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Old 07-23-2004, 09:48 PM   #1
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Michael Kirk HB User
Red face New Member....question

Hello to all........

I am one of the statistically unlucky males to have this condition.

It first showed itself as an annoying "ache" which was bilateral over the tendons in my biceps and in my feet ; the discomfort was like an empty throb which felt better with pressure on these areas.

In the last few years it has progressed and reached a point where I have constant pain which mimics a knee disorder like a torn cartilage or ligament with constant pain on the inner part of my leg around the knee.

Recently, it has worsened again with the most disturbing array of sensations.
When I'm lying in bed and start to rise I get a pulling sensation on the outer part of my upper thighs as if I've just pulled something which knocks me right back; after 2-3 attempts and standing I get a paradoxical numbness along an entire "line from the outer upper thigh extending about 6 "; along with the numbness I get a disturbing itchy skin sensitivity over the area. I also find I get this on both legs, though recently it is worse on the left.

At first I thought it was sciatic in nature, but it follows no proper distribution of pain...it is in the midline of my upper thigh and is extremely uncomfortable.

I have read descriptions of "creepy crawlies" in this board....is that what this is?

Please help before my hypochondria convinces me I have deep vein thrombosis or worse.

Thank you and hello.

 
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Old 07-24-2004, 05:08 AM   #2
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pa235 HB Userpa235 HB Userpa235 HB Userpa235 HB Userpa235 HB User
Re: New Member....question

Hi MIchael,
Welcome to our group. Those creepy crawlies are sensations that we get in different parts of our bodies, feels like bugs crawling on you. we get harp shooting pains that only last a few seconds, at least I do, I call them lightning bolts, numbness, tingling, you name it.

Are your legs the only area you have pain? I get burning pain down the outside of my right leg ansd numbness in my foot, but my low back and hip are full of trigger points right now.I get knee pain, but it is like a half moon aroud the knee cap, I have to be careful walking when I have this,it feels like my knee jumps and I almost have fallen several times. we all seem to have a area that is worse than others, but get all over body pain.

Again welcome, I know you will get other replies and I am sure someone else can attest to having the same problem you do. Linda
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pa235

Fibromyalgia
Myofascal pain syndrome
Costochondritis
Arthritis, cervical and thorastic

 
Old 07-24-2004, 09:33 AM   #3
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Michael Kirk HB User
Re: New Member....question

Dear Linda, thank you for your courteous reply and welcome .

Yes, from the reading I've done in 24 hours on this Board I note that though there are , of course, many similarities in painful areas, their exact distribution person to person is as varied as fingerprints.

My legs are the biggest complaint from a pain standpoint , but have syptoms in my arms, hands and low back as well.

I used to have fatigue problems as well, but Wellbutrin SR has helped push up my energy level, though at the price of some edginess at times. I live on a permanent use of Ambien to sleep.

I will also use this post as a platform to vent about the "Dark Age " medicine that is practiced for this complex condition; without a truly scientific approach or research for this condition, the "antidotes" read as laughably as we would look at "Doc Foster's Elixir of Life" out of some 1870's Western newspaper.

One has merely to look at this Board to see everything from Calcium to Guaifenesin to secret ionized bracelets ( do they come with a decoder ring ? ) touted as "THE" Cure. Very upsetting indeed.

How about a real pharmaceutical backed research looking for a cure to the condition, rather than ad hoc approach to alleviating SYMPTOMS. Treat the disease, not the symptom.

On an aside, I have a personal dislike of the so-called "Guai protocol" which is as good an example of Dark Age unenlightenment as you can point to....it is the modern day equivalent of "blood-letting" where the "cure" is worse than the condition.

I look forward to actively posting and being an activist for real research to cure us all.

God Bless all in pain.

Michael

 
Old 07-24-2004, 11:27 AM   #4
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countrygal HB User
Re: New Member....question

Welcome Michael, I am sorta new to the FM board. I am still waiting on my Dx from the Rheumy. How long did it take you to get a DX? Have you been experiencing your problems for a time? I have read alot on the net, but have found some conflicting treatments from Dr. to Dr. So I come here for REAL peoples experiences and help. Hope you can find your answers here too...

