Hi there, new to this section of the board and to be honest dont even know where to go from here.
I had on going back problems for over 6 years, which resulted last year in having a fusion of L4 L5 and L5 S1. Did I improve, slightly, can I still stay up all day due to the pain in my back no.............. Walking is hard, and standing is worse. I tested positive for HLAB-27 which was a gene for Ankylosing Spondilitis, went to see a Rheumy, who did not look at my back, nor did he check my range of movement which is 25% according to my GP and I have no movement in my back going backwards !. He pressed by arms and legs and said you have fibromyalgia........... okay they are tender to touch, but I do not have extreme tiredness, it is more my back pain..... that is making me lye down....... he told me its Fibromyalgia thats it..... yet when I was with him a few years ago he told me it was discs and that is why I had been going down the back route.............. now since the back is no better it is "Fibromyalgia", I dont know if this is because he cant find anything else to call it, but I really wasnt happy with the outcome. He told me unless I got moving I would be worse... explained I cant walk far due to the pain........ I just got the feeling he thought I was lazy, wanted to know If I felt tired I said no. which I dont, I need to lye down as I get so sore sitting with my back. Then told me that the fusion wasnt needed !!!!!!!!!!! He had a list of questions that he just rattled off, and ticked all the boxes, yet I couldnt get to say my piece........ I really dont know where to go from here. My pain management guy said he wouldnt over rule what he said........ Should I get a second opinion? or is this fibromyalgia? or just a chronic back?
Round1
Hey, Round1, and welcome. I'd get a second opinion and even a third. Some of these guys are so full of themselves, they'd never consider thoroughly thinking through something before they declared it, and fibro is a diagnosis that almost guarantees a certain hands-off attitude from even primary care doctors. Some feel so validated by that label. I was for awhile, until I saw the difference in how I was handled in doctors' offices.
One thing's for sure... having severe back pain does not = someone lazy.
Another thing... fatigue is usually one of the hugest parts of fibro, so your instincts might just be right to pursue this elsewhere.
Many on this board have had fusions and disc problems; some feel their surgeries were the very thing to awaken fibro in them. Some feel some major stress was what started it. Because you've had the fusion and the major frustration in dealing with the pain afterwords, this could very well go in the fibro direction. I would caution you to stay on here and receive encouragement to pursue this with doctors, but with much patience and calming the stress at every corner. Don't let the stress of folks not believing or not taking the time with you to try understand add to the pain. Guard yourself vigorously in that regard. Just tell yourself that this next year is going to involve some real research and effort and you're okay with that. You can handle that.
And stay on here. Get the encouragement you need. Not being believed is one of the hardest things in the world to deal with. Stay here and let others validate that pain and build your confidence so you can get that second opinion. We're all glad to meet you, but none of us wants you to have fibro. I sincerely hope you will stay, you will study fibro on your own, and you will get that second opinion. Most of us were diagnosed after a major stress/illness, after much fatigue, and a good many stories I have heard involved the 18-point pain test. If your rheumy didn't touch areas around your shoulders and neck, on your hip, around your knees, around your feet and around your ankles, then he didn't even do the most basic test for fibro. That test is not conclusive, but it is basic. Pursue the course, kiddo, but with detachment and a determination to not stress over the lack of belief. As one of our most trusted members, bluelakelady, always tells us... stress is food for fibro--don't feed it.
Take care. Sorry you are in pain!
Last edited by baserockermom; 04-14-2008 at 05:15 AM.
Hi there, thank you for your replies. I am totally totally lost, I am reading about your pain on the board here, I am come from the back surgery section to the pain management section, now to the Fibromyalgia section.... I am reading about the symptoms you all are having and extreme pain etc....... and I am saying yes to alot of it.......... but also no to others....... I am ready to pull my hair out............ All I want to do is be able to stay up during the day and look after my son............. with out mum having to lye down........ it is as if I am carrying two great big sacks of potatoes around with me when I am walking. My lower back is okay sometimes, and then its as if if creeps up all the way to the top of my back, when I walk for more than 10 minutes.
Questions for you if you wouldnt mind answering please:
Does your back get to a level where you cannot stay up one minute longer?
Do you ache all over your back after walking, Clothes shopping I cannot do, just the strolling kills me
Does sitting hurt you
Do you have to lye down during the day?
What medication do you find helps the best?
I was told an old type anti-depressant would be the best, to cut of the pain signals going to the brain, but at the moment I am taking Oyxcontin which I want to see if it helps rather than changing again only after a short time.
Thank you for all your help, I really appreciate it, I find I am just banging my head off a wall here.................. and I have read and read all I can about it........ some makes perfect sense and more doesnt add up..............
Thanks
Round1
Round 1, welcome to the fibro boards. I have chatted with you on the pain management boards, and I am glad,but sorry too, that you have to be here too! I have a hard time with walking, and standing on my feet longer than an hour. They start aching, and then burning. I look like a child who has to go pee, and I also have used shopping carts as a crutch to get out of stores quickly. The one thing that I have not experienced too much of is back issues, since I have had my battle with chronic pain, but I am crossing my fingers, I don't take anything for granted anymore. I was taking lyrica and had to stop due to swelling in my feet and hands. I was on Lyrica for about 1 month, and I was on 150mg 2x daily. When I was only on 75mg 2x I did not notice anything, and I still had arms and leg pain, like I have now. I went to the dr on friday, and was told to take 150mg for 5 days, and then 150mg every other day for a week, then stay off for 1 month, and then maybe we will try it again. Well, since being on 150mg my pain has come back in my arms and legs. It is so frustrating.
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