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TwoDimes

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Sep 21, 2013
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6
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DX FIBRO
Diagnosis
08/2004
Country
USA
State
KS
Three times now I have been diagnosed as having Fibromyalgia. I, for a specific reason, just cannot accept that all that is going on for me is strictly Fibromyalgia.

I do have most of the symptoms for Fibromyalgia and none for Chronic Fatigue.

I, though, also have had severe/excruciating lower back pain since about 2007. I even had a bilateral sacroiliac joint fusion. I have had severe/excruciating lower back pain ever since.

I, recently, has an x-ray taken of my lower back. It was taken and analyzed by a neuro-chiropractor. She informed me and showed me that I have "bone on bone" in my L-4 disc. Now this is strange as no c-scan or MRI has shown this. She has advised that I consider getting a Radio Frequency Ablation (burning of the nerves). I am working on setting up an appointment to see a pain management specialist to learn if he/she will advise the same.

Now, considering that no other imaging has detected this, I want to know if anyone is greatly handicapped due to having non-stop burning and stinging in their lower back, stabbing pain, tingling and stinging in one leg, loss of balance and coordination, stumbling when walking, inability to sit of stand for long periods of time. I want to know if people attribute these symptoms strictly to having Fibromyalgia.

I want to know if people have had these symptoms that got progressively worse over time.

Your feedback would be greatly appreciated. Thank you for reading!

TWO DIMES
 

diamond

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Joined
Sep 18, 2015
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1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
i have lower back pain just as you describe burning stinging pain stabbing pain and in both legs knees and feet. I find it hard to sit or stand in comfort and rely on hot water bottles all day and night in my back and elsewhere.

i cant say i have loss of balance but i drop things burn myself on hot plates.

My symptoms have got much worse in the last 18 months but that doesn't happen to everyone. Many people are up and down hourly or daily and have good days and bad depending on sleep activity or just the nature of fibro which means you can wake up with pain anywhere.

I must add that i have never had an xray or scan and have assumed mine is fibro.
 

TwoDimes

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Joined
Sep 21, 2013
Messages
6
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DX FIBRO
Diagnosis
08/2004
Country
USA
State
KS
Willow, I thank you so much for replying to my post. I think that you have confirmed that Fibromyalgia is my main problem. I never knew that Fibromyalgia could affect the lower back so greatly. No wonder nothing shows on the images that I have had. Well, the x-ray did show that I have bone on bone in L-4.

I so very sorry that you, too, have to struggle with the horrible symptoms that you delineated. I am sorry that your symptoms have increased.

I wonder if you should get an x-ray or an MRI, as maybe something else is going on. ...just a suggestion.

I, btw, drop things, as well. It drives me crazy or makes me very scared. It makes me wonder if I have MS, God forbid.

I only use my microwavable heat pad when I go to bed. Perhaps I should try using it when I am awake.

I slept a long time last night. I woke up with pain in the bones of both arms. Can that be caused from Fibromyalgia?

Willow, again, I thank you for writing to me. Nobody else did. Again, your information was of great help to me.

Gratefully,

TWO DIMES
 
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diamond

Legendary member
Joined
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Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Yes Twodimes the pain goes everywhere..i have arm pain everyday that increases with use or sometimes goes nuts in the night for no reason.

It feels like the bones but its muscles and tendons and ligaments and can affect the joints too where the muscles pull on them. If you press around the inner elbow joint it will probably hurt a lot. It's one of tender points that used to be used to diagnose fibromyalgia.

If you are interested their is a good book by Claudia Marek called first year with Fibromyalgia that is very comprehensive and full of info and helpful advice.
 

