one of the THINGS i learned (way the hard way...)

Stress can cause these restrictions she is trying to release in my connective tissue. (Boy, do I have crappy connective tissue. (She did not say this)

To Sharon: Where do you live? Does anyone do any type of massage in your area? What about a PT?

To Kathy: WE have so much in common. I also think I am totally boring now. I just hope my husband does not think so. I always feel guilty I am not doing enough.Let's try to let it all go. Starting now..... What do you think? I hope this all makes sense... there I go again
Thinking warm and optimistic and grateful to be alive and my daughter is doing great thoughts pam

Re: Pam

wendyn on 6/13/03 at 23:41 (121830)

Good points Pam.

I am a type A+ as well, but since my foot problems, I'm more of an A-.

I can't walk so fast - so I just have to go slower. I notice more, I'm more relaxed.

I've been biking a lot, and I love it. If I hadn't toasted my feet, I don't think I would have ever discovered mountain biking.

This whole thing has also made me way more compassionate to people who have chronic pain and/or disabilities.

Re: Pam

john h on 6/14/03 at 08:53 (121848)

Wendy I am a type 'Incomplete'.