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diagnosed w/ FM, now w/ spine problems...

autumnjoyaautumnjoy Posts: 55
edited 06/11/2012 - 8:41 AM in Fibromyalgia
hello all. i am trying to find out if there are others out there with a similar situation.

i had a hysterectomy almost 3 years ago. after the surgery, i started hemmoraging, and had to be put under again really fast. about a week after surgery, i developed intense pain in my hips. the pain "traveled" through my body, and long story short, i was diagnosed w/ FM about 3 months later.

fast forward to about 3 months ago... i fell on a friends porch steps, and about a week later, developed a different kind of pain in my upper back, neck, and arms, with numbness in my fingers (which is still there).

i decided to go to a new doctor, and not mention the FM, because, as i'm sure many of you have experienced, i did not want my concerns to be passed off "as just the FM".

an mri revealed that my C4-C8 discs were bulging and i have moderate foraminal stenosis at all levels.

the doctor said i have moderate osteoarthritis throughout my spine.

when i first started having problems 3 years ago, i was given an mri of my cervical spine, and the only thing it noted was mild dengeneration.

i just have to wonder if i've ever had fm, or if possibly my symptoms are related to my spine and the arthritis?

i'd also like to mention that since the age of about 13, i'd get mysterious joint pains, a couple times a year, that doctors could never explain. i'm 34 now.

can anyone else relate to any of this? it's been really frustrating to me, to have a diagnosis that doesn't really have a clear cut rhyme or reason, you know?

i'd love to hear anyone else's stories if you'd like to share........... Autumn


  • I have had allover soreness for about 5 or 6 years now. I'm 45 now. I also started having back pain around the same time. The two were different in that the back pain was specific and kniving feeling. The other happened when I was tired or had done more physically than other times. I have osteo-arthritis and was diagnosed with degenerative joint and disc disease about 4 years ago. Throughout the years, I've run a low grade 99 to 100 temp off and on that seemed to coincide with the all over aching. I've had two back surgeries and two neck surgeries now in the last 2 years.

    It's really hard to say whether it's FM or arthritis. FM is supposed to be muscular nerve pain...a myalgia and arthritis is more cartilage inflammatory type. But seems the two go hand in hand if you ask me. None of my doctors believe in true FM, and tested me for the flu, Epstein Barr, and other illnesses. I've had the ANA test that was negative (lupus). My EBV antibody titers were really high, but I've had mono when I was in my 20's. My inflammation counts were high-normal, but not horrible. I've taken Celebrex for 5 years now and it helps some.

    Sorry, I don't have any help, but just sharing that I wonder too...which came first or if they are the same thing. Have you had any bloodwork for rheumatoid or osteo???
  • I had the same thing happen. Dr. did the 18 pressure points test and each point produced seroius pain. So I was diagnosed with Fibro. Four years prior I had a lumbar discectomy. Neurologist treated me for a year and I only continued to get worse. He said fibro doesn't get worse! Went to Neuro had MRI's - cervical showed pinched nerves affecting both arms and lumbar pinched nerves affecting both legs. So did I or do I have Fibro or not? Wouldn't everyone hurt all over with that many pinched nerves? Makes you wonder. That's my story!

    Faith M

  • they sound all too familiar.

    Candle99... i guess i have to agree that they are two different specific pains. my neck and low back have the "kniving" feeling with the extremely tense and painful muscles. the FM pain is different in the way that i ache all over, either from overdoing it, or i swear when the pressure is high in the air, i feel like i am being crushed from every angle. we just had a snow storm here last night, and for the last couple of nights (and days), i've felt horrible.

    i did have bloodwork done, and he ruled out RA, but says i have OA. i've only had the mri of my cervical spine, but i know there's something going on in my low back too.

    i too have very EBV titres, but don't remember having mono. my first diagnosis, after having the surgery and getting sick, was chronic mono.

    FaithM... about the pinched nerves in your neck... my recent mri showed that i have moderate bilateral foraminal stenosis from C4-C8, with the worst being at C7-C8. is that what you have? what prompted me to go to the different doctor, was the numbness in my fingers. it has not gone away at all for over 3 months now. although this doctor found out what was going on in my neck, he is saying that he thinks the numbness is from carpal tunnel, and i don't think that's what it is. i believe it's from something pinching the nerves in my neck.

    i probably need to see a specialist, but do not have insurance, so i'm going to have to figure out something.

    thanks again for sharing your stories, i appreciate it. i guess it is possible to have both. oh joy.:)

  • Stenosis is a narrowing of the spinal canal, this occurs when there is disc or bone material that is protruding and narrowing the canal space. I had herniations, pinched nerves and stenosis. I also had a incorrect diagnosis of carpal tunnel! Numb fingers is not good. After my last cervical fusion it took 2 months to get the feeling back in my fingers. I was worried they would be numb forever. If it's a disc causing the numbness, untreated it can cause permanent nerve damage. Living with that for life is no walk in the park. Take care.

