Round1
04-14-2008, 07:44 AM
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
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
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baserockermom
04-14-2008, 08:14 AM
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!
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!
Grapedy
04-14-2008, 01:32 PM
Definitely get a second opinion. In fact, I'd dump that doctor completely and find somebody totally new.
Round1
04-14-2008, 03:13 PM
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
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
gorgee
04-14-2008, 06:31 PM
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.
Once again, welcome! and good luck,
Kassandra
Once again, welcome! and good luck,
Kassandra
Round1
04-15-2008, 02:41 PM
Hi Kass1375, glad to see a familiar face !! well you know what I mean........ what is going on here with out bodies...... I dont know if I am in denial or what, but I dont really believe that all this back pain is due to fibromyalgia.......... reading from the threads here, people suffer all over and mine seems to be just centered here in my back............ my pain management guy doesnt want to over rule what my Rheumy guy said, so I am to plough along on the oxycontin for awhile more and rehab physio. I havent really got much relief from 10mg of oxycontin morning and 10 mg at night. The Rheumy guy said I wouldnt and he prescribed an old type anti-depressant for nerve pain, to try and stop the signal of pain getting to brain. Told me Fibromyalgia is all down to a chemical imbalance... so I am sorry if I dont not have the right spelling for it Amatriptline........ something like that, sorry the bottle is upstairs, if I have made a total dogs dinner of the spelling I will post the correct one later.... Did you try it? I was on Lyrica, a few years ago and after the foggy days I didnt really find it much good, but that was prior to the fusion...........
Round1
Round1
pigface
04-16-2008, 09:03 AM
hi round 1
thanks for your reply on (feeling a guilty parent) your symptoms seem very similar to mine, mine started 6 and a half years ago on having a spinal block for my 1st baby, and was only stiffness in the mornings a typical sign of ankyllosing spondillitis and a too am HLA-B27 pos so for a while i was fobbed off with visio and meds, it took 5 years of seeing diff doc's and getting nowhere! and eventually last may i got up 1 day and couldn't do anything for myself which lasted 3 weeks and has ended in cont pain 24 hours a day!
i am now under a spinal surgeon who has said he will do a fusion or the new dynesys which is same as fusion but with rods inbetween screws so should be quicker healing and more mobility long term? anyway i have just been put back to end of july so wont find out just yet, so fed up with nhs system it makes me feel bitter and angry when its took all this time.
i am on oxicontin and morphine plus anti sickness which help but still have sick days, i was on really high dose of just oxicontin but found the hallucinations and nightmares too much so they cut that down and put me on the morphine, still hallucinate at night and dreams and nightmares seem real but i can cope with that, the meds make me feel tired and sick and like you have trouble sitting or standing too long and to walk is painful but i am a strong character and force myself, but without meds cant cope so what choice do i have? i haven't read about this you have fibro..... and i understand you have already had fusion, the best i could say is dont just accept it find out all you can and anything that can be done HAVE as to the system you are just a number and no one should suffer if something can be done! they say mine is degenerate disc's at L4/L5 L5/S1 so the fusion or dynesys should take presure of and eleviate pain? not sure on this but willing to try anything at mo.
any usefull info please pass on as dont seem to be getting any replys or positive feedback form anywhere. will look up what that fibro... thing is as like i said you sound so similar to me.
oh how i miss the normal things in life!!!!!!!!!!!!
if you want to private mess me i am on the ispine forum under wendy x x
thanks for your reply on (feeling a guilty parent) your symptoms seem very similar to mine, mine started 6 and a half years ago on having a spinal block for my 1st baby, and was only stiffness in the mornings a typical sign of ankyllosing spondillitis and a too am HLA-B27 pos so for a while i was fobbed off with visio and meds, it took 5 years of seeing diff doc's and getting nowhere! and eventually last may i got up 1 day and couldn't do anything for myself which lasted 3 weeks and has ended in cont pain 24 hours a day!
