I have Lupus, severe Raynaud's and a long history of secondary erythromelalgia of my feet. It has got steadily worse over the last few years and the persistent effects are now deemed to be ischaemia reperfusion injury.
It is much worse when the weather is hot or I have been walking any distance. My feet are hot, red and swollen (sometimes up to my calves) and the tingling and burning are so painful that I could (and sometimes do) scream. I often cannot bear to wear any closed shoes, so I walk around barefoot most of the time. This has meant that it's sometimes impossible to leave the house. My sleep is badly disrupted. I find it difficult to get to sleep and am always awoken after an hour by the unbearable pain, burning and tingling in my feet.
I take 450mg Pregabalin over 24 hours. as well as 50mg Losartan (for Raynaud's),180mg Fexofenadine at night, and 200mg Hydroxychloroquine twice daily. I started taking Sildenafil 25mg every night a couple of months ago and have recently increased that to 25mg twice daily. I understand that the dose can be significantly increased; even though it's off licence for severe Raynaud's, it is quite frequently prescribed and has been put on the amber list now for GP prescribing. I haven't noticed any benefit on my current dose and I've been advised tby my rheumatologist to increase it slowly to see if that gives any noticeable benefit.
I was referred to the Pain Clinic and last week, the consultant outlined several options open to me and invited me to contact her once I'd decided which one I would like to try., assuming that Sildenafil wasn't effective, even at a much higher dose.
The options included Lignocaine infusions and I'd like to know if anyone has found any lasting benefit from these?
Another option and I presume this would be if the Lignocaine didn't help, is a sympathetic nerve block, using pulsed radiofrequency ablation. This sounds very daunting: my feet may be terribly painful most of the time but I'd be wary of having no feeling in them at all...Again, has anyone been forced to go down this route and has it got rid of the terrible pain of the ischaemia reperfusion?
I'd be very grateful to hear from anyone who has tried these treatments. Thank you.
Tess
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skylark15
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Hi Skylark. Yes. I have 2 lidocaine infusions a year for severe EM. I understand everything that you have said in your post and completely understand the severity of EM pain. Some call it "suicide pain." It's so much worse in this heat. Prior to getting it I couldn't have imagined that this level of pain was possible.
I am flaring at the moment from covjd jab so please allow me to be brief but I will try to be helpful
1. Lidocaine infusions help my EM for 3-6 months.
2. Lidocaine infusions do make me feel unwell for about 4 weeks afterwards but that is probably because I have an underlying condition called POTS syndrome.
3. The day you have the infusion and the following day you can feel headachey, flu like symptoms, chills (I need a hot water bottle), lethargy and a bit if nausea and some tummy upset. But as an individual I am EXTREMELY chemically sensitive to medications so this might not happen to you.
4. Once I have got over the side effects (which you may not get), I get some of my life back. It has a tremendous effect on my EM, my neuropathic pain and my joints and muscles.
5. Conclusion: for me a lidocaine is a love/hate relationship. It's not an unpleasant procedure to have but for me it comes with side effects. However bad the side effects the benefits DO outweigh the cost for me.
6. It allowed me to do things and move in a way that I can't normally.
People comment on how different I am.
My last infusion was Sept 2020. I am well over due one and am booked in for August.
My advice would be to go for it. If it works then it can be a lifestyle changer. You might feel crappy for a few days after it it's worth the pay off. Make sure you have someone staying with you overnight. Keep hydrated afterwards. Also, I do a load of washing and batch cooking so that I don't have any chores to do after my infusion and don't need to cook because I am often a bit fatigued.
Initially after the infusion my appetite is poor and all I want is chicken broth.
That's my experience anyway. In total I have had 4 infusions. Please feel free to PM me if you need further details. Migraine is preventing me writing more.
This is really nice to know. Thanks for sharing this scroll of lidocaine knowledge HT. I’ve never seen lidocaine used that way and wonder if it’s because it’s not approved in the US for this purpose. Wonderful to add another notch to my HU Lessons belt. Any good articles/literature to share? I’d love to learn more.
Hi J,Unfortunately I don't have any papers to share that I think are of any benefit.
What I can tell you is that many patients with fibromyalgia were having lidocaine infusions for chronic pain but in the past 2-3 years many health authorities are stopping them. The reason for this is that there is no evidence that it actually works.
It's incredibly short sighted in my opinion. Does patient experience not count for anything? I am lucky so far in that I am able to have these infusions but I am well aware that the option may be removed at any time. And it's no picnic having one of these infusions so I wouldn't put myself through it unless it was really going to benefit me. I am very lucky with my pain consultant.
I have them special for EM and they work. So for now I am just hoping and praying that they can continue.
If I ever find any useful info then I will share it. I did a fair bit of research before my first one and couldn't come up with anything useful.
Dear HT, Thank you so much for this comprehensive and encouraging response to my question.
I'm sorry you're feeling so unwell at the moment. I used to have migraine-with-aura but nowadays, I only get the aura. Weird but nowhere near as bad as the full blown migraine. You have my sympathy.
What you've written will help inform my decision, when I contact the consultant. I shall give Sildenafil on an up-titrated dose a proper trial first, though, before asking for an infusion of Lignocaine.
I would be prepared to grit my teeth through any unpleasant side effects: nothing could be much worse than the nightly full-on flares of EM, which I've learned is ischaemia reperfusion pain.
The first mention of this that I heard was from our own, wonderful Barnclown. I saw my rheumy a few weeks later and she just kind of casually agreed that's what it is...
Thanks again for your helpful and clear response., HT. It has given me a glimmer of hope.
I hope your migraine settles and that you continue to get relief from the Lignocaine infusions.
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