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cynthiad

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I'm self-employed and after 30 years of problems, now that I am on Medicare and don't have to worry about pre-existing conditions, I am going to doctors to finally try to find what is wrong with me.

After being to a rheumatologist, endocrinologist and they pretty much say probably fibromyalgia, I'm not a happy camper. I'm trying a different rheumy soon.

My dermatologist thought I had psoriatic arthritis due to severely peeling feet (bouts) and ridges on nails (all the time). But no labs or xrays support that. I have no to little psoriatic skin issues other than the peeling feet bouts that come and go and are accompanied by painful heels that are hot and red.

I've never known anyone with fibro, so I'm curious what is the type of pain? Or is it different for different people?

I definitely have fatigue and low stamina. My left hip hurts to walk. But most of my pain is there all the time, but I'm not fully aware of it until someone goes poking into my tissues.

I do know I'm hypermobile as commented on by a physical therapist and rheumatologist and have theorized that this condition puts a stress on surrounding areas. I can barely stand to be touched on the whole inner part of my legs and the joint where my arm goes into the shoulder. There is pain in my shoulders neck and back, but my neck and shoulders are so rock hard, you could take a sledge hammer to them.

So, it's not shooting pain and most of the time not even constant aching - except maybe when I exercise. Exercise is a constant challenge. I made the mistake after physical therapy last week of going grocery shopping for a 1/2 hour and I thought I was going to have a meltdown - my nerves felt on fire and I felt close to collapse. The little bit of PT and then walking in the grocery store was just too much for me. How sad. But, I'm not in a wheel chair, so there are things to be grateful for!

So I'm curious how others would describe their pain? Anyone have problems with easily overheating? Low body temp?
 

twiztc

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The tricky thing with this condition is there are varying symptoms for everyone. I think the reason for this is I don't know of anyone that has just Fibro. Everyone I know has accompanying conditions. I myself have Fibro, arthritis, hypermobility, hypothyroidism, depressive disorder, chronic fatigue syndrome, herniated disc.
Each one carries it's own set of symptoms, some of which happen to be smilar to Fibro, a few I am convinced attribute to the onset or at least acceleration of the condition, like hypermobility and thyroid problems.
As for the kinds of pain, I have many different kinds but which is because of the Fibro and which is because of something else?
Usually I put the tactile pains down to Fibro, those shingle tingles, the aching on the surface and when someone touches you, especially unexpectedly.
If my lower back is in pain then I guess it's my disc pinching again, if my hands or neck then arthritis etc etc but I'm only guessing.
The thing with Fibro is that it's a brain disorder, what to normal people would be a touch or a minor ache or pain to a Fibro sufferer feels excruciating, the brain blows the signals out of proportion (that's how my doc explained it recently)
Pain is tiring... the more pain in a day, the more it takes out of us
as for temperature I was convinced I was hitting menopause at thirty because of the flushes. As it happens it was due to my thyroid, it plays havoc with your internal thermostat. Now I've hit 45 I am in the pre menopause and my thermostat is completely buggered. I was told the Fibro makes it worse too, gee thanks. Even if I'm freezing cold I can't wear socks in bed coz it feels like they are on fire.
Geez. .this is turning into a novel so I will shut up and let someone else get a word in.
I Hope my ramblings have been of some use.
 

1sweed

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The burning pain can be caused by neuropathy. It can cause the buring feeling in feet but usually you get stabbing pricky feelings as well. Pain can be caused by many things and if you had a rheumatologist who thinks you have fibro, then your well on your way to a diagnosis. None of us were happy completely with the diagnosis, other than being happy we had one. Some doctors don't even believe the illness exists. And many who do don't have a great bedside manner.

You mentioned your seeing another rheumatologist, so were you not happy with the doctor or the diagnosis?

Fibro has so many different symptoms and problems, that it is hard to pinpoint what one person has, in relation to what another one has, so we can only help manage symptoms here by offering what we know from personal experience. Feel free to post questions around the forum and we will all try to help you cope. :)
 

cynthiad

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twiztc, interesting that you are hypothryoid but feet are not cold. My feet and hands are constantly cold in the evening during winter. Sometimes I sleep with gloves on and always socks. :) Depends on time of day as to whether hands and feet are freezing or not. In the winter, I never go without socks.