i am now under a spinal surgeon who has said he will do a fusion or the new dynesys which is same as fusion but with rods inbetween screws so should be quicker healing and more mobility long term? anyway i have just been put back to end of july so wont find out just yet, so fed up with nhs system it makes me feel bitter and angry when its took all this time.
i am on oxicontin and morphine plus anti sickness which help but still have sick days, i was on really high dose of just oxicontin but found the hallucinations and nightmares too much so they cut that down and put me on the morphine, still hallucinate at night and dreams and nightmares seem real but i can cope with that, the meds make me feel tired and sick and like you have trouble sitting or standing too long and to walk is painful but i am a strong character and force myself, but without meds cant cope so what choice do i have? i haven't read about this you have fibro..... and i understand you have already had fusion, the best i could say is dont just accept it find out all you can and anything that can be done HAVE as to the system you are just a number and no one should suffer if something can be done! they say mine is degenerate disc's at L4/L5 L5/S1 so the fusion or dynesys should take presure of and eleviate pain? not sure on this but willing to try anything at mo.
any usefull info please pass on as dont seem to be getting any replys or positive feedback form anywhere. will look up what that fibro... thing is as like i said you sound so similar to me.
oh how i miss the normal things in life!!!!!!!!!!!!
if you want to private mess me i am on the ispine forum under wendy x x
poppy7
04-16-2008, 09:51 AM
Hi Round1, just been reading your list of questions and for me the answer is YES ! to most of them, especially back pain after walking and even just sitting still. My GP has put me on Amytriptyline the same as yourself but i've not found it to be very effective. I was started off on a low dose which didn't touch the pain at all, but when i was put onto the higher dose it really knocked me out ! The difference i noticed between what your doc told you and what mine told me is that it supposidly relaxes all your muscles and works as an antidepressant so should cut down on the pain. I was prescribed it cos one of my main probs is severe back pain and chest pains but i'm having to go back to the docs to try something else. it's ok at a push for pain relief but i spend most of my time really tired with it and dopey as anything ! I did try taking ibuprofen, co-codamol and just the lower dose of amytrip but i've had too many side effects to feel like carrying on with it.
I'd definitely go back to your docs if you;'re not happy and keep on at him til you are.
hugs
poppy x
I'd definitely go back to your docs if you;'re not happy and keep on at him til you are.
hugs
poppy x
TexMom85
04-16-2008, 01:20 PM
Hi Round1,
I've been mostly on the Pain Management boards, but have suffered from FM for years. I truly think that prolonged stress, as well as physical trauma (like a back injury, or surgery, or both) are contributing factors in developing FM. I am sorry to hear you are suffering so much. I wish there were a specific test that could verify whether or not a person has FM, but from your description of the doctor's exam and diagnosis, I would definitely get a second opinion.
I, too, have back pain as well as pain from a pinched nerve in my neck. This pain, however, is different from my FM pain. For me personally, the FM pain is like an all-over body ache, very deep, and relentless. I hurt especially in my joints, like knees, shoulders, elbows, ankles; but, I also just hurt all over. The level of pain varies depending on my activity level, quality of sleep, and apparently, what I eat. Sugar seems to aggravate it even more. Insomnia has been a major factor for me, and of course the crushing fatigue. Now, even if I do get a full night's sleep, I am still sluggish and my activities reflect my lack of physical stamina.
It is difficult to find a doctor who will go the extra mile and not only make sure you have FM, but be willing to try various things until you find the remedy that helps ease your pain. I took Elavil (amitryptilline) for years, and while it was effective in reducing pain and improving sleep, I gained an enormous amount of weight. This contributed to my developing sleep apnea, which is not a good thing for a chronic insomniac. I am still struggling to get the weight off, years after weaning off the Elavil.
