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darkchocolate

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At times like this is when I don't think I have fibromyalgia. I was visiting with someone at their house and my feet couldn't touch the floor in the chair I was sitting in. My feet started burning, then my legs starting burning and aching. I was fine before I got there. I have told the doctors time after time that my problems seem positional. If I stand in one spot my feet start burning. Yet my MRI's are normal. I had a cervical and lower lumbar MRI (without contrast). The only thing the Lower Lumbar MRI showed was mild arthritis. The lady I was visiting with said that sounds like a nerve to me. At times that is what I think as well.

Am I crazy or just in denial that it could be fibromyalgia?
 

Forgetmenot

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Fibro is different for everyone.some ppl feel aches like the flu. Some have burning like u do. Some have little pain but are so tired they can barely make it throughout the day.some pp, just have pain.it can and does change , from one part of the body to another. But most of us have what I call our everyday pain.which never goes. Mine is flu like feeling and sore skin. Some ppl might have painful feet .everyday.
That how we no when we are flaring. We start to get more pains on top. Don't worry to much about what your reading. It's all guild lines .
When I first had Fibro I didn't have pain for well over a year. But I couldn't stay awake. Now I have pain all the time.and I have bouts of tiredness which make even going up the stairs hard work.
But do what DK told u and write a dairy every day.
 

darkchocolate

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Thank you forgetmenot, I appreciate your response. I have started a journal and I will keep making daily notes.

When you talk about flu like feeling, does it feel like the true flu when you have the flu virus with a fever? I can understand feeling achy but I can't imagine feeling like I have the "flu" all the time. That must be awful.
 

diamond

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Its me again darkchocolate...i know its hard to get your head round but most of my pain is burning pain that includes deep aching. It seems impossible not to think there must be a physical cause...also often moving is easier than standing or sitting still as the stillness intensifies the pain. That's why those of us who get pain at night just can't get out of pain because just laying there causes pain.

My family can't get it after 8 years as most people in pain from injury etc if you rest it the pain subsides.

I went through mri scans ultra sounds as i was convinced something was injured (i had fallen off a step and landed hard on concrete and broken my foot just prior to full blown fibro).

Once you have ruled all the other things out you should be able to get some relief with medication when the pain gets bad.
 

darkchocolate

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Thank you, willow, again for your patience with me. Your burning and deep aching sound a lot like me. I have also fallen, more than once. I am only on Lyrica right now and it takes the edge of the burning sensations. I am so concerned about side effects of medications (short term and long term). I took ibuprophen for the first time today in probably over 7 months. I really don't like taking medicine.

I asked the doctor if he had the right MRI after he said he couldn't believe how normal it was (except for mild arthritis) after hearing me describe my symptoms. The pain management doctor had the MRI study but wanted to look at the MRI after hearing me explain how I felt. I received 1 epidural injection, but it didn't help.

Do you mind me asking what medications your taking?

Thank you again for taking the time to reply to my post.
 

diamond

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I take cocodamol 30/500 (codeine and paracetamol) but for years took nothing even though probably i needed some pain relief sometimes i preferred to listen to my body and pace myself to avoid what i call unbearable pain rather than expect to be pain free...i kind of got used to general achy pain if that makes sense and tried not to let it frighten me.

I had to give in a while ago to pain meds but already they are not as effective as we build a tolerance to opiate based meds quite quickly.

I don't have a wide experience of trying different medications as i am very sensitive to side affects and my mind doesn't cope well with putting drugs in my body. Having said that you can reach the point where that instinct goes out the window as you are so desperate for relief.

Epidural i think are for injuries and inflammation ....but we don't have pain for those reasons...our brains process pain signals all wrong back and forth to and from our muscles tendons ligaments and nerves and our muscles don't produce energy or repair like a normal persons.

I have a good book by Claudia Craig Marek....The first year FIBROMYALGIA packed with information and help.

Maybe you would find it very helpful. You can buy it on Amazon or download it i think for about $12

Take care
 
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darkchocolate

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willow, thank you again for answering my questions. I haven't had prescription pain medicine in over 15 years. Then I had oral surgery (gum graft) and the first day or two I did ok, but my husband was home to take care of the girls. After that I had to function and the oral surgeon tried two more pain medicines, then finally just said I will have to deal with Motrin 800mg. Thankfully since then I haven't needed anything stronger than a Tylenol or Motrin/Advil.

How long have you been on cocodamol 30/500 (codeine and paracetamol)? Just wondering because of the tolerance level your referred to.

I am used to the achy and burning pains, not that it means I want to live this way the rest of my life. After reading so many stories that will be a breeze compared to so many who suffer much more severely.

Just out of curiosity, what time was it when you posted about the medicines you take in the UK?

Thank you again and I truly wish for you a day of well being.
 

diamond

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Hi darkchocolate it was about 8.30 am...our clocks changed an hour backwards last night but not 4.24 am...i think this site must be set with US time displays!

I have only been on cocodamol for 3 months before that i had codydramol 10/500 for about a 18 months. The cocodamol still do something but i am trying to limit my intake to 2 tablets twice a day as they give me a very dry mouth and constipation...sorry!

I can take 8 in 24 hours but am reluctant but might have to give in. The pain is relentless at the moment.

I am interested in your gum graft...i have receeding gums maybe through overbrushing and unexplained bone loss with no bad gum disease visible.

What is a gum graft like and was it for similar reasons?

Wishing you too a better Sunday with your family.
 

darkchocolate

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Good morning willow! It is 7:52 am as I type this. I am surprised it is morning there as well.

I think my gums receeded from over brushing. I had two surgeries and could probably have another one but the sensitivity isn't bad, I just have receeding gums.

The first surgery wasn't too bad, the second surgery was more painful (recovery period). The second surgery also had a bigger gum graft, so that is probably why the recovery was worse. The surgeon took skin from the roof of my mouth to cover the receeding gum area. I was put to sleep in the oral surgeon's office, so the procedure was a breeze. It's the healing process that hurts. Of course, eating is more difficult and irritates the gums and roof of the mouth where the skin was taken from. If you have any other questions, please ask.

Don't worry about mentioning the side effects, that doesn't bother me. I would rather know. I mainly asked about the medicines because I was wondering how long you got relief before the pain medicine wasn't as effective.
 

darkchocolate

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willow, I forgot to thank you for the book recommendation.
 

diamond

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dark chocolate...acetaminophen is paracetamol...i looked it up. On its own it is totally ineffective for me.

Yes it really is a good comprehensive book by a lady who has fibro and i think works in medicine, It covers just about every symptom in detail.....self help, just about every medication, how to cope with your emotions....impact upon and how to explain to family....reducing stress, exercise.

It helped me as at the beginning i knew nothing about fibro.

I wish i was brave enough for a gum graft but i don't feel up to it at the moment

Ha Ha you have to laugh...I tried to take such good care of my teeth to avoid needing dental treatment that would be invasive and instead i have brushed my gums away.

it's 4pm now here now and the post time is almost 10.00am not your time either so not sure what governs the post time.
 
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