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Old 07-05-2007, 03:45 PM   #1
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Question Is this Fibro? Excruciating leg and foot pain?

I am wondering how many people here, who are dx'd with Fibromyalgia, have pain in their legs and feet?

I have a brother who was dx'd with Fibro, but his pain in confined to his shoulders.

I was dx'd with Fibro 18 years ago, but MOST of my worst pain is in the legs and feet. Does this sound typical of Fibro to you?

I experience pain everywhere - I call it my "Total Body Throb." Muscles, Joints, Soft tissue are all affected.

The second worse area of pain for me is the soft tissue - that is, anywere you touch my skin, on any part of my body/trunk/limbs/head, it feels as though it's been bruised. So, no matter where I am touched, even with only slight pressure (like getting poked in the arm to get my attention), it feels like pressing on a bruise. Walking is so painful because the bottoms of my feet feel this way, and so every step is agony.

I've had this for 18 years - it's always present, although when I went through menopause (and before I started on Hormone Replacement Therapy), I was not able to walk at all due to the pain being so bad I could put no weight on my feet at all. I also experienced severe muscle cramps and charlie horses when my estrogen dropped.

Does this sound typical of fibro? I keep talking to people who say they have fibro, but have not met anyone with the leg/foot and soft tissue pain. Could this be something else?

I'm getting to the end of my rope - I've tried everything, and nothing helps. All I ask is for the pain to be more tolerable, so that I can get back to work, and do housework once in awhile! Is that too much to ask?

Please help!

Ora

 
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Old 07-05-2007, 05:38 PM   #2
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Re: Is this Fibro? Excruciating leg and foot pain?

Yes, I Have Alot Of Foot And Hand Pn And Leg Pn.. I Work On My Feet All Day. 40 Hours A Week As A medical Assistant.. I Have Full Blown Fibromyalgia And Graves.{thyroid} I Hurt The Worst When I Wake Up In The Mornings. Very Stiff ,pain In Feet. Have To Use My Cane To Help Me Out Of Bed. I Also Get A Type Of Rls When I Over Do It In My Legs And Other Limbs..

Last edited by KAPPY123; 07-05-2007 at 05:39 PM. Reason: SPELLING

 
Old 07-06-2007, 08:55 AM   #3
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Re: Is this Fibro? Excruciating leg and foot pain?

Hi Ora:

I have extreme lower back and leg pain. My leg pain is a deep bone pain all the way down front and back of my legs. It's not as bad during the day, but at night I hurt soooooooooooooo bad--that's when I take my pain meds the most. I generally ache all over a lot, but my legs are my main pain complaint. Is this how yours is?

schao

 
Old 07-06-2007, 09:34 AM   #4
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Re: Is this Fibro? Excruciating leg and foot pain?

Hi Ora,
Yes, this is how I feel too. Sometimes feels like someone has smashed my feet with a sledgehammer, and the pain radiates up my calve and shin area. Sometimes is only an ache, other times excruciating. Worse at night thou. Most times it feels like I am walking on sharp gravel barefooted, or trying to walk on hot coals. I havent' been able to work for 3 years now because I can't stay on these painful feet more than just a few minutes at a time, and not at all when they are flaring. I feel for you... and good luck finding pain relief.

 
Old 07-07-2007, 12:15 PM   #5
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Re: Is this Fibro? Excruciating leg and foot pain?

Actually, Schao, the pain I experience sounds more like what Ishla has written. Like you, I do have deep bone pain, but it's the soft tissue pain that keeps me off my feet. Also like you, it is the leg/feet pain that I have trouble tolerating. My feet and legs feel like they are going to explode from intense pressure and pain. My skin feels like it is on fire, and no matter if I'm standing or sitting, it never abates. It is worse sometimes at night, when in bed, like restless leg syndrome (RLS).

My docs tested me for RLS, but they said I didn't have it. However, I still have to move my legs every few minutes because the pain builds up to a point where I have to move to relieve it. Moving my legs relieves the pain a little, and for a few seconds, I have relief, until the pain builds up all over again. Sometimes it feels like nerve pain. It also seems to get better if I gently rub it - almost like my brain can't handle both sensations at the same time - it's either the pain, or the soft touch, but not both!

KAPPY, I don't know how you do it. I worked for 4 years after all this started, but then my husband left me, I had to care for our 4 year-old alone, and I the additional stress made things SO much worse. I applied for disability and got it - thank God - but it is a fraction of what I used to make.

Ishla, it sounds like you and I have very similar experiences with our leg/foot pain. I have to sit down every few minutes, so it takes me hours to do the dishes if there are a lot of them (and, usually there are, since I can't do them every day). I started taking a narcotic, dilaudid, because I was taking such massive doses of NSAIDS that I became worried about my liver and kidneys. The dilauded helps a little bit, but nothing has given me significant relief.

I assume none of you have found significant relief with pain meds? I've tried every AD on the market, even newer ones like Cymbalta. I've tried Lyrica, Neurontin, and various pain meds. Nothing.

What about you?

Ora

Last edited by OraEtLabora; 07-07-2007 at 12:18 PM.

