How’s everyone doing?
It’s 1.30am in the UK & so far no sleep & it’s really driving me crazy if I had a sharp knife 🔪 I’d happily chop my legs off I really don’t know how much more I can take. I’ve tried every drug going & I'm now using Buprenorphine patches this is my second week & my legs just seem worse. Has anyone had any relief from using these?
Take care everyone x
Hello, it's really sad to hear of your continuing suffering.
Your case is quite complicated and I note that you have tried a lot of different medications, apparently for RLS, and none of them worked.
I see you recently started on the patches and these don't appear to be working.
Opioids are recommended for RLS if all else has failed.
You've not really described in detail your symptoms, but have mentioned pain, and of course sleeplessness.
I did say to you before that you possibly don't have RLS, or if you do, it's not your main issue. If the treatment you're getting is solely aimed at RLS, then this might explain why nothing works.
You mention a few health issues you have which would explain why you might have pain in your legs. Perhaps you have it in the day, but it's worse at night. Pain does seem worse at night.
I see you have had nerve conduction tests which found nothing. You also mention spinal problems. I have degeneration in my spine and I had an MRI in 2017 and more recently a bone scan. Both showed where the degeneration was and the MRI showed the worst place to be the gap between Lumbar vertebrae 4 and 5. Sure enough the pain I get in my legs corresponds to the distribution of the nerves which enter the spine at that level.
When the pain was at it's worse last year, I started on Gabapentin, Codeine Phosphate when I needed it, but significantly an anti-inflammatory, Naproxen, for 2 months. I think if that hadn't worked, the next step might have been steroid injection.
The opioid, Codeine Phosphate had no effect on the pain at all. The Gabapentin, I believe, helped. I still take a maintenance dose of Gabapentin which also controls my RLS, which I definitely have.
I believe it was the Naproxen that made the real difference. I also saw an osteopath and had acupuncture which aided recovery. A physiotherapist taught me some exercises.
Obviously, I'm not a doctor and I can't diagnose, but I would say that if you've tried everything for RLS and nothing worked, then your main issue is probably something else, possibly neuropathy which may not show up on nerve conduction tests. Nerve conduction tests tell if a nerve isn't working, if you have pain then the nerve is working.
I can imagine that this issue, failed treatment, pain insomnia etc is causing you considerable distress. So on top of all the physical issues you are having mental health issues which will be exacerbating your symptoms.
I appreciate that sometimes it can be quite difficult to keep going back to a doctor who perhaps fixates on the wrong diagnosis and continues to prescribe increasingly extreme treatments that don't work. I experienced that fifteen years ago and it was only after persuading my GP to refer me to a different specialist that I got the real diagnosis. I also got totally different but more appropriate treatment, which worked.
Maybe it's anti- inflammatory treatment you need instead of or as well as analgesics and possibly a nerve desensitiser e.g. Gabapentin.
If you really don't have RLS then an SSRI or Tricyclic antidepressant may help. Amitriptyline can help relieve anxiety, lift mood but also can help relieve chronic pain due to neuropathy or joint conditions. Even if you do have RLS the benefits msy still outweigh the costs.
You could try an osteopath. About £50 for an assessment and £40 for treatment sessions
That's all I can suggest you try to do.
Unfortunately, mental health services are pretty dire, but I think you might also benefit from.some psychological therapy that helps you cope with your situation. This might be a chronic pain clinic. Sadly, I don't know what services are available where you live and how long the waiting list is. Some places have an IAPT service, (Immediate Access to Psychological Therapy) which could be used in the meantime.
I'm sorry I can't think.of anything else, practically, to help. It upsets me to hear of people's suffering and I feel frustrated when I can't do anything about it and angry that it should be happening to people that don't deserve it.
I see it's been a long hard trail for you, I hope you get relief soon.
Thank you for your very interesting information & for your kind words all of which are very much appreciated.
I’m waiting on an appointment to see my consultant again & in the meantime I’ve been doing my own research into a near fatal illness I had when very young which has left me with all my complex problems.
Post Polio Syndrome has been mentioned many times but not really taken note of & all my symptoms point to that but it’s a condition very much like RLS but has never been recognised so I’m on a mission to get myself heard& believe me I’m not one to give up.
I’m so sorry you are suffering so much with RLS.
I happened upon your response to someone’s post in which you mentioned you were taking an anti depressant.
Most anti depressants worsen RLS so that could be why the opioid patch isn’t helping.
I know this horrible disease causes depression so understand why you need help but, if possible could you discuss alternatives that don’t worsen RLS? Wellbutrin and Trazodone are 2 possibilities or the occasional diazepam for anxiety.
Also check that you’re not taking any other meds that worsen RLS, like cough medication or anti histamines.
Finally, get your blood results and ensure Serum ferritin is above 100 and serum iron above 60.
I assume you have been on dopamine agonists at some point and gone through withdrawal- if that was recently, it can take some months for withdrawal symptoms to settle.
I really hope you manage to find an anti depressant that works and doesn’t worsen your RLS.
Thank you for your kind words & comments very much appreciated.
I had blood tests & all results are normal & am waiting to see my consultant again & whilst waiting I’ve done my own research & am now convinced I have Post Polio Syndrome caused by a near fatal illness as a very young child.
I have so many problems it’s no wonder it’s hard to find something that can help me.
It must be confusing that Jools and I have given you almost opposite suggestions e.g. as regards antidepressants.
The reason is that Jools suggestions are perfectly appropriate if your main problem is RLS.
Mine are really only appropriate if your main problem is NOT RLS.
It does appear as if your main symptom ( which seems to be pain) is not the defining symptom.of RLS (the urge to move) with or without accompanying pain.
You have multiple possible causes of pain/neurological symptoms and agree you are quite right to research these.
I agree with Manerva- it does seem that there are more issues than RLS- I hope you can find out what is happening & that you can find something that will help.
New to this condition 
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