Yes, I believe pain is tiring and even if it's only a pain you are aware of when someone presses into the tissues, I believe it's still there wearing on your energy and stamina.

You mentioned hypermobility, which I also have. If my reading recall is correct, there is a difference between hypermobility and Ehlers Danlos Syndrome. Have you done any research on that? I know I have a lot of the symptoms of Ehlers Danlos and low thyroid.
 

cynthiad

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The burning pain can be caused by neuropathy. It can cause the burning feeling in feet but usually you get stabbing pricky feelings as well.

I'm familiar with the stabbing pain of neuropathy in my feet. I get that as well from time to time - usually at night. This is different. It's a soreness causing me to walk on the balls of my feet. Usually it is only one foot and lasts from 1-3 weeks. Except last year, one foot was almost healed when the other one kicked in and then the first one got worse again. Definitely was not a stabbing - just hurt to put any pressure on my heels, was red, hot to the touch and huge sheets of peeling skin.

You mentioned your seeing another rheumatologist, so were you not happy with the doctor or the diagnosis?
Not really happy with the doctor. He did not test fibromyalgia points, though I know some docs don't believe in them - and he did no range of motion testing. But, my podiatrist has fibro and the doc she goes to - she says he DOES test those points. I figured a doctor with fibro who recommends her doctor is a good bet.

Since a lot of my pain is not something I am normally aware of on a conscious level during normal activities, I just wondered about it - what I am aware of constantly during normal activities is the effort necessary to move the body. But if I start massaging my calves, the quad muscles in my legs, muscles inside my legs - ouch!

BTW, I thought this was an interesting read. The thing about the low thyroid - well, I've been talking thyroid problems since my 20s, but no one listens: http://www.netplaces.com/fibromyalgia/the-future-of-fibro/revolutionary-treatments.htm
 

1sweed

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Another idea came to mind when you said the pain in feet lasts up to three weeks or more, that is plantar fasciitus, inflamation in the feet. It can be caused by a number of reasons but can make your feet too painful to walk on. I had it most of last winter and spring. I was walking to much and I have weak legs and ankles, so I was over doing, plus I needed new shoes with better support. . Now I have a car to drive so far it has not come back.

Fungus conditions can cause foot problems with skin peeling. Maybe you should visit a foot doctor. Also people with diabetes have foot trouble and problems with temperature regulation in their bodies. I hope you figure out what's wrong and feel better soon. :)
 

cynthiad

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Another idea came to mind when you said the pain in feet lasts up to three weeks or more, that is plantar fasciitus, inflamation in the feet. It can be caused by a number of reasons but can make your feet too painful to walk on. I had it most of last winter and spring. I was walking to much and I have weak legs and ankles, so I was over doing, plus I needed new shoes with better support. . Now I have a car to drive so far it has not come back.

Fungus conditions can cause foot problems with skin peeling. Maybe you should visit a foot doctor. Also people with diabetes have foot trouble and problems with temperature regulation in their bodies. I hope you figure out what's wrong and feel better soon. :)
Yes, I did go to a foot doc. Actually 3 weeks is the most it's ever lasted. The foot doctor did not seem to know (different podiatrist than the one who has fibro herself). Can plantar fasciitis occur without overuse - because that would definitely not be a problem with me. And, does it come and go in bouts with no seeming cause. When it last happened, I had been very sedentary.

And I'm told I'm diabetic - though really not out the roof - fasting blood sugar 116 and 6.3 A1C. Good to know about diabetes causing thermal regulation problems. I know when it gets a little bit warm and I'm doing just minor walking, I break into a sweat and my face turns very red - and no, don't have high blood pressure.

We'll see what the new rheumatologist says. My GP pretty much says fibro.

Glad you got a car! :D
 

twiztc

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Cynthiad, the hot feet thing. Even though to me they feel hot they are usually cold to the touch as my hubby will attest to (lol) I too always had cold hands and feet to the point they always looked purple. Now they have my thyroid meds at the right level and it's not as bad as it used to be. Thank for that link. Very interesting articles.
 

