Update on my severe lower back pain

Hi guys. I have tested my meds over the last four days and found that 60mg of OxyContin keeps my pain at a level that is ok. I'm not pain free and if I do any tasks around my home, it's painful and I often need 20mg instant release oxycodone on top to cope with any flare ups and then get back in bed.

This is far from a regular life but I'm just grateful to be out of agony! I thank you all for your support while I struggle to cope.

My hope is this is just a period of crisis that will settle down. When this all started 3 years ago, the pain was like this. My MRI was normal and a year of physio didn't help much. The pain was under control for a good two years. The last year has been harder and now I'm at this place.

Day five update: the 60mg is keeping me stable but is not enough for me to get on with daily tasks. I can't stand in one place for long and I'm even scared to chuck out my garbage!

Have any of you had a severe flare up that has lasted 4-6 weeks?

UPDATE: 8 weeks later. This was not a flare up. It has become my new pain level.

[Bananas5]

Have you tried Oxynorm for the breakthrough?

x

[Hidden in reply to Bananas5]

Hi. I have both. OxyContin 30 mg for 12 hours (I need both 12 hour doses to make 60mg a day) and I have two times oxycodone 20mg for BT pain. Plus, 600 mg of tramadol on top if I'm really in trouble. Thank you.

[MalcolmCClark]

Yes it happens and the meds will lose effectiveness. I had to be switched to Zomorph because the oxycontin was no longer as effective. Use the drugs correctly and they do help. Keep positive

[Hidden in reply to MalcolmCClark]

I'm having bad time,I did not think that this is my new normal pain level. I can't cope with this. I'm disabled now..and scared to pick up my garbage because of my back. Did you ever have a flare up that was really severe that just lasted a while?

[Manditts]

I was on 80 mg of oxycontin and 20 mg for breakthru pain and it worked really well for me,until,the pain drs in Perth Australia atopped perscribing these types of opiuts.I tolerated them well,functioned fine and was the best i could possibly be.Under no circumstance will they perscribe these again.They dont seem to care at all how it helped me.Apparantly they go on the studies from America,apparantly.Good luck and i wish you all the best.😶😷

[Hidden in reply to Manditts]

How do you cope now then?

[Manditts]

My last flare up lasted a week,i was hospitalized and only given panamax for the first 2 days as it was a weekend when i had the episode and they said they couldnt speak to the drs at the pain clinic until the Monday.Worse week ever.I wanted to die.Panamx and iboprufen,what a joke.I was given fentanyl thru an iv in the ambulance.It was the worse pain ide ever experienced and i pray i never go through another episode like that.I pray noone else does either.

[Hidden in reply to Manditts]

You poor thing. I know how you feel. When my pain started 3 years ago - it got bad really fast. I went to A and E. They treated me like a drug addict and gave me nothing! I sat there and was crying my eyes out. I thought it was over but to get the level on pain relief I needed,my own dr made me wait weeks trying all these silly low pain meds.

I said why did you do that? He said, we have to know that it's real! My fear now is it could happen all over again as I need to put my dose up.

[Manditts]

Im in Australia and they dont have a clue in regards to chronic back pain.The last time i had oxycontin was about 7years ago,they just dont care.I tried so many other bullshit meds,theres too many to remember.Too many steroid injections,rhizotomies,took me 24 yrs to see the neurosurgeon who done nothing short of a miracle.I still get lower back pain but i can live with this.It used to take me 42minutes to get out of bed,an absolute nightmare it was.I can only pray it never gets back to how bad it was before.

[Hidden in reply to Manditts]

They spoke about shots for my back too. When I was asked I said hell no. Now, I would do it because I would rather die than live with this pain. Sending you positive vibes. Stay well.

[Manditts]

I think i have been a crash test dummy for all these injections in the spine,unfortunately none of them worked for me,but you may get some relief,anything is worth trying when you are desperate for a bit of time pain free.Keep ur chin up.☺😷

[Hidden in reply to Manditts]

That's why i never took them! I read about it. However, it may be part of getting the next level of pain care. They need to know you are 'that' serious. It's life and death man. Have a good week.

[Manditts in reply to Hidden]

True that,take care😊

[Coastwalker]

Hi JakeFukk,

Consider having a vitamin D blood test to see if you are low or deficient in vitamin D maybe ? Taking a high safe dose of vitamin D3 cured my lower back pain almost over night and many other pains too. Lower back pain can be linked to low or deficient vitamin D.

85% of us in Uk are either low or deficient in vitamin D, I was and did not realize it.

Vitamin D is the sunshine vitamin.

[Hidden in reply to Coastwalker]

Thanks. I'm aware of vit D and you have good grounds to suggest it as I do not get enough sun. I have been looking at using a stand up tan bed for 2 mins each month. The research I did says we all need 10-20 mins of mid day sun to get the right levels. Most of us don't get that as we wait till the sun is lower and it's just not the same. Lack of sun causes more severe forms of cancers than too much of it!

