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PMRGCAuk
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PMR pain and Pain from damaged lumbar spine

Hello all.

I 'm writing in desperation for some advice.

Until recently my PMR pain was well controlled by pred. Down to 8mg per day.

My Rheumy identified other pain source and MRI scan revealed a bulging herniated disk (L4) pressing on spinal nerves.

Pain now is awful. Got myself to surgery last week. Couldn't stand up when my name called. Had further Xrays (because of a, recent fall). Don't know result yet.

Seeing spinal surgeon on 8th May.

GP last Friday said take Ibuprofen, 400mg tabs three times, a day plus co-codamol 30/500, two tablets up to three times a day.

Also diazepam 2mg three times a, day,

Plus I'm on pregabalin 50mg a day.

None of this is making much difference to the pain. I've upped the pred to 12.5mg but the pain is still awful. I'm severely tempted to increase the pred to 15 or even 20 in case some of this is PMR flare.

Any advice will be much appreciated.

Thanks.

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With such a complex situation I think you have to discuss this with your doctors and get through to them that the fairly basic pain medication you have been given is doing nothing. I would be somewhat concerned about mixing ibuprofen and pred - unless your GP has also provided something as stomach protection.

Nerve pain is truly excruciating - can the spinal surgeon not offer any relief or an even earlier appointment? But I also have to say, despite spinal surgery for a similar situation, my son in law still has considerable pain due to post-op adhesions - it is LESS pain however.

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Thanks PMRpro.

I just need to get through the bank holiday weekend here in England. I am on Omeprazole for stomach protection so may try increasing pred. My GP surgery is in the process of moving to new premises so no chance of an appointment until after the holiday weekend.

Thanks again.

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If it is too bad there is always 999 - it's even worse here - 2 public holidays last week on Monday and Thursday and one tomorrow. You can forget GP appointments!

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Oh Oxford, l’m so sorry to read this, GP’s given you the standard combination for pain, Co-Codamol/Ibuprofen, diazepam plus your pregabalin.

If this is not working l think you need to speak over the phone to the prescribing GP & let him know this combination is not working. There are other pain Meds some don’t suit everyone but l’m thinking you may be needing something stronger, l’m no fan of Tramadol as it makes me shaky but had great relief with slow release Morphine with Oromorph to top it up during the day if required.

You need help before the weekend & if you can’t cope until tomorrow the Out of Hours Service is pretty good if you can get someone to take you, otherwise ring your Surgery in the morning & ask to speak to the GP as a matter of Urgency.

Do you have a wheat pack or hot water bottle to soothe the area?

I’m just so sorry your in so much pain.

Thinking of You 🌷🌷🌷

MrsN xx

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Thank you Mrs N.

I have a wheat pack and, will try that tonight. I might go a d bang on the surgery doors tomorrow if it doesn't improve.

As ways it's good to know you're 'tgere'. It's a scary, lonely business but much less so with this great group. X

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You do need more advice & better Meds.

Also write down the times you take them so you can keep the doses accurate to obtain the best relief possible.

You can also stagger the doses so the Ibuprofen is between the Co-Codamol if you follow me.

Also they can prescribe Codeine separately so you can increase the dose.

Just watch your bowels with the Codeine/Morphine Type Meds!

Mrs N 🌷🌷🌷

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Thank you. X

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Hi oxford8, not nice. You need better pain control than co codamol. I would be asking for a phone back and ask dr to prescribe even something like nefopam which helped me pre surgery. Also, the dose of pregabalin could be increased if you tolerate it ok. Same with diazepam . Even if they gave you something for the weekend it would get you to the 8th. In my experience the pain is less after surgery. It's​ not the same nauseating, excruciating pain i am sure you are experiencing at the moment. If you can distract yourself, its a powerful thing but sometimes i am afraid you just need that surgery to come as quickly as possible. I was offered traction which sounded medieval to me but the surgery date came first. I am not even sure they do it now. Get into the most comfortable position you can find with your pillows and bedding. Even if its the floor. Hopefully with someone to pick you up! Keep your phone in your hand. A 999 call and they would help to get you up.

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🌷👍👍👍

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The pain you describe happened to me almost 4 years ago. It happened suddenly when I tapered off prednisone. I'm sorry you have this pain because it was one of the worst I have experienced.