SulaBlue

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Well, there's the pain in my keister from dealing with social security, doctors, and lawyers, but I don't think that's what you're talking abut >.<

I get all sorts of pain, but like others, I find it hard to tell where one condition stops and another starts. I have degenerative discs in my lower back and that ends up with muscle spasms/cramps and sciatic nerve pain going from my right hip down to my toes. Then there's just the all-over ache like I've rolled around in a cement mixer for a few hours. Then there's the less intense, but somehow more annoying, stiffness and aches in my hands and feet (arthritis, both OA and RA have been ruled out) that make me feel like my hands and feet are four sizes larger than they shuld be even though there's no swelling.
 

twiztc

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That's what I call boxing gloves hands! Mine are usually somewhat swollen but refuse to bend where they are supposed to and huge feeling and useless.
 

1sweed

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Yes, I believe it can. I would go to bed one night and wake up the next morning with it and be in a lot of pain. Planter fasciitis, is an annoying problem. There are stretching braces you can wear at night that can help fix the problem. It is a muscle that tightens and is very painful. Do a web search about it.

There is another condition called Raynad's syndrome. Web search for that one as well. Your fingers and toes, can feel like they are freezing and be painful, and turn blue, then the blood rushes back in and they get hot and painful feelings. I have had this one for years.

I learned about the tempature regulation thing in Florida, a friend is diabetic. Both her and her son have this problem. We used to freeze at Christmas dinner because they turned the air conditioner on and fans, to keep cool when the weather was in the 30's outside. We froze and they were to hot. Weird.

Hope this helps you. :)
 

cynthiad

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Cynthiad, the hot feet thing. Even though to me they feel hot they are usually cold to the touch as my hubby will attest to (lol) I too always had cold hands and feet to the point they always looked purple. Now they have my thyroid meds at the right level and it's not as bad as it used to be. Thank for that link. Very interesting articles.
Interesting about the thyroid meds. There are non-traditional docs who don't subscribe to blood tests for thyroid problems. I got my GP to agree to put me on a low dose of thyroid even though my thyroid tests seem ok. We'll see how that goes since I have tons of low thyroid symptoms.
 

cynthiad

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Well, there's the pain in my keister from dealing with social security, doctors, and lawyers, but I don't think that's what you're talking abut >.<
You are too funny! I like that!

I get all sorts of pain, but like others, I find it hard to tell where one condition stops and another starts. I have degenerative discs in my lower back and that ends up with muscle spasms/cramps and sciatic nerve pain going from my right hip down to my toes. Then there's just the all-over ache like I've rolled around in a cement mixer for a few hours. Then there's the less intense, but somehow more annoying, stiffness and aches in my hands and feet (arthritis, both OA and RA have been ruled out) that make me feel like my hands and feet are four sizes larger than they shuld be even though there's no swelling.
But is anyone just sore to the touch without constant aching? Like right now, I don't feel pain in my leg muscles. But if I were to start massaging into the muscle, yep, very sore.
 

SulaBlue

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Yes, I get that, too.

I've mentioned that I was completely started by the tender point test. I was having a fairly good day with no rea muscle pain the day the doctor did the tender point test. I went from having a decent day to breaking down into tears. I was expecting it to feel like he'd poked a bruise, which I can handle. Doesn't it seem like the minute you get a bruise you hit it over and over, after all? Well, he got to the one on my elbow and I jerked so hard it's a good thing he was standing where he was and not 6 more inches over, or I'd have caught him in the nose. And let's just say it was a good thing he was standing to the side when he touched the inside of my knee, or he'd be singing soprano!
 

Detoxing

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What kind of pain? Oh that's a real can of worms. I think every kind of pain best describes it. Nerve pain, muscle aches, inflammatory pain, gut rot, headaches of various kinds. Back pain, chest pain....stabbing and throbbing, thumping and dull. Tingling and numb. The pain around my neck and shoulders is amazing.....but that dragging exhaustion is what can really bring on the tears. It changes daily and is there all the time. Having no pain, which does happen occasionally is so weird now its become a conscious sensation in itself. There's also the weird itching and creeping sensation on the skin. Cold makes it worse. Warmth is such a relief.

I'm very interested in this term psoriatic arthritis....because my husband has a form of psoriasis on his feet. Like individual spots that peel. As you say its not there all the time, but he is now getting fibro type symptoms too, which is scary as I'm the fibro/cfs suffer and can't work. I'll be googling the connection x
 
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