Unable to sit

[Novascotialady]

Thank you I just did the self test and my scores were WPI was 7 and SS was 9

 

[Novascotialady]

JohnSalmon
Would you be kind enough to share what surgery you had for your pain ?

 

[johnsalmon]

I’m wondering if a surgery for the disc that is torn would help .

this is a possibility

an annular tear is the tearing of the fibre of the bone and can happen without compressing the disc however which way it happens the nerve is being compressed which is causing the pain down the leg etc however a MRI will show up any compression of the nerve. I would have a stern view of any doctor that said it will heal in 3 years and expects you to put up with such pain. if there is compression of the disc then there is really only one course operate and fix it. if it does not show on the MRI then a myelogram might but what you explain is not fibromyalgia but spinal problems and as a sufferer I feel for your pain

 

[Novascotialady]

Yeah I am in Canada and sometimes it quite hard to navigate the system . Mri doesn’t show compression just diffuse bulge and annular tear , that’s why he doesn’t advise surgery . But I feel discectomy would help my misery .

 

[johnsalmon]

Mri doesn’t show compression just diffuse bulge

some times its good to ask for a second opinion

 

[JayCS]

Thank you I just did the self test and my scores were WPI was 7 and SS was 9

So that would speak in favour of you having fibromyalgia. But it doesn't prove that every one of your symptoms is fibromyalgia or that you don't have anything else.

My pain is mostly from my waist down and sometimes in my hands

A question a while ago made me look at our online test which I seem to remember doesn't make as clear as it should that we need to have pain in 4 of 5 body areas, additionally to the combintation of WPI and SSS being high enough. Whilst pain in both hands would cover those areas it might still be something separate.

the pain. I have in my low back that is severe and chronic 24/7 therefore I’m wondering if a surgery for the disc that is torn would help .

My worry in such a case would be that the surgery procedure might be such an additional wear that it'll make your central sensitisation worse.

if this is fibromyalgia than a back surgery and will not help me.

... So having fibromyalgia doesn't prove that it won't help.
But if your spine expert says it won't they might well be right.

some times its good to ask for a second opinion

I('d) go even further and say: definitely. I got 2nd and 3rd opinions for many of my symptoms, sometimes immediately, sometimes when the chance arose and I was getting something new checked anyway. In this case I'd ask a neurosurgeon, a neurologist, an orthopedist, my GP, 2 manual therapists (chiropractor, osteopath). Plus a 2nd neurologist or orthopedist.
It doesn't seem in this case that delaying the decision will make it worse, as the recommendation is not to do it anyway. But there's always more treatments to try and good to continue that while the decision isn't clear and not get stuck in option paralysis (like Buridan's ass), like a friend of ours.
Decisions like these may just be rolling the dice. But we can educate the guess by analyzing the symptom in detail, comparing to others like you are doing, asking more people, trialling even more treatments, in your case preferably manual and exercises, and trying to look back to previous experience and get a feeling for our own body.
I've got a spinal tumour which may be or become dangerous, but is probably harmless and probably not contributing to my spinal problems. My neurosurgeon would love to take it out, no problem, my neurologist, several radiologists (I get it checked every 1-2 years), orthopedists, GP, psychiatrist and manual therapists say no. I believe the surgery procedure would cause me big back pain problems for months to years. That partly comes from a spinal tap and a spine injection procedure needing me months to recover.

My Neurologist has ruled out MS, but she mentioned that it is central sensitization. .....
I’m also confused by the central sensitization does that mean it is fibromyalgia or something like fibromyalgia?

"Yes." i.e. both: It means it could be fibromyalgia or it could be something similar.
Central sensitisation would (in both cases) mean your central nervous system (CNS) is over-firing, sending pain signals where there is no reason to. The more areas of our body are over-firing, the more likely it is that it is a central sensitisation syndrome (CSS). That makes it well possible that it is fibromyalgia, but it could also be something similar. The main alternative would be CRPS: Complex regional pain syndrome. While central pain syndrome, CPS, will have some kind of an "injury" triggering it.
Fibromyalgia as a CSS is only a theory, however, even if it's the most common one. I don't believe mine is, because I don't have things like hyperalgesia or allodynia.