 
Old 07-24-2004, 11:42 AM   #5
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mollymadison HB User
Re: New Member....question

Hi Michael! Welcome to the board. You will certainly find the support you need here. I know I did. I don't know if you have already done this but, the website for the mayoclinic is a very useful site for FM and CFS. It helped me alot in the beginning. I share your frustrations with Dr's. They are just treating the symptoms. However, as long as I'm not in pain, I can live with the treatment. Another however, my Dr expects me to live on one vicodin a day for my extreme pain in my legs and my feet. The feet is where mine started. Then it moved to my legs. I have other problems as well. The fibro fog is really getting to me right now.

Look forward to reading your posts.

Hey Paparoux, you have a partener now! Yippee!

 
Old 07-24-2004, 01:39 PM   #6
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Copper HB User
Re: New Member....question

Hi Michael, and welcome aboard!

Your posts sound like you've been doing alot of research on this disorder. That is a good thing, as education is one of the best tools we have! Also, fear not, there are other men on this board. I expect Paparoux will be making himself known to you anytime now.

It is unfortunate, but treatments are as varied as, you say, fingerprints. This may be one of the issues that truly baffles the medical community. When treatments work for only a short while, or work for some and not for others, I imagine that this makes it much more difficult to develop a protocol that works for everyone. I'm fortunate to live in an area where dr's take this illness seriously, and use the best that medicine now has to offer, but also are willing to explore alternative therapies.

Anyway, seems like today I could just go on and on, but I'll spare you from my chatterfingeredness (good word, huh? ), and close for now. Welcome to the board, once again, and I'll look forward to reading your posts.

 
Old 07-24-2004, 03:34 PM   #7
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kovena HB User
Thumbs up Re: New Member....question

Hello Michael, as the others say "Welcome Aboard"! Although I am sure you wish you could have missed this train!
My symptoms(like a lot of the other peoples) are so diverse and extend to all parts of my body. Along with other things like IBS and CFS and Arthritis the symptoms can change from day to day, except for the one constant pain. The PAIN . when Its bad, its REALLY bad when its worse, I am crippled.
I am on Morphine for the pain, but the DOC does not seem to realize that I need a steady regular dose, not just a few for when the pain gets bad....It is BAD ALL THE TIME! The MS Contin (Morphine Sulphate xtended release) works very well, for about 4 hours, then I get to where I can barely walk again and I am supossed to have the MSIR (Morhpine Sulphate Instant Release) for that pain called Breakthrough. The trouble is like many of the Docs that people here have, they do not seem to realize we need that MSIR ALL the time, not just once a day, every few days...the pain is back after 4 hours on a pill supposed to last 6 hours EVERY DAY. So we all live in constant pain trying to make do with much less than we need for break through pain and some have to make do with less for the main pain to begin with. It is as if the MDs do not understand that the pain we have is constant. It does not come and go, nor does it go away all the way even with pain meds. It is relieved enough to be able to feel human and get around a bit but it NEVER goes away completely.
I am just as interested as you are to find a cure rather than treatment for the symptoms, but there is none at this time and I am crippled with pain without the meds. So it is a Rock and a hard place day by day, every day.
Sheesh....having to choose when I would like the pain to be relieved and when I won't mind it crippling me. The frustration and pain gets so extreem that I sit and cry from it. I am having what is called a 'Bad " day. No breakthrough meds for a few days now and I am ready to scream, I don't get to see MD until the 29th so I can't do anything about it.

Well...don't let me scare you, as I sure get scared myself at the powerlessness over the pain. There are a Lot of Great People on this board who will try to help you as much as they can. All you have to do is ask and someone may know an answer for you! Well, back to bed for me!

"Above All Do No HArm"...Love and Healing Light to All...kovena

 
Old 07-24-2004, 06:26 PM   #8
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Michael Kirk HB User
Re: New Member....question

Thank you all so much for your support and encouragement...it is really quite helpful and reassuring to know you are not alone; however, I would gladly forego all your pain rather than have the company as this is a condition I wouldn't wish anyone to share.

Today was a very bad day, the worst I have ever experienced.

Despite my WEllbutrin, I had absolutely no energy , but I took my wife and two year old to the Mall and could barely find the energy to make it back to the car after 4 hours in the mall; also, I alternately felt lightheaded and had pressure in my chest. I guess you could say I felt like I had the flu, with no flu.