Misschloe

Member
Joined
Jan 7, 2016
Messages
21
Reason
DX FIBRO
Diagnosis
06/2009
Country
Uk
State
United kingdom
Hello twodimes like yourself and willow I suffer from pain in my lower back middle back, I have had MRI and have 2prolapsed discs, but fibro pain is everywhere it has no boundaries, I have problems with balance, memory, back legs hand arms , neck , throat as time goes on I add to the list, like you I was convinced I had ms , been through all the test twice, but everything came back okay it's because the symptoms are so much alike, I know it more difficult in the us because everything is down to medical insurance, we are lucky , we have long waiting lists for these things but we do get seen at no cost to us, fibro is a horrible disease and we get pain we never thought possible. Do what you feel right is for you, if having these test gives you peace of mind and it will make you feel more settled knowing , then that's a decision to be made, but the symptoms are very very similar, hope you can put your mind at rest either way
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
Florida
Hi twodimes, for what ever my two cents is worth (sorry I couldn't resist) to answer your question yes I too had sharp pains in my Lower back and down my legs (primarily on my right side) for years, my chirp told me it was from a vertebrae never fully developing and allowing slipping. My fibro was set into full blown by a combination of toxic mold exsposure followed by a car wreck. Then the knife type pain speed all over. Look up allodinya, it goes hand and Han with fibro. Might explain why you feel like your bones hurt. I have days that I can't stand to be touched on parts of my body. At on time I was on medication for vertigo, and yes I've exsperiances dizziness frequently (monitor your blood pressure). Your not crazy, fibro is!!!
 
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Nexi

Active member
Joined
Dec 1, 2015
Messages
90
Reason
DX FIBRO
Diagnosis
03/2002
Country
CA
State
Northwest Territories
Well, Two Dimes, I too have been plagued with the lower back pain but mine is because I have DDD (Degenerative Disk Disease) amongst a list of other ailments. But with DDD it is very painful when the disks are breaking down, and when the calcium spurs form along the spine which causes the spurs to push into the nerves. Doesn't help with fibro in the least but I have yet to drop things because of it although I have been warned that it will eventually come to be.

And fibromyalgia causes so much pain in the whole body, your best friend becomes your heating pads or bottles...I always have my bedroom and living room set, a set I have at work plus a stash for back up.

I hope some of the information above has proved helpful, we are here to help. Just be patient with us, we may be slow at responding sometimes, but we do care. Hugs.
 

knitmehere

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Joined
Mar 28, 2016
Messages
6
Reason
DX FIBRO
Diagnosis
09/2012
Country
US
State
Indiana
If you aren't completely satisfied with the answer that you got from a doctor, there is nothing wrong with seeking out a second or third opinion before you go and having something dramatic done.

The pain in my lower back and legs continuously got worse, and it got to the point that I wasn't able to walk. That's when I finally sat down with someone and decided to have a surgery done. Sometimes you just have to do what the doctor thinks is best because there is a point where it can be too late and the damage too extensive to do anything about.
 

WarriorPrincess

Distinguished member
Joined
Mar 18, 2016
Messages
147
Reason
DX FIBRO
Diagnosis
05/2005
Country
US
State
TX
I have back and neck issues, as well as a connective tissue disorder, with Fibromyalgia, Chronic Fatigue, and the other disorders that tend to go along with those mentioned, such as Migraines, IBS, etc. I think it's always a good idea to get a second or third opinion, especially if you have doubts about the diagnosis, or the person providing it. My other issues came long before the Fibromyalgia diagnosis, but that's not uncommon, especially since Fibro is a fairly newly designated disorder.

It's important to remember that even if each of us had exactly the same diagnoses, we are each individuals, and the disorders present in various ways across people. We also have differing levels of pain tolerance and what works for one may not work for another. What's frustrating about Fibromyalgia is that even once we've determined a course of treatment that helps us, that can change over time. What has worked in the past might not always work, so living with Fibromyalgia is a constant struggle to adjust to changing conditions.
 

oportosanto

Distinguished member
Joined
Mar 16, 2016
Messages
166
Reason
Relative
Diagnosis
05/2015
Country
US
State
FL
That is correct, what worked in the past might not work now, that is why it's so hard to live with fibro, we never know how we will feel tomorrow.
 
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