 
Old 07-07-2007, 10:56 PM   #6
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Re: Is this Fibro? Excruciating leg and foot pain?

i too am up tonight at 12:54 am because my feet are burning so bad from my fibro,and tingling too,i had a ice bag on the bottom of them a while ago,woke me up from a sound sleep,took a pain pill and a muscle relaxer,hopeing i will be able to go back to sleep.
the burning is the worst,it just plain hurts!

Last edited by cajunv; 07-07-2007 at 10:58 PM. Reason: correct spelling

 
Old 07-08-2007, 12:52 AM   #7
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Re: Is this Fibro? Excruciating leg and foot pain?

Quote:
Originally Posted by cajunv View Post
i too am up tonight at 12:54 am because my feet are burning so bad from my fibro,and tingling too,i had a ice bag on the bottom of them a while ago,woke me up from a sound sleep,took a pain pill and a muscle relaxer,hopeing i will be able to go back to sleep.
the burning is the worst,it just plain hurts!
Cajunv, I too am up because of burning feet and pain. I was dx with fibro many years ago along with NASH which is a nasty little thing that turns into cirrohsis of the liver without the drinking. Can you believe it, get cirrohsis and did not drink for years was never an alcoholic. I have been up since about 1 looking for anything that would relate fibro with the burning feet. What I do find helps me sooooo much. I keep coke bottles filled with water frozen. when the burning becomes unbearable, I get my bottle out and just put my feet on it and roll back and forth. Helps so much. About 20 minutes off and on and the burning will ease up enough to get some sleep. Hope this helps you if you try. And thank goodness I have found some one else with the same problem.

Last edited by Donnie49; 07-08-2007 at 12:54 AM. Reason: left out very important did NOT drink

 
Old 07-08-2007, 01:07 AM   #8
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Re: Is this Fibro? Excruciating leg and foot pain?

Ora, hope you also read the post for cajunv I just posted. And yes your symptoms are right with mine. I had a co-worker who use to poke me in the arm while talking to me. I ask her nicely please don't that hurts. Her reply was Oh that couldn't possibly hurt! then poked me again! She hasn't done it since I told her the very next time she poked me I would deck her. And I'm not a violent person but the horrid pain will cause you to do just about anything to keep from hurtin. lol I also have a problem with the rural doctors in my little one horse town. He seems to think like many doctors that have never treated fibro that it's all in my head. Luckily I was sent to rhumitoid specialist. Excuse the spelling, not my best subject. Heat helps me alot also on muscles. The feet burning, I use frozen water in coke bottles. That's the best I have found that works for me.

Last edited by HBMod07; 07-12-2007 at 06:59 PM. Reason: Please only quote the portion of the message you are responding to and not the entire message

 
Old 07-08-2007, 03:15 PM   #9
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Re: Is this Fibro? Excruciating leg and foot pain?

My legs hurt all the time but by the end of the day its other places..
I can relate to the bruise feeling. I can't stand for my husband to rub my back it hurts too bad.

 
Old 07-08-2007, 05:41 PM   #10
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Re: Is this Fibro? Excruciating leg and foot pain?

I also can relate to the burning and aching in the soles of my feet and up my legs - now it is also in my knees (aching only in knees). The feet problem started when I was on my feet a long time ( an unusual day when I was feeling pretty decent and also required to do so for an event). My feet were burning and I ignored it and kept walking around the house. Bad move........
The next day the pain spread up my legs and into my knees. These areas have never been the same since. Now I have pain in feet and knees with minimal time on feet. This always happens to any part of my body that I "overuse". It never goes away. I have full body FM - now disabled from it - especially bad in my back and face. Can't do any repetitive motion with hands or arms or legs, etc. Minimal walking, no chopping food, minimal typing, etc.
I agree - I allow no person to touch me as it aches immediately. Docs don't understand. Friends do now.
Best wishes
Rascal12

 
Old 07-08-2007, 07:42 PM   #11
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Re: Is this Fibro? Excruciating leg and foot pain?

Gosh, it's amazing how many on this board have the awful aching/burning/bruised feeling in the feet and legs! Sometimes I'll see those commercials on TV for PAD (peripheral artery disease), or poor circulation in the legs, which causes similar symptoms - and I wonder why we never see commercials on TV for those of us who suffer from Fibro leg/foot symptoms!

Maybe because they don't have a med for it?

Donnie, yes, the frozen water bottle has been my friend many times. It really is the only thing I've found that helps the burning, other than going barefoot a lot (I am disabled and don't leave my house but once a week, so I have gotten in the habit of going barefoot). The burning isn't nearly so bad, and is much worse when I have to go somewhere and have to put shoes on. In the summer, I wear only sandles. Are you able to try going barefoot? It might be just a coincidence, but it seems to work for me.

I almost always sit with my legs up, bc when they're down, the pressure builds up so badly in my feet that it's unbearable. But even with my legs up, I have to keep shifting them, because anywhere my skin touches the recliner, it burns and hurts. That pain builds up until it becomes unbearable, and I have to shift positions. Is this familiar to any of you?