Sweetie, it sounds like you're really suffering and need to find a doctor who will consider all of your health factors and determine what's really causing your pain. Back pain can be just horrific and possibly cause other parts of the body to feel pain as well. But I'd hate for you to be diagnosed with FM if you don't have it. It's not a good thing to have on your health record, and like others say, some doctors shy away because they just don't know what to do about it.
Bottom line--get another opinion, don't be afraid to fight for yourself, and listen to your body when you try a medication. If it's causing other problems, consider an alternative. And come here often--there are wonderful people here who can really empathize and give you encouragement as well as helpful information. To me, it's a real Godsend.
Hope you feel better soon, sweetie!
((Hugs))
TexMom
I've been mostly on the Pain Management boards, but have suffered from FM for years. I truly think that prolonged stress, as well as physical trauma (like a back injury, or surgery, or both) are contributing factors in developing FM. I am sorry to hear you are suffering so much. I wish there were a specific test that could verify whether or not a person has FM, but from your description of the doctor's exam and diagnosis, I would definitely get a second opinion.
I, too, have back pain as well as pain from a pinched nerve in my neck. This pain, however, is different from my FM pain. For me personally, the FM pain is like an all-over body ache, very deep, and relentless. I hurt especially in my joints, like knees, shoulders, elbows, ankles; but, I also just hurt all over. The level of pain varies depending on my activity level, quality of sleep, and apparently, what I eat. Sugar seems to aggravate it even more. Insomnia has been a major factor for me, and of course the crushing fatigue. Now, even if I do get a full night's sleep, I am still sluggish and my activities reflect my lack of physical stamina.
It is difficult to find a doctor who will go the extra mile and not only make sure you have FM, but be willing to try various things until you find the remedy that helps ease your pain. I took Elavil (amitryptilline) for years, and while it was effective in reducing pain and improving sleep, I gained an enormous amount of weight. This contributed to my developing sleep apnea, which is not a good thing for a chronic insomniac. I am still struggling to get the weight off, years after weaning off the Elavil.
Sweetie, it sounds like you're really suffering and need to find a doctor who will consider all of your health factors and determine what's really causing your pain. Back pain can be just horrific and possibly cause other parts of the body to feel pain as well. But I'd hate for you to be diagnosed with FM if you don't have it. It's not a good thing to have on your health record, and like others say, some doctors shy away because they just don't know what to do about it.
Bottom line--get another opinion, don't be afraid to fight for yourself, and listen to your body when you try a medication. If it's causing other problems, consider an alternative. And come here often--there are wonderful people here who can really empathize and give you encouragement as well as helpful information. To me, it's a real Godsend.
Hope you feel better soon, sweetie!
((Hugs))
TexMom
Round1
04-18-2008, 11:56 AM
Hi am so so sorry, today I have only come to this post, I had been on the Pain management section for the last number of days....... I am so sorry it is only today I have read these posts....... Wendy think I found. Need to sort computer and log and reg. will do the PM Msg. tks love to .
As I said I have been on the pain management section as I had a bad few days and feeling down and fed-up. I suppose I really dont agree with what the consultant has told me....... I would have if he examined me properly so I am going to get a second opinion. During the week I went to a hydrotheraphy pool ohhhhhhhhhh bliss. I decided my life would be just lovely if I was a fish and just stay in the warm water....
Sorry for not getting back to this post, its just one minute I am on the back section then feel after nearly 12 months there...... I cannot get answers, so went to pain management.......... then I was told fibromyalgia....... thank you all
Round1
As I said I have been on the pain management section as I had a bad few days and feeling down and fed-up. I suppose I really dont agree with what the consultant has told me....... I would have if he examined me properly so I am going to get a second opinion. During the week I went to a hydrotheraphy pool ohhhhhhhhhh bliss. I decided my life would be just lovely if I was a fish and just stay in the warm water....
Sorry for not getting back to this post, its just one minute I am on the back section then feel after nearly 12 months there...... I cannot get answers, so went to pain management.......... then I was told fibromyalgia....... thank you all
Round1