I've just read the post from jimandgil about pain in the groin and legs and didn't want to hijack his post so will start from scratch. I have been having severe pain in my legs very much like one would describe if one had the flu. I have had similar before and it's been a side effect of some medications- diabetic ones and cholesterol ones, and it's been described as fibromyalgia at one point. Going off the medications has meant the pain has gone.
I'm currently on tramadol, Neupro patches- (rotigotine) a 2 mg patch which I use only half at a time by not taking the plastic backing off one half and after 36 hours (rather than the advised 24), remove the patch, take the 'new' side plastic off, and stick it back on. That, along with 1mg clonazepam is controlling my RL and I'm finally getting some quality sleep. Clonazepam on it's own did nothing except make me into a zombie that was still awake all night and the patch on it's own still left me wakeful and not soundly sleeping.
I've come off pramipexole, baclofen and gabapentin since February so now am on a far simpler regime. Funnily enough, my legs didn't get worse without the gabapentin (2800mg/day in two doses), and of course once the augmentation and withdrawal from the pramipexole was finished, my legs were much better. However, on nothing, I was having RL all night and no sleep so desperate for something. I tried opioids but even at the highest dose, they didn't work, and fentanyl patch the same. I am scared thought that I will augment on the Neupro patch being another dopamine agonist, but am not going to increase the dose and will take drug holidays to try to circumvent that.
I'm also on week 6 of the mindfulness meditation course and I know that it helps, certainly with relaxation, anxiety and facing my 'fear' of my RL and the secondary suffering which RL involves.
Does anyone have any ideas about the leg pain- it is all consuming and I need to take the tramadol to get rid of it. It's definitely not RL but I do wonder if it might be connected to the three drugs I'm taking???
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restlessstoz
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I'm pleased to hear your mindfulness course is going well.
As for the pain in the legs, I basically don't have a clue!
Pain is usually due to an issue with nerves, muscles, inflammation or circulation.
although they all have effects on each other, it sounds as though inflammation is not your issue and it doesn't sound as if it's circulatory.
That leaves muscles or nerves.
Fibromyalgia is neuromuscular, very hard to diagnose. Diagnosis depends I believe on finding "trigger points". For the diagnosis, there has to be several of these on both sides of the body.
Unfortunately, it's not always easy to differentiate between nerve pain and muscle pain. I recently saw an osteopath for treatment of nerve pain. He used manipulation and acupuncture and it definitely worked on most of my pain. However I had pain in my groin and inner thigh and it did not work on that. He said it was probably muscular. However, I later saw a physiotherapist and she thought it was nerve pain.
If it muscular pain, it may be fairly constant, worse when you use the muscle and tender when you press on it. The pain is usually a dull, rather than a sharp pain.
Nerve pain can be similar, hut may also be accompanied by pins and needles or numbness. I get a buzzing sensation. Sometimes I get a sharp stabbing pain.
I'm not aware of any medication that causes pain in the legs specifically. It may or may not have been coincidental or due to effects on nerves or circulation.
Thanks Manerva. It's always useful to have someone else's take on things. The pain I've had before has been in the muscles and this is similar especially with the statins when i developed rhabdomyolysis - (rapid muscle breakdown). I know I've had aches after a really bad RL attack but I can understand that- They get pretty aggravated. However, this seems to be the muscles of thigh and shin and ...wherever there's muscle really but only in my legs but it's pretty incapacitating... just like when you have the real flu and get aching legs! I will look into If it's not one thing it's another. I'm seeing my GP tomorrow for a normal check up so will ask his advice. I always like to go prepared though! I've learnt that they don't know everything!
I did look up side effects of rotigotine last night and it suggested "Musculoskeletal
Very common (10% or more): Arthralgia (up to 11%)
Common (1% to 10%): Muscle spasms
Frequency not reported: Elevated creatine phosphokinase[Ref]'
Now I'm not a medical person but one of the tests for rhabdomyolysis the key laboratory finding is an elevated CK .(creatine kinase) so I am wondering if there is a connection! I know the two aren't the same but similar! I've taken the information down so I can discuss with my GP. Thanks for the added thoughts which make me more confident to bring it up with my doctor.
