Chronic pain sufferer for 55 years!

[mojo1961]

Hello. I was born with a malformation of veins & nerves on my right foot. The pain has dogged me all my life & seemed to get worse when I was either tired or my foot was hot from having my sock & shoe on. It is also getting worse with age. I had countless visits to the Drs only to be told that I would eventually grow out of it. I finally managed to have an operation on it, via a consultant vascular surgeon, who simply debulked it, leaving me in absolute agony. I've also had a lamanectomy to repair a sciatic nerve & remove disks L5/S1 & S2 which has left me with chronic back pain & sciatica. I'm now using a 100mg Fentanyl Patch & I take 2x150 Lyrica, daily which does ease the pain, but I'm looking for a surgeon/clinic/anybody who can give me a permanent solution to this debilitating problem, so I can live a medication free life. Can anyone help me, please?

[RAYJAYC]

Oh mojo, I/we so wish we had the answer to that question both for you & all of us! Grasping out frantically is what we all do or have done from time to time I'm sure. It doesn't make sense that a part of our body can be so painful and yet there's no solution. With all the medical advances & research, you'd think they maight have gotten a little closer to finding that exact pain nerve pathway and close it down!!

Some people use medication, alternative therapies or nothing at all; they've given it all a try and have come up a blank in regard to finding a suitable and sustainable relief from their pain.

As you're looking to be medication free have you tried massage, acupuncture, yoga, pilates, stretching?

Do you see a physio for ideas and safe ways to stretch & strengthen specific areas? The exercises need to be continued at home quite strictly to get the benefit but the effort is 'sometimes' worth it!

Are you only on Fentanyl patches and Pregabalin? I know you want to be without drugs but sometimes it isn't possible; your Pregabalin is quite a low dose - generally 400/500mg a day is the therapeutic dose (max is 600mg a day).

Do you have access to a pain clinic? Have you been 'taught' any pain management techniques & strategies?

I know, so many questions but if we can get to know a little bit more about you, we'll be able to help a little bit more!

RJC

[Marylyn]

Mojo find yourself a holistic dr & ask for vitamin d & B12 serum & active ,folate,ferritin ,iron .MMA Your pain sounds neuropathic Drs will only treat symptons not vitamin deficiencies which can destroy nerves.Check vit b12 awareness.org to see devastating facts.It took me 15 Drs including 7 specialists ,2 brain& thyroid scans,battery of blood tests before 6 mths later a diligent GP nailed it in 2 visits.

[johnsmith]

There is no solution. There is only work and more work. You have to develop the means to study yourself. There are a variety of different tools available which take some time to learn.

There is yoga. This will put you in touch with your muscles and help you develop the means to lengthen out your muscles for better functioning. There are various forms of massage which will lengthen out shortened muscle.

There is mindfulness and meditation will help you investigate how you contribute to your experience of pain and hopefully develop the means to reduce your bad experience of pain.

There is Alexander Technique lessons which can help you see how poor muscle behaviour contributes to pain experience. The Alexander Technique lessons will hopefully show various means which will help you reduce the pain you experience.

Hope this helps.

[mojo1961]

Hello & many thanks for your helpful replies, concerns & advice. Much appreciated. It wasn't until I injured my back, playing rugby in 1987, that I was prescribed an effective painkiller, Buprenorhine (Sublingual) 200mg X 1 nightly, that I actually experienced enough relief, to be able to get some sleep. I was on Buprenorphine for 28years, until I was lucky enough to find a GP who listened to my dilemma & because my daily dose had crept up from x1 nightly, to 8 daily, I was being treated as an addict, instead of a chronic pain sufferer, so we worked together, before eventually finding a suitable & effective combination, in Fentalyn 100mg (change every 3 days) & Lyrica 150mg X 2 daily. I do feel as though I am right on the very limit here because, I've yet to have a patch last me the prescribed 72 hours & the pain breakthrough that I experience, again rears its ugly head, before the 2nd Lyrica pill is required. I've been a resident of Bronllys Pain Management centre, on 2 occasions & I have religiously practised the various pain relief methods, taught there. I've spent a fortune on a tens machine. I've been to Yoga classes & even Tai Chi classes. I've even taught myself Accupuncture. The latter, gives me some relief, whilst the needles are inserted, but the pain resumes, shortly after they are removed. I worry terribly, when my prescription requests are submitted, because, invariably, they are early, so I worry, in case the GP refuses to sign them. I worry about this, because it has happened previously. The last time, was on a weekend & consequently, I ended up in hospital, where I was treated, yet again, like an addict. In between all this, I've been having every treatment under the sun, from the pain management clinic, resulting in a Nerve block injection, every 3-4 months, all to no avail. I want an end to all this now. It's been 55 years of hell, for me & my Family. I didn't ask to be like this.

Also, 3 years ago, I collapsed at home & spent a week in the Cardio ward at the local hospital, where I was diagnosed with Severe Dilated CardioMyopathy & Angina, which confusingly, they say I've had since birth? What more can happen to me! Only that work has made me redundant, because the Drs have said that I can't work anymore & now the esa has run out after a year, so no money coming in. Can life get any worse for me? What's the point.

[RAYJAYC in reply to mojo1961]

ESA doesn't finish at the end of 12 months - you have an assessment to determine whether you should move onto 'income related ESA' and get put into the Support Group or Work Related Group OR if they find you fit for work, then you go onto Job Seekers Allowance.

