Hi,

I am looking for some advice or others experiences of scs and what I should expect or what is normal.

My potted history;

Started about 20 years ago with neck pain, MRI should the disc at c6-7 was bulging but not bad enough to do anything about. They also found a dehydrated disc in my lower back. Years of neck pain followed and when bad I would not be able to move my head properly so it put pressure on my back and I had lower back pain.

About 10 years ago my neck was really bad and was struggling with pain etc. I then got a frozen shoulder on my left side which is where the pain was. That did not respond to steroid injections so had to have it decompressed.

A couple of years later the pain continued and I ended up with chronic pins and needles 24x7 on both arms but mainly the left. Again my neck was playing up. This time they did conductivity tests and told me both ulna nerves were compressed and I needed a ulna nerve transposition in my left side first as this was worse. This I think was the first time crps started and was not a compressed ulna nerve. Had the op and no better. The crps got worse, red, swelling, burning pain at shoulder, elbow and fingers both little and ring fingers. Tried nerve blocks, infusions, various tablets and eventually ended up on lyrical 800-900mg per day. This lasted for two years but the side effects were bad and it came to a head when I forgot the tablets when away from home and after 24 hours started withdrawal. So planned to come off tablets, little support from my doctor, he said half them over 2 weeks and at the end of the third stop them. Did this and ended up suicidal (now my doctor says that they don't prescribe them anymore). Got over that but the crps came back worse. Tried to tough it out but neck pain and crps to bad. The consultant then says the MRI is showing the bulge at the back of the neck but it is the channel where the nerves pass that is restricted to less then half the size of all other joints. So he suggested replacing the disc. Well that went well for 8 weeks then out of nowhere the pain returned and I thought I would be paralysed. New MRI shows the replacement joint had failed in the back corner and was pushing down on the nerves. He said he has never had one fail but it needed taking out and fusing. Fusion done and neck pain eventually gone!

The crps was still there and as bad as ever. So I had scs precision spectra with 16 pads on my left and 8 on right. 5 different programs 3 I can feel and 2 can't (whisper and burst). After a week it felt very good but over time as I am more mobile I noticed the pain coming back. The redness, swelling and pain at shoulder, elbow and fingers is back as soon as I walk or use my arm. Also if I switch it off then the pain returns in minutes. I also get no relief from the whisper and burst programs. It seems if I can't feel it then it gives no relief.

I'm due to see the consultant in September but I am unsure of what I should be expecting. I think I have had crps for around 8 years and I am seriously feed up with it. I am not fit to work and only pain free when sat down doing nothing.

Any thoughts on what I should be doing or expect from the scs?

Paul.

Frozen shoulder is basically the one and the same as CRPS. Some doctors do not agree on this general issue, others do.

A neurostimulator is no cure for the signs & symptoms of CRPS, it can only generally help with the pain. So you need treatment.

What does your doctor say of all this?

The response I have had is that there was 3 courses of action, tablets which I really want to avoid after my issues with lyrica, infusions or blocks which I have had before and were very short term fix if they worked at all or scs as a pain management treatment. He has said there is no cure and that it is especially hard to manage as it has been going on so long. He classed it as crps type 2 which he said was as a result of nerve damage.

Regards

Paul

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Maybe ask if there are other anti-seizure meds besides Lyrica that s/he can recommend if you react poorly to the Lyrica.

I have been on Neurontin (anti-seizure med) since 2004, and they tried to switch me to Lyrica at one point. But I reacted really really badly to the Lyrica, so back to the Neurontin it was. There wasn't anything wrong with the Neurontin at the time and in the first place, but the neurologist said that Lyrica was "newer" and would be better. Well, like hell it was!

HTH!

I think I will have to. I have previously tried various tablets but I need something to get a quality of life back.

Thank you.

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Lyrica is awful. I personally don't know anyone who has managed to take it. Gabapentin on the other hand is much easier to manage to take. When they altered the main drug (its in the same class) to come up with Lyrica, I don't know what they did, but yuck. Plus now they say Lyrica doesn't work.

There are many other possible medications that can help, but more important is to do physical therapy and desensitization to help "re-train" the brain and improve functionality for long term use of your body.

To be honest I did not originally make the connection that neurontin was gabapentin until I googled it earlier. I have previously tried it and got very little relief. I only got relief from lyrica when they upped the dosage. I am fearful of both drugs due to the side effects. In the UK I read on a .gov website that they are looking to make both drugs class c as they are being abused especially in prisons. Regardless I had such a bad time before and I am here today because my manager put me in touch with a counsellor just in time. One more day and that would have been it.

The problem I have had with physio is that it reacts badly to movement and on two occasions I have fainted due to the pain causing my blood pressure to drop when I get this feeling of blood running the length of my arm.

I am trying to stay positive I haven't had all these ops to give up now. I suppose as time goes by I can't help feel the options are becoming limited.

I will beat this.

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Yeah, I'm talking about specialized PT. Which is clearly hard to come by. So if that movement is bad, then you wouldn't be doing it, you would be doing JUST less than that. But also, what I'm doing is working a lot on the desensitization which is pretty huge. Its going to be a very long slow process. So whatever I'm touching with my foot I only touch for say ten seconds at a time, and only after first experiencing it with my left (unaffected) foot first so that my brain knows it is "safe" etc.
Its a pretty careful process.

I've read about neurontin/gabapentin being abused and I honestly don't see how/why. I certainly don't get any "high" from it.

There are other meds. There are some antidepressants that also work on nerve pains. There is methadone, which is helping me. It is an opioid but it works on the nmda receptors so it is more effective than the other ones.

And there's things like the Ketamine infusions, which others here do and can talk more to than I can.

I don't think that that is what's meant by "abuse". In the US it has undergone a whole controversy because it was the new "aspirine", as it was being prescribed so much, so often. So that's what they mean by it.

It is a very safe, very effective medication for nerve pain, IMMHO. And so high trees catch a lot of wind... That's how it usually goes!

It's only being refunded in my country for the last 5+ years or so. Lyrica got on the market here first and was even refunded before Neurontin was (but it didn't take that long). Before that I had to pay full price for the medication (€40+ euro a box and that lasted me 10 days, so you can imagine). Now I have to pay under €4 a box, so *big* improvement.

I've been very good with Neurontin. It works wonders on the nerve pain (the ICYness OMG). The remainder of the pain is dealt with with pain patches as I'm on the second largest dose of Neurontin. The doctor didn't want me on the highest dose, so that I still would have some leeway should things ever get even worse than they are.