THANK YOU! I sometimes think I'm jumping to conclusions and adding 1 + 1 and getting 3 but if you feel the same then I have confidence to raise the suggestion to my GP and it seems a simple blood test can detect elevated levels. It's scary though as when they picked up the rhabdomyolysis it was pure luck as I had a ruptured disk that caused lack of sensation in my leg and the doctor at the hospital simply did the test as I was on statins! Once they got the result they 'ran' in with 2 litres of saline to wash through and dilute the levels in my blood! Quite a scare really and I'm very lucky to have ruptured the disc otherwise the outcome could have been a lot different. My levels were 2000 times higher than normal and I was at risk of kidney damage. If you're on statins, the doctor who was from the US said regular blood tests were important and I'd never had any in several years on them. Cannot ever take them again.
Thanks for you help. It's such a comfort knowing you're there with your immense knowledge of all sorts medical.
Thank you Manerva. That backs up what I thought and having been to the doctor, he too agrees and has taken me off the patches!!! Blow, and they were working well for my RL. Now I'm going to be on Ropinerole which the doctor had never heard of before today- Thanks to the forum, I was able to tell him a lot of people have success with it. Now I'm waiting for the chemist to order it in as no-one in town has any!!! He's starting me on .5 mg which I hope will deal with the RL and no Neupro patches will resolve the rhabdomyolysis! He really listened when I told him and didn't even question my rationale and came to the same conclusion you and I did. He's proving to be a great ally in my fight against RL. The problem comes after this as I've tried everything else except cannabinoids which aren't legal in this state, although they can be approved by the federal govt! and methadone which would take quite a bit of sourcing! Anyway, for now, we'll try ropinirole and see how that goes. Thank goodness for the forum and the wisdom of it's community. Thank you.
ooops. Rotigotine is a dopamine agonist, which as we've concluded, can cause rhabdomyolysis. Ropinirole is also a dopamine agonist, so is also likely to have the same effect. I fear you've gone from the proverbial frying pan into the proverbial fire.
Have you previously tried an alpha2 delta ligand? They work for some people, with less risk of augmentation.
Yes was on gabapentin for about 9 years - up to 2,800 mg daily! Tried Lyrica but had side effects I couldn't' tolerate. I'm aware of the risk of dopamine agonists and was on pramipexole for 10 years+ till i came on the forum and was told about augmentation. I must have been augmenting for at least 3 years!!! but didn't get the build up of CK. I will watch VERY carefully and be back at the GP in a flash if I get that pain again. The only drugs left I haven't been on are cannabinoids and methadone! Certainly that I know of at present. Time to do more research! Thanks for your help Manerva. You are so generous with your time and information.
I got to 5mg on neupro and 3mg on Ropinorole at night and I was sleepy all day the patches were great but if I forgot to put it one my rls was really bad insanely bad I didn’t want these patches running my life so I transition to 4mg Ropinorole ER and 3mg ropinorole and my doctor dropped 2mg ropinorole ER I’m trying to get off the dopamines at times the rls acts up but I’m dealing with it to day I go back to my doctor for some tweaking
Thanks for the advice. I guess I'm currently 1mg in 36 hours and don't intend to increase for fear of augmentation. It's not a long term answer I dont' think but is helping me to get back from the sleep deprivation which was wrecking my life- huge gaps where I can't remember what I did!!! Now at least I'm getting some sleep and managing to work more efficiently. I think we are all in for a long journey of tweaking medications to try to keep the RL at bay!
Hello!
I get pains off and on. I've noticed a few patterns between when they show up and what I've been doing.
-if I don't have enough water in my system they will show up
-they will show up within a day or so of taking herbal anti-inflammatories (turmeric, valerian root, etc.)
-if I've had the Neupro patch on for longer than 24 hours they will show up. (I've also noticed that if I've had the patch on for longer than 24 hours my energy starts to drain more quickly)
I have something very similar to this and I do have fibromyalgia but I'm not sure that it is related I take Percocet for my fibro and it does take care of it but I think it's actually from my back I've had three back surgeries and I think the pain in my groin and my legs is actually from there
It seems to be quite common for those with RL to have back injuries. I have osteo-arthritis and degenerative spine disease. I'm beginning to think that seeing an osteopath might be a good idea or chiropractor. Still, have to wait till the funds stretch that far!!!
