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Spinal Stenosis, Bulging discs, DDD, Sacroiliitis,

  • Kbelle
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3 years 1 month ago #22666 by Kbelle
Kbelle created the topic: Spinal Stenosis, Bulging discs, DDD, Sacroiliitis,

Spinal Stenosis, Bulging discs, DDD, Endo, POS, Migraines, Sciatica, Arthritis. And possible Sacroiliitis & Cystocele.

I have severe back pain (2 different areas - Lower Lumbar & Sacrum), numbness, pain, pins/needles radiating down leg, lower pelvis and down to ankle. I get pain in my left hip joint, most recently my right shoulder has started to ache too. Sciatica pain, severe above butt cheeks, makes walking extremely difficult. Starting to notice weakness in lower half of body, like I'm struggling to support my top half.
I have a history of anorexia, and 30 kg unexplained weight gain by 5months on last pregnancy, could not walk with all the weight. Add to that the epidural, that they had to give twice, first one went in wrong. I have had problems ever since. I had a really bad fall 2 1/2 years ago, landed on my knees, they absorbed most of the impact.
I was diagnosed, incorrectly, with fibromyalgia, 6 yrs ago, and it took 4 of those years to get a doctor to listen to me and agree. We have moved around in 4 states, so many doctors, and so much discrimination due to my pain pills, I've been abused by doctors, disbelieved, I've even had doctors refuse to keep treating me. I have even been dismissed from an emergency ward, because I wouldn't accept what they were saying. Tried to tell me a certain severe pain I was having was my so-called fibromyalgia, but I knew it wasn't. And because of all these doctor problems, my extended family decided I was putting it all on and they have now abandoned me.
MRI last year showed Stenosis l4-l5, bulging disc l5-s1, DDD. My MRI a month ago showed another bulge l3-l4, arthritis, and stenosis much worse.
So now I am researching everything myself, and trying to fill in the gaps. No one has thought to try and work out how /when/why my problems started. I have theories... Like my tattoo on lower back (sacrum area) or the botched epidural, anorexia and then weight gain??
Because a lot of doctors disregard me, I don't know what warning signs to be looking for, if things worsen. Because every time in the past, when I have bought up a different pain, or a worsening pain, I get told I'm addicted to pain pills, I need to go off them etc etc
And now that I may have Cystocele, Is my LBL from the prolapse? Or from my spine? The numbness and pain around my coccyx and further under, should I be concerned? I walk with a hunch, I practically crawl up the stairs at home, and I can't stand for longer than 5 minutes.
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3 years 1 month ago - 3 years 1 month ago #22667 by john01
john01 replied the topic: Spinal Stenosis, Bulging discs, DDD, Sacroiliitis,
I think most of the people on here have similar experience. I never forget the way my GP was looking at me when I said such and such medication didn't work. Then I was given a referral to see a spinal surgeon, and byebye. Suppose that's what GPs can offer.

back pain / bulging disc
90% of pain gone after having both acupuncture and laser therapy while visiting my family in Brisbane (Thanks for the suggestions from the people here)
stay positive, be strong, never give up hope.
Last Edit: 3 years 1 month ago by john01. Reason: typo
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3 years 1 month ago #22669 by Peter
Peter replied the topic: Spinal Stenosis, Bulging discs, DDD, Sacroiliitis,
Hi Kbelle,

Welcome to the CPA Forum!

It would have been good for you to have posted this post in our introduction thread. So I might just move it there for others to see.

Boy, it sounds like you have a lot going on there, so my only opinion on your initial question would be "Yes" and "I wouldn't have a clue!"
Knowing how our brains like to give us hell, just because we have some illness or injury, anything is possible.

As for your problem with the diagnosis of Fibromyalgia. Can you tell me why you disagree with it? How did you come to the conclusion that you did not have this condition?
I don't doubt you, I am just interested in how you came to that end.

I was diagnosed with Fibro and yes, it pretty much fits what I have suffered for 55 years, so I am happy to wear the label, which I must admit doesn't mean an awful lot today. We have all struggled at some point to receive beneficial treatment and when there are complex symptoms like you have, then it is going to be very difficult to treat from the outset.

Can I ask. Have you been to a multidisciplinary pain clinic yet?
They are the ones with the most up to date information and treatment plans, where they will educate you with what is actually happening to you and why, plus teach you how to self manage your pain.

And as for all the problems you have had with doctors. Sigh! I guess many of us have been down that path, so you are now a member of our large family, where you will be completely believed and understood.

We don't hate on doctors here, because it is not only unnecessary, it is also against the rules, but please by all means vent your frustration as long as you don't name names!