Procedure: MRI SPINE LUMBAR WO CONTRAST (72148)

Indication: Radicular right leg pain with right foot drop, leg

weakness and loss of patellar reflex

L4-L5: Mild broad-based disc bulge and severe bilateral facet and

ligamentum flavum hypertrophy causing severe canal stenosis. Mild left

and severe right neuroforaminal narrowing.

Surgery was the only option given to me. They would have scheduled it urgently. The pain was so bad that I couldn't tolerate it so I took a large dose of prednisone. The dose was one that I knew was safe for me. It worked!!! My last medical advise was to let pain be the deciding factor whether or not to proceed with surgery --- still haven't had surgery.

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Thanks, Dadcue. You've given me lots to think about there and I 'm grateful.

👍

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Hi,

I have the same issue. I have had lumbar problems for last 30 years. It is from severe scoliosis of thoracic to lumbar region. I also have a complete loss of joint space for one vertebrae and 1 herniated and one bulging disks. But I did fine with high doses of Naproxyn until I had 2 emergency room visits to emergency room for gastritis. and later caused a skin blistering problem from interaction with sun, but did everything including a lot of exercising. When that type of situation flares, it's usually facetitis, or facet syndrome.

Then 2.5 years ago, diagnosed with PMR. At first, I could tell if it was PMR pain or pain referred by back. But now the two disorders have melted into each other; leaving quite a lot of total body pain.

Ask about an MRI to diagnose back problems; there is a procedure for that called "ablation" where inflamed nerves exiting affected vertebrae are burned or frozen off; done under local if you do have a facet problem is treatment result is temporary; lasted only 3 months for me.

I wouldn't let anyone to talk you into surgery. Many back surgeries leave pt. worse off with painful scar tissue left.. And of course, you already know that Prednisone is the mainstay of treatment.

So I agree with others that your situation must be managed with better med regimen, and maybe down the road, physical therapy. I have accepted it as a condition for life; my goal is to stay out of a wheelchair.Good luck getting care.

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Thank you Christopher. I really appreciate your response. 👍

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I have a lot of nerve damage in my sacral spine from a giant cyst on my spinal cord. I had successful surgery to remove it 9 years ago, but I was left with residual pain that flares up badly if I do too much sitting. I got PMR 2.5 to 3.5 years ago. If I don’t take enough prednisone, my pain flares into a combination of of PMR and pain from the nerve damage. I can’t tell which is which anymore. I feel very much like Christophene47.

Early on in my PMR history, my rheumatologist forced me to reduce quickly to 2 mg, in spite of PMR symptoms returning at around 5 mg. I had a horrible flare that included bladder and pelvic pain (not usually a PMR symptom), along with PMR pains. I was miserable for months. I had a spinal MRI that showed widespread inflammation throughout my lumbar spine, where I really don’t have much structural trouble. Doctors couldn’t really explain it. I think it was from my PMR flare. Anyway, I finally fired the rheumatologist and increased my prednisone to 7 mg where I had felt my PMR under control previously. My symptoms, including the pelvic and bladder pain resolved quickly.

Back surgery is permanent and comes with no guarantees. I would try the 15 or 20 mg first.

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Thank you Ciar. Really helpful. 👍👍🌷

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Good luck! I really feel for you, I think I know what you’re going through! Also, I forgot to say that I get a huge amount of pain relief from the nerve pain from ice, nothing else does much.

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Dear Oxford8.

You have my huge empathy for your pain and you naturally sound very anxious. Please get urgent help if you are in pain and any numbness in buttock, leg or foot, but also please don’t panic. I had exactly the same as you 30 years ago (I was only 31, living on my own in a flat in London, working full time with a mortgage to pay) and I was terrified. I could only crawl on my hands and knees at one point, the pain was horrendous and the anti-inflammatories made me sick!. Doctors (3 different GP’s) didn’t believe me when I said I thought I had a prolapsed disc!! Eventually, after much arguing with GP I got an X-Ray confirming my diagnosis -prolapsed L4 - L5 disc. 1 very sensible orthopaedic surgeon (didn’t operate), a brilliant physio, lots of ice packs, gentle exercises and rest later and after 3 months a steroid injection into my spine to mop up some residual nerve pain I was pain free and back at work and horse riding.