Hello I too take Tramadol maybe twice a week- I have realised that it has augmented- I find if I take it one night the next day I will have leg pain and if I don’t take it that night the next day I will have severe leg pain- as it is extremely addictive I think maybe it’s a bit of withdrawal issue- only thing I can think of- I’ve found it’s better for me to take half a codeine rather than Tramadol- seems safer and also Tramadol helps me sleep but has that side effect/withdrawal pain in the legs- Clonazapam or Codeine are my only safe ones and the less medication I take the better- it’s certainly a juggling act! Hope that helps a bit- take care x Jan
I quite agree about the fewer meds the better. I was on heaps earlier in the year and now only three. Given that they were all for RL you'd think my legs would be unbearable but they're only as bad as they always were pre augmentation. My new rule of thumb is the fewer the better. Wish I could have none but that's unrealistic and wouldn't let me have a life so it's a compromise and keeping ahead of side effects etc. Good luck with yours.
Interesting discussion between you and Manerva. Well done.
I just want to chime in because 5mg ropinirole is well above the standard max for RLS (4mg on the leaflet, but in the book Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen & Hening, the authors write that they think it should rather be 1 mg. Anyway, with your previous use ofDA’s, both pramipexole and rotogotine, and your previous augmentation on pramipexole, it may be hard to control your RLS with a much lower dose of ropinirole than the 5mg suggested by your doctor. But maybe you should try and find your lowest effective dose. And augmentation may strike again soon, given your history. Sorry to have to warn you. Especially because you don’t seem to have many alternatives still open to you.
Have you considered discussing dipyridamole with you gp? There is one long and complicated paper about why it may work for RLS (Ferré et al, 2028) and one small study on its use for RLS patients (Garcia-Borreguero et al 2019). I don’t have links to the papers now, but can hunt them down for you of you want. If you pm me, I can even send you pdfs of the full papers that I obtained through the electronic resources of my university. Look for posts by involuntarydancer, she has taken it for a while and she thinks to her benefit.
Good luck, you still have some road to travel, I assume, to get your RLS better controlled.
Thanks Lotte for you input. I think you misread the dose... it's .5mg I should have put 0.5mg so there's no confusion. I feel quite dubious about the success of this venture knowing what I know about augmentation however there isn't much else to try at present. I'm still waiting for an appointment with the haematologist re iron infusion. I would refuse all dopamine agonists if I had some choices otherwise but I was so sleep deprived I was losing complete periods of the day when I didn't know what I'd done or where I'd been. really scary! I would like to find anything that will help so will pm you.
thanks everyone for your input. It really is an awful disease and with so many variations in what helps who and for how long, seems like it's a long road for all of us to negotiate as best we can. It's a great comfort meanwhile to know that there is a community of well informed people always there to help with a question. I really appreciate it. Thank you.
I take ropinirole in the evening and it does make my muscles ache. I get some shooting pain in my feet at times. I tried pramipexole and the neupro patch as well. Ropinirole works the best for my RLS but augmentation can occur. My GP referred me to a Pain Treatment Center for the pain. After reviewing my symptoms, the doctor suggested and prescribed hydrocodone 5/325, which is 5mg opioid and 325 mg tylenol. By taking 1 of these, 1 gentle iron 25mg, along with the ropinirole 0.75mg, my pain is less, my sleep is better and I reduced the ropinirole to 0.75 from 1.0 mg. A sleep doctor told me to take the lowest dose possible of the ropinirole and I think he is correct. Hydration is very important to the body functions. I found too little water and too much sugar can cause more pain and inflamation. I try to stay away from alcohol and sugary foods as well as high carb foods. This regimen has worked the best for my RLS and helped me lose weight. Best wishes for you.
I've tried the opiates but no luck! I also don't have have sugar, caffeine, salt, alcohol etc. etc. The list is endless. At least I feel as if I'm doing something to help my condition! Thanks for your comment.
Im also glad that your mindful meditation course is going ok . I cant help you with the pain you are having -my sincerest of apologies. as Ive said to many fellow RLS sufferers who are taking it . Ive never taken it before so wouldnt know what to do
I wish you the very best of luck & to please keep positive
Thank you. I tried that about 10 years ago without much success. I do sometimes think though that given all that I've given up in those years in terms of diet, it may not hurt to revisit some of the medications I tried earlier incase they are more effective now that there's not as much 'resistance' due to food intolerances and interaction.
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