If your neurologist says it is central sensitisation, meaning there is not enough injury to explain your pain, and your spine expert also says there isn't enough to explain your pain, then you have two experts agreeing not to get the surgery done.
Praps reading up / listening more about how pain works, like Lorimery Mosely and Irene Tracey will help you understand the CS side of things better to make a balanced decision.

I have done a lot of reading, and I certainly do have a lot of the symptoms for fibromyalgia. Besides the ones that I’ve already mentioned, I also have a lot of stiffness, especially in my back muscles and in my legs.

Stiffness centring in the back muscles and legs would not seem to be fibromyalgia stiffness as much as being directly related to the back problem, either part of it, or I'd think more indirectly via not being able to mobilise it well enough and relieving/protective postures (which often double the trouble).
Fibromyalgia stiffness is more in the mornings for most, but for many like me after every holding of a posture for a few minutes. It is more all over, seemingly in all joints, and that's what it looks like, altho some would think and often say "how's your back?". but actually the tendons around the joints and/or the muscles stiffening. Stiffness from local pains may contribute to this, but is something different. Like my stiff pain in the neck the last few weeks.

 

[johnsalmon]

there is a distinct difference between pain of the CNS ie fibromyalgia and pain caused by say pinching the nerve on exit from the spine ie Sciatica - what you describe is not fibromyalgia or any MND's the best way to overcome this pain is via a tens machine - place a pad each side of l5/l4 and the pain will disappear what the tens does is disrupt the pain signal back from the brain - sadly tens do not seem to be effective with fibromyalgia -

 

[JayCS]

MND's

Is that motor neurone disease? Not sure, and not sure of the connection here?

the best way to overcome this pain is via a tens machine - place a pad each side of l5/l4 and the pain will disappear what the tens does is disrupt the pain signal back from the brain - sadly tens do not seem to be effective with fibromyalgia -

TENS is a brilliant suggestion. Going deeper the more expensive microcurrent units that seem to work differently at a level of the normal body currents.
However I've heard of 100s saying on the forums it's effective for their fibromyalgia pain, including @sunkacola. However "disappear" and "disrupt" would appear to be overstating, from what I've heard I'd say it "reduces", at most "minimizes". Maybe that's then a difference to sciatica pain, if that really does disappear? Sounds perfect for sciatica, is it? (I can't use electrotherapy cos of seizures.)

 

[johnsalmon]

Is that motor neurone disease? Not sure, and not sure of the connection here?

yep the original poster was worried about ALS- MND covers a group of 6 medical conditions it is not a disease in itself. -ALS is one of the six.

 

[Novascotialady]

Thank you Jaycs- very helpful . I have morning stiffness everyday but usually it’s gets better with movement and within 30 minutes. Also get stiff with staying in a position and have to move every few minutes to help with pain . Stiffness also bad in hands in the evening . Joints are stiff too . Winter time it’s hard to walk up the stairs .
A lot of GI issues .
Bladder retention and frequency.
Memory loss and fog
Crawling sensations on both legs and feet .
Pain is low back and down buttock like sciatica but also a lot of pressure in my pelvis.
I have had second options from orthosurgeon , neurosurgeon and spinal implant specialist .
Waiting on EMG . Then I have no one else left to see .

 

[JayCS]

So all 4-5 specialists say don't get surgery done? Then I'd concentrate on the alternatives. I doubt the EMG will show anything, probably "just in case"...

The first three symptom areas are a lot like me. Stiffness I reduce with stretches, GI I minimize with elimination diet, whilst my bladder is very "special" - in my case pain, urgency, frequency = PBS / OAB, which I reduce by drinking almond milk instead of more watery liquids and GABA minimizes the pain. Crawling sensations can be helped by a TENS unit too I think.

 

[sunkacola]

Does FM cause someone to have such severity and pain that they are on unable to function at all and have to spend most of our time lying down at home?

Generally not, and if you take proper care of yourself this will not happen.

the problem is is when I sit longer it’s not just a pain at the base of my spine. I have burning pain down my right buttock and my right thigh and down my right leg. I have numbness that goes right down to the bottom of my foot, I also get random stabbing pains in my thigh, my buttock and calf, and if I force myself to sit through it I will typically go into a flare that could be weeks long.