    Faith M
  • i've read about how if the nerve is pinched too long it can become permanant. that's what i'm afraid of.

    i'm going to the doctor here in a little bit. i wasn't supposed to see him so soon, but i seriously can't stand this muscle tension. the flexeril he prescribed is not working. i feel like i have a knife stuck in my neck, and one in my lower back. it stinks.

    sorry that you suffer too.
  • YOUr story sounds too familiar. i also fibro, osteo, been diagnosed with cervical and lumbar stenosis. and to put the icing on the cake , i suffer from RSD disease! chronic pain mixed with all other spinal issues and surgeries is no fun. and you can't distinguish one from the other. went to see my neurosurgeon last week for 8 mths. since cervical surgical for follow up. i was telling him about the bad pain in my neck, it feels like something is pinching in there, i can hardly turn my neck, it is just like it was before my surgery. so he has ordered a catscan, he thinks maybe some of hardware has shifted or loosened. to me, it feels like another herniation, we will see. with the fibro, i hurt and rsd , i hurt all over. and the last thing you need is spinal problems, believe me it never ends. i feel for you AUTUMN. if you ever have any questions, feel free to ask. i've had lumbar and cervical surgeries. and am still having problems. well you take care and soft hugs to ya LEO
  • thanks for responding to my thread.

    wow, you have a lot on your plate! poor thing. i could only imagine how much pain you have to go through.:( i'm sorry that you suffer too.

    thanks for offering your help if i have questions... i'm sure i will! i added you to my buddy list, hopefully we can chat some time.

    take care..... Autumn
  • I'm offer an alternative perspective for you today.
    1. Present model - You have musculoskeletal diseases for which you which to find treatments.
    2. Alternative model - You have a picture of what you would look like healthy.

    Model 1 - Rx is medication and stretching.

    Model 2 - Rx is nutritional and exercise counseling to drop to your ideal weight. Find a pool that you can exercise in all year round. Drop nightshade vegetables from your diet (inflammatory). Look into supplements and conservative herb preparations to augment pain management. Consider a combination of professional acupuncture and home acupressure. Consider working your way back to health versus trying to treat disease and pathology.
  • :D :D You started a great thread. I don't have Fibro but experience exhausting fatigue, which started when I developed sciatica.

    Been through the gamut of docs and blood tests and all tests came back within the normal range.

    I just started feeling like my old self in the last few months. Lost my job in May of last year and have been coasting without work since then.

    So I think I'm ready to find a job in this mess of an economy. Yesterday, I walked for an hour, came home and ate lunch, and then worked planting my garden for a few hours. Today, I have felt like Gumby -- flattened by a semi! It freaks me out because I want to go back to work so badly but wonder if I'll be able too.

    Just sharing my story of woe too. Who know's what the heck is going on with our bodies? The docs sure don't!

    Take care,

  • thankyou so much for your reply. you've definaately brought up some great points.

    i've been running from doctor to doctor for the last 3 years, and still feel awful. i still don't have any treatment that's working, and still feel bad.

    i do think it's time to take matters into my own hands.

    i've been looking into CBT. i know that exercising will help in the end, it's just a matter of getting going, you know?

    i'll be looking into alternative meds too. it couldn't hurt!

    thanks again.
  • i'm sorry that you suffer too. it surely stinks!

    i sure wish i did know what was really going on in my body. you are right though, the doctors sure don't!

    i hope you get to feeling better, and that you may eventually get back to work.

    take care..... autumn

  • Hi Autumn/Joy!

    I was diagnosed with FM about 4 months ago. I'm sure I've had it for years. I went to a Rheumatologist. I had cervical spine surgery one year ago to remove bone spurs and take pressure off nerve roots. I have permanent nerve damage.

    I have lower back pain as well. My Neurosurgeon said he would do surgery in a year on that issue. I have bulging discs, osteoarthritis in my lumbar area.

    One thing about FM is since it is all over the body it is sometimes hard to distinquish from spine issues. My cervical spine problem caused pain in my arms. That pain continues one year after surgery because of permanent nerve damage.I I'd had that pain for about 3 1/2 yrs before doctors figured out it was coming from my neck.

    Anyway, yes, I have some very definite similarities to what you are going thru.