Kbelle, I really hope you gain something from this forum. Please read through all the information on the forum and the main website, because you may find something that could be of assistance.

Take care!


I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
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3 years 1 month ago - 3 years 1 month ago #22714 by Eliza
Eliza replied the topic: Spinal Stenosis, Bulging discs, DDD, Sacroiliitis,
Hi Kbelle,

I'm sorry to hear you're suffering!

Chronic Pain is so hard to understand and sometimes to the professionals who we expect to diagnose and understand us.

What I've learnt is that chronic pain can change the way the brain communicates with the body and then the signals it's receiving are still being received well after the injury has heeled...this in essence is chronic pain or neuropathic pain. The brain is wound up, if this makes sense to took my a long while for me to understand and make sense of this.

It's crazy because I too have chronic pain (neuropathic pain) and much worse when I'm laying down that radiates down from my buttocks to my feet like a big toothache but trying to explain this to my specialists is hard and only a few weeks ago one said I need my head read !!!!!! And he didn't believe my pain...omg, I was in tears!

I do hear your frustration with the medical roundabout as most of us have been on this merry go round however, what I do know is we do know our own bodies and if we listen to it we sometimes know what is best for it and God only hopes the specialist infront of us listens so we can receive the best treatment possible.

I don't know if anorexia then weight gain would have anything to do with it but then I'm not an expert in that field but I do know a ex friends daughter in law that has anorexia and she was having servere problems/pain with her spine during her pregnancy and after it..

Anyway, welcome and please come back!

Eliza :)
Last Edit: 3 years 1 month ago by Eliza.
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3 years 3 weeks ago #22737 by Dressagegal45
Dressagegal45 replied the topic: Spinal Stenosis, Bulging discs, DDD, Sacroiliitis,
Hi Kbelle,
Sorry that you are in such pain and had such bad treatment.
I have had all those spinal diagnoses you have mentioned and also a lot of other joint stuff.
But I went to a pain clinic, like what Peter described and it did change how I view my conditions.
It's easy to fall into the trap of defining you and your pain by your scans. However, in terms of finding relief from your pain, they are not really helpful. Almost all the conditions you list are do not have cures as yet. The only way to manage them is to manage you levels of pain. As Eliza says, chronic pain can change your brain but its also true the other way around. Though processes around pain can make pain either better or worse. Planning your day to pace your activities so that you don't end up in a screaming heap (very hard I know) can also mean very significant pain reduction.
I would encourage you to seek out a pain clinic or check out this book, Manage Your Pain by Michael Nicholas. It's really great and explains so much about what we are going through. It also gives great strategies in how to manage and lower your pain.
Hope this helps,
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2 years 4 months ago #24671 by mcderm
mcderm replied the topic: Spinal Stenosis, Bulging discs, DDD, Sacroiliitis,
I can emphasise,
(having diffuse idiopathic skeletal hyperostosis.)
I had approx six operations on my left ankle, two debridements on my right shoulder,one debridement on my left shoulder, and recently debridements to my left and right outer sac/hip joints.All these to remove excess artificial bone growth.My tendons at insertions and ligaments, including the posterior and anterior lingaments along the spine are hardening.I have d.i.s.h in the cervical,thoracic and some lumbar areas,including the areas operated to date.I have bone spurs and calcificated down the whole spine including spinal stenosis,mainly in the neck.
How can I help you?Maybe I can't but The way I manage things,is to keep moving try and get that brain thing to stop telling me its the end.I have heaps of home remedies, heat and ice packs.small electric blankets.Tens machines.I have been to heaps of physios in which usually aggrevate the situation.Light massages are great.Light activities that don't aggravate your condition.
The best thing I do is, deep water hydrotherapy designed by a physio working under instruction of a ortho surgeon.
The hydro is non weight bearing, it exercises all areas of the body to increase blood flow and build muscle.
For pain in my outer thighs,pain in the butts and caf/ankle.I had an MRI and the surgeon found that I had tears in the glute medius and minimus, read about it, its usually diagnosed for sciatis.
Im on pain killers and anti inflamatory, but in the process to get rid of lyrica,I find my skin burns in the sun and I have depressive thoughts at night when trying to sleep.
There are people out there to help,don't be too harsh.My spinal surgeon sent me away, because he doesn't know where to start.He will operate when I lose or start to lose feeling in my arms ,legs or elsewhere.
Unfortunately most of the hard work needs to be done by us.I found a pain clinic held in Brisbane useful, for me to understand what pain is.So thats why I said to distract your mind,keep busy and do what ever physical movements, activities,exercise you can whilst minimising aggrevation.
If I can help with anything or just chat ,please respond

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