So, don't ever force yourself to sit through it! Try different positions, different chairs, etc to see if there's any kind that will work for you. Try a kneeling kind of chair. If none of them work for you then what about a recliner? Or, just don't sit very much. Walk, stand, sit, then walk, lie down, etc.

My spine surgeon says there is nothing to be operated on and it’s not my back . Even though he said 3 years ago I had an annular tear that should heal in a couple of years !

Surgery on your back would be an absolute last resort in any case, as it will often not go well and can make everything worse. I strongly recommend trying chiropractic.

does that mean it is fibromyalgia or something like fibromyalgia?

This is not a question anyone here can answer. All we can say is it might be and might not be. You have to be tested for everything, try various things to see if they help, and only by eliminating all the other things that could be causing your problems can you have any certainty it is fibromyalgia, and even then it's really only something we assume it is because nothing else fits.

To me it sounds as if your back problems could be causing everything else you experience. Remember that what goes on in your spine affects every single other part of your body. I have had pain and lack of function in all kinds of areas of my body that were lessened or even eliminated by good chiropractic work.

I feel discectomy would help my misery .

Also could make it a lot worse, so it seems wise to go with the doctor'
s advice and not do it.

 

[sunkacola]

Thank you Jaycs- very helpful . I have morning stiffness everyday but usually it’s gets better with movement and within 30 minutes. Also get stiff with staying in a position and have to move every few minutes to help with pain . Stiffness also bad in hands in the evening . Joints are stiff too . Winter time it’s hard to walk up the stairs .
A lot of GI issues .
Bladder retention and frequency.
Memory loss and fog
Crawling sensations on both legs and feet .
Pain is low back and down buttock like sciatica but also a lot of pressure in my pelvis.
I have had second options from orthosurgeon , neurosurgeon and spinal implant specialist .
Waiting on EMG . Then I have no one else left to see .

Have you been tested for Lyme disease? Lupus? These are some of the many things that could cause some of these symptoms.

Pain in lower back and pelvis and down your buttocks is very likely to come from your spine. A good chiropractor can address this and make it better.

Stiffness that you describe is not uncommon even if you don't have anything like fibro going on. Inactivity will often cause stiffness, especially when a person is no longer all that young....sorry, I don't know how old you are. This is often worse when cold, especially in the joints, and especially when it is a cold and damp climate such as you live in. This can all happen, similar to arthritis, without it actually being diagnosable arthritis or fibro or any one thing, but just from the fact that your body isn't young any longer. Almost everyone experiences this at some point if they live long enough.

 

[sunkacola]

@Novascotialady .....a TENS unit helps me a lot with the creepy-crawly sensations in the legs. They don't cost that much, and you can get it online. It can also help with back pain.

GI issues may have to do with what you are eating. Definitely, as @JayCS says, do an elimination diet to find out if you are causing all of that with what you eat. My serious GI issues, for instance, which I had had my whole life, were reduced by about 90% when I stopped eating gluten. Many things can cause that, so doing some serious experimentation with your diet is imperative. Remember you have to cut whatever it is (ie: gluten, or dairy, etc) out of your diet COMPLETELY, which means not even a tiny bit and you need to read labels on everything to be sure of it. You have to do it for a minimum of one month to see if it makes a difference or not. If not, move on to the next thing. Be determined and methodical about it. It's worth the effort.

Anyone who is getting stiff as you describe should do regular stretches, gently but daily. You might be amazed at what a difference that makes.

Read this and start doing your own experimentation with things. Whether or not you have fibromyalgia for sure is not even the main point. You need to do what you can do for yourself to see how much you can affect what you experience by what you do and eat. Best of luck!

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Novascotialady]

Thank you so much for all your feedback and the time to respond. I was 48 when all this started I have no other health issues. I am now 51. I also suffer from chronic fatigue. I just heard from my neurologist, and they are doing an EMG at the end of the month. Maybe my neurologist can give me some more answers as to what she thinks is going on.