  • Hi, I've been diagnosed a few months ago with Fibro but I think I've had it for years. The Rheumatologist said it's brought on by a problem with my back and sent me for physical therapy. After 6 weeks, I was released from pt and was told to do the stretches at home - which I did almost everyday. Didn't help. Mean time, my back is getting worse. I went to a back Dr at the Mayo Clinic thinking surly they can tell me something. All he did was press on some places and tell me I had Fibro. Duh! I already knew that, I wanted to know what was wrong with my back. He said the pain in my back is from the Fibro - just the oposite of the Rheumatologist (who also is at Mayo Clinic). Then he sent me back for more pt which makes it hurt worse. To top it off, my legs are feeling heavy and tingly and I constantly feel like someone is sitting on my back and pushing all the air out of me. I feel like there is something really wrong with my back but don't know who to see next. I've been round and round with Drs.
    This stinks
    Hope you all are feeling better
  • i am so sorry you are dealing with this crap too. it's crazy to me, that there are so many of us out here with the same issues, yet alot of us get swept to the side. it's so sad.

    i've been around and around with the doctors too. i'm actually over them right now. it's too mentally and physically draining for me to keep going from one to the other, and not finding one who takes me or my pains seriously.

    i am going to finally try the "natural" approach, and incorporate exercise, eating more healthy, and possibly supplements. it's going to be tough, but hopefully worth it. it's the only thing i havn't tried! lol.

    i hope you can find some releif soon....... Autumn
  • Has anyone gotten any help or relief? My back is hurting bad lately. I keep thinking I should see another Dr, the physical therapy I did didn't seem to help much. I still do the stretches at home hoping it will help and I try to do other things, like gardening and walking. But it seems to make my back worse and at times my legs hurt too. I've been thinking about going to an orthopedic surgeon but I'm not sure if that's the right kind of Dr to go to. Is that the kind that deals with the back or is it the neurosurgen?
    I can't help but wonder if my problems is caused by my back and not Fibro. I've had an MRI (without contrast) and xray over a year ago and it didn't show much - just some degenerative discs and a slight curve. Should I get another MRI with contrast? The last Dr I went to was called a physiatrists (specializes in physical medicine and rehab) He didn't want to do any MRI or xray. He said it was Fibro.
  • Medicine is in it's infancy right now. Advances have only been made in the last forty years or so.

    It's my understanding that there are surgeries to fix structural problems with spines but not pain problems... unless it's direct nerve compression...severe enough that it's constant or interferes with motor function. (I could be wrong but pretty sure I'm right.) Your MRI apparently didn't show structural problems of concern, so another one with contrast may give you "the reason" for your pain but the treatment won't be any different. Even when structural problems of concern ARE found...most people are in physical therapy ... pushing themselves as much as possible...ugh...for a while. We Fibro people take the same meds as spineys, you know?

    So, it could be the Fibro and it could be your spine. They've ruled out structural problems of *immediate* concern but not been able to adequately pinpoint the reason for your pain. Is it worth spending more money when the treatment is the same?

    If you're experiencing numbness or weakness that doesn't go away, then I'd insist on another MRI but I don't *think* there'd be much point in it now.

    That's just my personal opinion. I hope it makes sense.

    Feel better soon.
  • hi i was diag with f/m 4 years ago,the only trouble is i tend to put everything down to it,i resent started with blurred vision,mucsle cramps,off i went back to the docs once again,having loads of blood tests thurs so should know results next week,i started with scatica in 2009 and its no better today.i have carpel tunnel in both wrists,cervical spondilosis,sorry about the spelling,does anyone think all these are related,i feel like a walking chemist,sorry to hear about everyone suffering
  • I feel for everyone who has to live with this; my muscle pain, spasms, low grade temp, insomnia, and misc pains that make no sense started back in February- and don't forget the FOG..
    I take so many meds and feel like a mobile pharmacy. I also have my chronic low back pain and nerve damage to deal with as well as an autoimmune disease. I can't type too much b/c my fingers will hurt and go totally numb.
    Thanks for letting me share this with you all. Take care
  • I was in a major car accident in Dec of 2007. I had never had issues w/ major pain before that...so it all came on as quite a shock. I did well after my spine fusion (in my neck) and then was diagnosed w/ having a herniated dics in my lower back that they've opted to treat w/ an epidural injection series. In the meantime, I went back to my Dr (who sent back to the pain mgmt dr.) and I was told that I had all the points for fibro and all of my symptoms were classic signs of it. Ive heard of major back injuries cauing the onset of firbo - but not the other way around. I wonder if you were prone to the back injuries anyways and that fall you took sealed the deal??
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