I live in NYC which has had an especially moist and humid couple of weeks with lots of rain; I do not know if this was a a specific trigger, but my overall pain and distress has risen dramatically over the past three weeks.

I do not take any pain medication other than advil as I have long feared the cycle of dependency this might lead to, but after today I don't know.....

I will look to all of you for the strength I lack and the knowledge I am missing and hope that this year, through concerted efforts, we can find a lasting respite from our pain.

Your responses have meant a lot to me today.

Thanks and God Bless you all,

Michael

 
Old 07-26-2004, 05:32 PM   #9
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Michael Kirk HB User
Re: New Member....question

Went to the doc today regarding the upper thigh pain and numbness on the outer side of my legs.

He thought it was "neural compression" and unrelated to the FM.

Just wanted to update.

 
Old 07-27-2004, 05:35 AM   #10
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DecLady HB User
Welcome to the board...

Like you, I wish this wasn't a place you were compelled to find! But, here we all are. The leg pain you are having could be neural compression..but , and here seems to be the kicker...it could be fibro too! or instead of! I think that is part of what baffles most doctors..they want to put a box around this and have it make sense...but it doesn't. I am dx'd for almost 2 years now...my GP did the initial dx and then two months ago sent me to a rheumatologist. I think I was sent because someone eating vicoden every day is "wrong" for a GP. Well, I got lucky, the rheumy did a very thourough exam..and listened and asked a lot of questions..after over an hour, he said that he concurred with the dx...that he thought I was well educated about the illness..and his recommendation was that vicoden on a daily basis...taken with some wisdom of course...was way less damaging that most of the OTC pain killers that people take without thinking. So, he said to keep doing what I was doing...trying to move...trying to eat a healthy diet...and taking the pain meds as I need them. So, just an interesting side note to all that..the next time I got my vicoden scrip refilled...instead of the usual 30 with no refill...I got 120! theoretically a months worth according to the scrip! I was happy to see that the rheumy''s recommendation was listened to! I have pain every day..on a good day, I do ok with one vicoden...but on a high pain day...it is not uncommon for me to "live" on the things! This is a tough illness...and I would think that it is tougher for men! As for you, you probably need to scale back..4 hours in the mall will put most of us in a flare...the llights, and the amount of info you have to process while shopping is just too much for most of us...at this point I usually can only do about one hour tops in a store...and I am a mother of 3 grown children...I have spent HOURS shopping in the past! LOL So, take it easier on yourself...don't push yourself too hard...This is a supportive group...I don't always agree with everyone and the paths they choose...but I always respect their right to choose...and with a crazy illness like this...I understand how you would try most things to feel better! I wish you less pain...and I hope that you can find things that work for you!

 
Old 07-27-2004, 10:19 AM   #11
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aaronon HB User
Re: New Member....question

Welcome to our world, Michael!

This is a place we're sure you don't want to be. Unfortunately, I too, take just advil for pain. There are days, tho, that I crave something so much stronger, to take for this hell I live in. My fibromyalgia is out of control right now, not real sure where it's going or what I'm going to do about it. Since I don't see a doctor for it, that is.

I also do research via the internet, library etc. It's important to know what it is that's ruining you and why.

Gina

 
Old 07-27-2004, 12:09 PM   #12
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taurus3 HB User
Re: New Member....question

Welcome Michael,

I'm sorry to hear about what a rough time you are having but you've come to the rigth place for support. It's made such a difference in my life and management of my illness. I replied to your FMS Library posts and pulled forward some old posts that have a Med List and Supplement list for you and the others. I hope it is helpful for you.

I too have the numbness in my right leg that you describe. It's so crazy and annoying. In my case it started after a bad epidural. It went away for awhile this year but it's back again. The only thing that seems to make it "wake up" is by bending my leg so if I'm standing I have to prop my foot up on something.

If it's not related to fibro it's awfully suspicious that so many of us have it. But I'm not a doctor, what do I know, lol.

There is another post a few pages back called The List that you might find helpful. It has a list of all the symptoms associated with fibro.

When Paparoux comes back you two can do some male bonding. We're all hoping he's Ok because it's been awhile since he posted which isn't like him.

May your day be pain free - Andy

 
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