30 years on and if I overdo the gardening, over bending or heavy lifting, I get occasional twinges which I sort out with ice and Pilates.

Herniated discs are incredibly painful and take time to heal. The length of time depends on the size of the herniation and whether you’ve actually torn the cartilage material which surrounds the gelatinous material which fills the disc and protects the spinal cord. A small bulge or leak can still be incredibly painful as all the surrounding muscles go into spasm as well as the accompanying nerve pain if the bulge presses on the sciatic nerve.

Hopefully, you just have a bulge or small tear in the cartilage and not a full rupture and so surgery may not be necessary. My fingers are crossed for you.

A couple of helpful hints:-

An ice pack of crushed ice wrapped in a damp t-towel for no more than 20 minutes every few hours will help reduce the inflammation and numb the disc area.

Sleep on your side with a pillow between your knees and lower legs, or if on your back with a pillow under your knees.

Don’t lock your knees when you stand still, keep them soft and slightly bent.

Sit on a firm supportive chair with a small cushion or rolled up towel in the small of your back.

Don’t try and pick up anything heavier than a small kettle.

I hope you get yourself sorted out soon. I really do feel for you as it is soooo miserable and that’s without the problems of accompanying PMR.

Sending you lots of hugs. Xx

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Thanks so much Nerak 12.

So much helpful information and tips for managing.... and the virtual hugs greatly appreciated too.

🌷🌷👍🙂

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Hli again Mrs N.

Rocketman's post has given me pause for thought. I am panic-reacting and need to calm down.

I've put in a call to the surgery and a doctor will phone me today to discuss what is best to be done. I need to know that I will be covered for the Bank Holiday weekend.

Thank you all for your support.

X

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Morning Oxford

How are you feeling this morning? 🌷

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Morning Mrs. N.

Thanks for asking.

The pain seems to be pretty well everywhere so I have decided to up the pred substantially for a few days.

The analgesics and anti-inflamnatories are doing nothing so it is worth a try.

I've taken on board all the comments on here, and I honestly think that the inflammation from the lumbar spine problem has brought about a PMR flare.

We shall see.

x

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An Epidural steroid injection is what you should have ASAP. If successful, it will give you pain relief and the time to sort things out in a calm rational manner. I am going through the same thing with my lower back and had the epidural 3 weeks ago with considerable success.

Good luck !

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Thank you!

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Hello Oxford8 I'm sorry to read your post , you have my sympathy. Over 40 years ago I had fusion surgery for 2 prolapsed discs. I have continued to have back pain but I think the surgery did improve my condition- at the age of 25 my quality of life had been dreadful . Over the years I've had several different cocktails of epidural injections , some of which helped temporarily - one lasted 2 years - and some had no effect at all . Then 5 years ago I fell and fractured 2 more discs. The fractures didn't heal so after several months I had vertebroplasty which sorted out that problem but my original back pain was pretty ghastly . I was taking tramadol at the time. My orthopaedic surgeon said there was no more he could do and referred me to the pain clinic and I was tested to see if the ablation procedure Christopher47 mentions would be appropriate. I wasn't a suitable candidate and so the pain management consultant advised me to continue with the tramadol which works for me , fortunately.

If you want to avoid surgery then I'd ask to be referred to the pain clinic who can advise on epidural procedures ( as indeed , your surgeon can) and the best drugs to manage your pain.

My PMR was diagnosed in October 2018 . I started on 30 mgs and I'm tapering using Dorset Lady's taper - I'm down to 15 mg . Like all rheumys , mine is keen to get me off prednisone ASAP because he fears I might incur more spinal fractures in future and he's comfortable with me taking tramadol and paracetamol.

I do hope you find the best way forward to manage your pain.

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Thanks Katiemills. I Hope your journey gets better too. I appreciate very much your taking the time to post.

🌷

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I have no advice but to say that I am sorry that you are suffering and hope you find some relief ❤️

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Thank you bunnymom. 🌷

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Oh dear Oxford I do hope you can get some relief soon. You've received a lot of feedback, which I hope has been reassuring.

I too have back issues but NOTHING compared to what you're suffering. The advice I would give is similar to what Nerak provided, but all that will only help once you get the main problem and pain sorted out.

Best of luck.

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Thank you! 🌷

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