And you all have the bruised feeling all over, too? Wow, that's a hard one to live with, too. Often, my skin will itch (dryness, narcotic pain meds, etc), and it's incredibly painful just to scratch the itches!! NO ONE I know understands what that is like - they just look at me like I'm nuts when I try to describe it. A friend bought me a little plastic hand back-scratcher, and even the most gentle rub with that over the itchy area is agonizing - sometimes, I would rather endure the itch bc the scratch is too painful!

When my fibro started, 18 years ago, it was mostly my feet and hands. They say that fibro isn't progressive, but by now, every square centimeter of my body and head are affected. It has spread to every part of my body - even my internal organs are tender to palpation. But I think if my feet stopped hurting, I could handle the other stuff.

Thanks so much, all of you, for sharing your stories. I wish I could help you.

Blessings,

Ora

 
Old 07-19-2007, 09:33 PM   #12
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Unhappy Re: Is this Fibro? Excruciating leg and foot pain?

Hi, I am new to this board and I have to say that in some way it's comforting to know that I am not alone. Everytime I go to my Rumie or family doc and complain about my feet hurting they say it's not from the fibro. They just keep looking for other things, like RA. I am taking darvacet for pain and doxepin to help me sleep, just recently added lexapro and more recently lyrica. I have had pancreatitis 4 times and have never drank alcohol, so they really don't want to give me many meds since that can contribute to pancreatitis itself. I have recently been diagnosed with diabetes, and my family doc thinks that is why I have foot pain but I don't believe it.

I have found that unlike some you, going barefoot makes the pain almost unbearable, so I have to wear some kind of shoe or house shoe then my feet get toooo hot. So I will try the frozen coke bottle.

My hands are hurting like crazy and they want to blame that on RA also, sure hope the day comes soon where they found some kind of medicine that helps this awful pain.

I'm wondering for all of you who have or are still taking lyrica if when you first started taking it that it made your fibro flare by 100% or more, or is it just coincidental. And also when you are having a bad flare up do you run a low grade temp?

 
Old 07-21-2007, 03:38 PM   #13
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Re: Is this Fibro? Excruciating leg and foot pain?

Ninnie,

People with low thyroid can have pain in their hands and feet - my mother did, and so did my sister. My sister, however, was dx'd with low thyroid within a year of her "fibro" - in addition to the pain in her hands and feet, she had the "total body throb." She was the lucky one, because within 3 months after she began treatment for her low thyroid, ALL of her pain went away.

I believe that for me, and my mom, and my sister, the pain in the feet and hands was from low thyroid - unfortunately for me and my mom, we were not dx'd with low thyroid until YEARS after the symptoms started. In my case, I went 15 years with the "total body throb," before the docs decided that my thyroid was bum. I was so hopeful the pain would resolve, but it didn't (it's been 4 years since I began thyroid treatment) - I still think it was from the low thyroid, but after 15 years of constant pain, with no treatment, it has become chronic. And chronic pain can be a disease in itself.

The reason I mention this is because if you haven't had your thyroid checked, and I mean NOT JUST the TSH, then please, visit the thyroid board and have it checked. At least have a Free T3, Free T4, and thyroid antibodies.

I took Lyrica for awhile, but it was SOOO expensive, and didn't help a bit, so I quit taking it. Took it about 6 months. Didn't notice any worsening of the fibro.

Blessings!

Ora

 
Old 07-21-2007, 06:02 PM   #14
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Re: Is this Fibro? Excruciating leg and foot pain?

I have also been diagnosed with Fibro. For many years my feet are burning , tingling and stabbing pains thru them. I explained to my doctor it felt as if i had broken bones throughout both feet. He ordered x-rays of both feet which ruled out no broken bones. My Rheumy said it sounded as Plantar Fasciitis. A Foot & Ankle doctor performed Ultra Sound on both feet which confirmed Plantar Fasciitis. To leave the house i have to wear custom molded orthosis in my shoes, still very painful to walk. Extra soft comfort slippers around the house, never barefoot. Darvocet for pain, Flexeral for muscle spasms in toes. Meds do not remove the pain, i fear of having injections in feet for i have macular degeneration and hear of the injections causing eye problems with long term use. I too was curious of how many people with fibro also have this terrible foot pain that shoots up into the legs. Soaking feet in Epsom salt is a relief at the time but strong pain when out of the water. Any ideas on relief, please post.

 
Old 07-21-2007, 07:48 PM   #15
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Re: Is this Fibro? Excruciating leg and foot pain?

I have awful pain in my legs and feet. and like you, i am on my feet all day also, working 12 hour shifts. it hurts to walk and my legs get very very tired easily! and too........when my 4 yr. old daugter and i play and she climbs on me and stands on my legs when i am sitting........OMG!!!! it's so painful....but i bear with it, as i know it's not her fault. although there has been a few times where i've had to tell her to stop, which broke my heart, casue then she cries. so i distract her with doing something else. I HATE IT!! i also have alot of pain all over.
Ninnie.......i used to love to go barefoot, hated wearing shoes! now......i have to wear shoes, cause it kills my feet and it is ubbearable to go barefoot.....waaaaa!

 
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