The twelve months ESA you've been getting is 'contribution based' and that can only be paid for a year. Do you have anyone that can help you with this? If not, either call Jobcentre Plus (who have been dealing with your ESA) or go and see your local Citizens Advice Bureau for a full explanation.

Plus, you can claim for PIP; you can't be left without any income!

Regarding the medication; I think maybe you should ask for your Pregabalin (Lyrica) to be increased. Your dose is very low and it's not classed as one that can be addictive or misused. It sounds like you need to discuss some breakthrough pain medication with your GP too. Do you take Paracetamol? Can you take Ibuprofen?

I understand your history of being accused of being an addiction but your GP May consider something a little stronger for when the pain gets even worse? Even if he/she only gives you 5 or 6, at least you'll know if it's hitting the spot!

Don't give up; there are lots of people on here who you can communicate with and get hints, tips, advice & support!!

RJC

[RibvanRey]

Hi Mojo, my life changing injuries led me through a whole recipe book of treatments, therapies and pain meds. I too ended up using Fentanyl 100 patches which would seldom stay on for 72 hr let alone provide adequate assistance in easing my pain. After a lucky change of doctor my patches were replaced with a slow release capsule. It is like a cluster bomb with dozens of little pills inside. Pin head sized. With different thickness coatings I believe. I take 1 every 12 hours. They work far better than the patches.

Patches are always suspect. The adhesive doesn't suit everyone's skin. Different skin absorbs at different rates. Then the temperature and activity all alter the way patches work. All these things are bypassed by MST.

If you feel that you do still need meds to help then as your Doc about swapping to 100mg MST. It is a strength for strength replacement. No need to wean down or adjust up. Just stop the patch the next change day and take a capsule instead. Don't mix. Morphine Sulphate Tablets replace Fentanyl patches or visa versa.

I cannot say that this will suit you as I am not your doctor. You may have other health issues or meds that would clash. Go have a chat, and good luck Mojo.

Regards, Rib

[Jenharri]

I do feel for you suffering chronic pain like that.

I am in a similar position chronic pain from L4:L5 compressed disc & L5:S1 causing severe sciatica. I do have widespread arthritis & also suffer from psoriasis. I have tried many meds with no luck, I have had an Epidural Block & 2 ESI in the lumber spine to help severe stenosis pinching sciatic nerves this had worked up to a point as I don't have the numbness, pins & needles pain in my left leg. I am still left with severe pain in my lumber region right buttock & thigh.

My doctor decided to try the Butrans patch as Fentynal made me very sick. Tried 5mcs first not much help just a little. Now on 10mcs with Ibuprofen 400 & Cocodamol for breakthrough pain. So far this is by far the best pain relief I have had. The only thing I would say is the patch unfortunately does not last the full 7 days loses its strength by day 5-6 that's when I need my usual meds.

Surgeon wants another MRI done but I really do not want to go that route. As with yourself those ops aren't always successful.

I'm seeing the doctor that did my Epidural's in the autumn but at the moment I am coping without having any invasive treatment.

I very much understand how you feel as I have been in the same boat and would do anything to get out of this wretched pain it rules your life completely & limits what you can do. At least now I can make plans but must not overdo it because the devil will raise its ugly head.

Sorry I can't be of any help other than say you are not alone.

Take care

[RibvanRey]

Thank you Daniel.

The GP who prescribed the MST did so on his first examination.

I changed doctors surgery. Not really a lower dose. Just achieved in a different combination. I was not getting a uniform dose from the <100microgram Fentanyl so it was replaced with 100mg MST caps plus Oramorph and Diazepam increase.

It is good practice to change opiates regularly apparently. Something that I find hard to believe with a degenerative condition and only two changes in 30 odd years.

Main thing is my pain is better managed now. Plus I have a GP who appears to have far better grounding in modern medicine.

[RAYJAYC]

No worries Daniel, I stand corrected; the poster has eluded to having an 'issue' with Buprenorphine in the past in that they 'ended up on eight a day' instead of the prescribed one.

I was trying to suggest a less/non stereotypical 'misuse' drug but if Pregabalin now sits in within a high risk category then I apologise to the original poster. The prescribing doctor would obviously make a judgement call on whether mojo was at risk from 'addiction' from his/her history anyways but I accept I may have built up false hope.

I've heard whispers (it may of course be common knowledge now but as I'm 'out of the loop' mostly by not being at work, I'm probably way behind!) that there are consultations going on about making Pregabalin & Gabapentin controlled drugs. Yet another hoop to jump through!!

RJC

[RAYJAYC]

I don't know if there's any definitive evidence to say that changing opiates is good practice but my GP & pain doctors all say that changing from one type to another can be beneficial. It's all to do with tolerance build up to one so having another can 'break that cycle' and kick start the effects of another.

I certainly found it beneficial; used Fentanyl patches for 18 months then had six months on Zomorph, then went back to the Fentanyl. There was a definite 'change' in pain relief once I went back onto the Fentanyl.

I suppose different doctors will have different views & attitudes on this but I'd say it's worth trying something different. Obviously, if your pain is stable, albeit horrendous at times, then staying on 'your type' is just as acceptable.

RJC

[mojo1961]

Hello & many thanks for the advice etc. Much appreciated. My GP put me on Duloxetine 30mg x 1 daily for 2 weeks, then up to 60mg x 2 daily. I've had to reduce the Sertraline by 1 daily to incorporate this new drug, so fingers crossed. I'm contemplating buying one of those Accupens, so I can locate the pressure points more accurately. Opinions please???