[Coastwalker in reply to Hidden]

Yes agree JakeFukk, that lack of sun causes all sorts of ills. vitamindcouncil.com is the top site for information on the many illnesses vitamin D3 helps and high safe doses to take. Have you considered visiting a chiropractor, they are good at back pain ? Just a thought.

[Hidden in reply to Coastwalker]

Hi. I did the tests and all was clear. I take vit D in a spray each day. Not sure about how it helps pain levels. I see no change but I know it's vital for my long term health. Thanks for reminding me to get it. Sending you positive vibes.

[Coastwalker]

Good you are aware JakeFukk.

[Hidden in reply to Coastwalker]

Thanks. You reminded me and I’ve not even been to the tan place! I must do it. Hope you are ell.

[Hidden]

It was not just a bad period. This has become my new level of pain and

I don’t know how much more I can take.

[Hartleyhare2]

Hiya, my main issues are fibro, insulin dependent diabities and Restless Leg Syndrome with only some back twitches now. However,twenty years ago I was in daily agony from lower back pain even sitting to go to No 2 would exhaust me. After a year of physio I was out for a meal for my mums birthday and couldn't even sit down. I colllapsed and was taken to hospital where I finally agreed to key hole surgery. The next day I was like a new man and presented with a jar of small pink bits! The difference is the drugs weren't working but I knew what was wrong. I had three crushed vertebrae slightly higher up that were causing the pain. I had several MRIs before they determined exactly where it was. I was terrified of having my back operated on but so glad I did. Can you get them to do some more exploratory work to find out what is causing you this life affecting disability?

You probably know this but always bend with your knees, never your back!

Best wishes Patrick

[Hidden in reply to Hartleyhare2]

Hey Patrick. It was my Phyc who I see for my bipolar who suggested I had more tests actually. He’s a neurologist too, so...I guess I’m lucky. I must write this down and get these test performed. The MRI show nothing but that was three years ago and in only one position. Thanks for the support, it means much to me right now. Be well.

[Hartleyhare2 in reply to Hidden]

Hi Jake. I'm afraid in this day and age we have to manage our own care within the NHS and push things forward ourselves. It was my endocrologist for my diabities that hassled the Rhumetologist to stop delaying and diagnose my Fibromygelia! Perhaps your Psyc could pave a way forward. Also if you ask your GP they have a duty of care to refer you to the Specialist Pain Team at the hospital, they may be a good starting point or physio. My partner is a specialist ICU nurse and the cut backs and delays are enormous now. Try and turn your pain and desperation into action and getting help. No one should be left in your situation. Chat anytime my friend. Bright Blessings.

[Hidden in reply to Hartleyhare2]

Hi my GP did send me to physio for a year. I had tried one person and then went to another. It helped as it reduced anxiety because of the massage and talking. But it didn’t last longer than the day. I see it had a soothing effect but didn’t reduce the pain. I haven’t got any better. I tried to keep doing the movements at home for 2 months but I didn’t see much change and it was always painful. I hated doing it. I still do, if I try.

My posture is very bad now and I find it a real effort just to stand up straight. I know it’s related because I was always warned to hold myself up right from being young.

My dr did suggest the pain clinic before xmas but put my meds up before we tried that. I would have gone actually. My fear is the pain clinic will ‘take over’ and reduce my meds not understanding how much pain I’m really in....and I will be left in agony!

This is my biggest fear or I would have pushed for the pain clinic right away.

Regards.

[Hartleyhare2 in reply to Hidden]

It is a genuine concern with the pain clinic, I have heard them do it to lots of people myself included. Fortunately I have a good GP who is happy to prescribe what I need, we have a good level of trust over 20 years and he does the whole family. Fortunately he ignored their advice!

I didn't find physio very useful especially things like the Tens machine. The only two movements done gently that helped where firstly, lay on my back, gently bring knees up together, wrap arms around knees and gently rock. The second to lay down on front, keep hips and legs glued to floor and slowly push up with arms. Sort of a half press up. These helped me but might be might be totally unsuitable for you so go steady. I still think getting a referral back to hospital for further investigation is a must. I also found Diazipam very helpful as it relaxed the tightened muscles around pain area in back. A fairly common practice but you will obviously have to check any interaction with any other Meds.

Best wishes

[Hidden in reply to Hartleyhare2]

Thank you for the positive vibe. My pain is better today. But I'm motivated to get these tests done and done the but D first. I, like you, also have. A good GP and I think that's why I was able to get the high dose and stick with him for 3 years before he talked about the pain clinic. Have a great week.

[Coastwalker in reply to Hidden]

Can you afford to see a chiropractor if you have posture problems ?

Also Bipolar, anxiety and fibro type pains are linked to B12 deficiency.