Can't cope anymore

[Leelee49]

Hi everyone, newbie here, I can see myself been here a lot, what with no sleep 😞. My rls seems to be getting worse, this last week I was prescribed tramadol which I had to stop, made me ill, then ropinorole, which also made me ill, so at the moment I'm only on gabapentin and pramipexole, which are obviously not helping. I can't cope with this any more it's making me just want to give up, or chop my legs off( extreme I know) but that's how I feel. My doctors don't seem to have a clue as what to do. Any help really appreciated.

[Joolsg]

Ropinirole should not have been prescribed at the same time as pramipexole as they are both dopamine agonists. If you feel like you want to chop your legs off, that sounds suspiciously like augmentation. What dose of prami are you taking and for how long?

If the pramipexole has stopped working then you will need to wean off it slowly and go through withdrawal. Usually, tramadol is prescribed to help during withdrawal, but if you react badly to it, you will have to find another opioid like oxycontin or codeine to take until through withdrawal.Only when off the prami will the other drug you are taking, gabapentin, start to work.

Look up all the posts on augmentation and also posts by Nick-the-turk who went through withdrawal a few months back.

[Leelee49 in reply to Joolsg]

Hi, sorry, I came off pramipexole to try reprinirole, should have stated that sorry.

[Hidden]

First of all, please don't give up. Suicide is a one-way street; you can't take it back. Second of all, I'm glad you got off of Pramipexole. I augmented on that 2-3 years ago and it almost cost me my life! I've also been to the point where I've wanted to chop my legs off. I also wanted to stretch the back of my legs to the point where they would break off at the knee. The reception I got when I told someone that was "wouldn't that hurt?" I replied that I wasn't thinking about that; I was only thinking about making the pain and discomfort stop. Have you tried compression stockings? The tightness helps to calm my leg movements. Have you tried soaking your legs in warm water? When I do it, I swear I can feel the blood start to flow again! Another thing I do is put my legs directly up to the hot tub jets at my local pool. The pounding feels wonderful! This last discovery was made when, upon my announcement one evening that I couldn't take it anymore, my hubby suggested we go to the pool. I had my first good night in more than 6 months after that!

I'll let others reply re getting ferritin levels checked, etc. since they know more about that than I do, but I hope I've helped some.

Take care,

[Leelee49 in reply to Hidden]

Hi jess Thankyou for your replies, I do put my legs in the shower jet, hot and it does help for a short time, like I said before I have been googling a lot whilst been awake through this, and came to the conclusion of trying cannabis oil, it seems to help a lot of people so worth a shot I suppose. Will let you all know if it does, will be receiving it tomorrow. Fingers crossed. Has anyone here heard of positional release manipulation? It's mentioned on the NHS website but doesn't say you can get it on there. Thankyou again

[Izzybelle22 in reply to Hidden]

Leelee49, glad you are here and welcome! I know, as most everyone of this sight, exactly how you feel. It is absolutely horrible and when your medicine doesn't give you any relief, sheer panic and desperation set in and it just gets worse from there. I agree with Jess3648 regarding " the pounding" of the water jets, or in my case, I resorted to using a back massager that really targets the area of discomfort. Usually these massagers are for 'muscle' pain but it actually helped with the nerve pain from RLS. Although its effects are only temporary - massage for 10 minutes and you might feel decent for the next 60 minutes, but it definitely helps to take the edge off.

[Juliewils1965 in reply to Hidden]

Hiya I've tried Epsom salt in warm bath to and it really helped well worth a try and the feeling of having a bit more sleep was so good x

[Leelee49 in reply to Juliewils1965]

Hi Thankyou will give it a try. As I type in laid with a heat pad around my leg, swapping every 5 mins, it seems to be helping

[Juliewils1965]

Hiya oh no doesn't sound good I'm on ropinrole at nite and day and physio suggested I take tramadol for back pain which is causing legs to hurt at docs in morn I hope you feel bit better soon x

[Leelee49 in reply to Juliewils1965]

Hope they work for you, I think I'm just not suited to such strong drugs. Thankyou for replying

[Leelee49]

Hi all, just a quick update, after reading many forums, I noticed magnesium mentioned quite a lot, so I went ahead and bought some, anyway, for the last 2 days my legs haven't twitched at all, I'm also taking vitamins b, and d. I also bought some cannabis oil in tablet form, which I started taking today, I feel so much calmer, not high or anything, my legs do feel a bit weak, but I've not been very active due to lack of sleep for a week. So, I'm not counting my chickens just yet, but things are looking on the bright side. Just to add about magnesium, it's magnesium citrate, and helps with a whole host of things, like anxiety, rls and many more, please do a google search on it, it's very informative, and I do think all the medication doctors give us don't help, they don't really understand about low magnesium levels so don't test for it. Thanks all for all your replies before, I'm hoping things work out and I hope this info might help others.

[Hidden]

Please read my post MEDICATIONS THAT WORK FOR ME 100%. No guarantee it will work for you. Please stay strong, don't let the beast win.

[Leelee49]

Hi all, just a quick update, after reading various posts on here and also doing some research online, I am now only taking gabapentin 3 a day plus magnesium citrate, vitamin b complex and multivitamin with iron. Now I don't know if it's a combination of all of them or just the gabapentin, but my rls has been stopped for a week now, I must admit, this last week has been hell though, I have felt sick, dizzy, weak and generally unwell, not sure if it's cos I stopped the pramipexole, but my doctor assures me it's not as I've only been on it since may. Anyway, I'm slowly feeling better, and getting lots of sleep (heaven) 😊. I hope this will help many of you to know it can be stopped and hopefully for good. Best wishes to you all and Thankyou for all your helpful replies xx

[Gomedical]

Dear Lee and all ptns dealing with this terrible syndrome. Sadly, at age 44, after graduating medical school and going thro hell from RLS. I know it's all ftom God, for the good. Sadly augmented rxn gives you the sensation, in addition to regular RLS terrible endurance, the sensation and impulsive feeling of chopping off, and believe me I'm writing it now, as I feel now so. Sadly, Mayo Clinic and all clinics dedicated for RLS came to the conclusion that when nothing helps, the use of opiods becomes mandatory to recover the quality of your life. Despite the negatively restrictions of opiods pertaining the use for pain, it became less restrictive for the use for RLS. Studies show that those using it for RLS have less tenancy to abuse it. I didn't try CBD oil, a positive form of Marijuana, which includes cannabidiol (CBD) and tetrahydrocannabinol (THC), the two natural compounds found in plants of the Cannabis genus. Thanks, I'll definitely give it a shot and do much research of CBD for RLS. The CBD is available in many health shops, as it's the healthy part of it, vs THS, which has been related to a higher increase of psychosis, according to most recent study. I know, that being on opiods, such as Oxycodone (most Rx for pain and RLS) gives you a new life, despite being deprived of the fully functioning of feeling 100% yourself, it's still the best and the only one that gives you 100% relief. Tramodol, not only doesn't help according to many studies, it even could aggregate the problem due to the SSRI component, found in Tramodol. Try to stick to the lowest dosage possible and gradually increase it to the minimum possible dosage. RLS is a very aggressive syndrome and we should keep also all our friends in our prayer. Suicide is a irreversible decision, with the chances, God forbid to be born again with much more aggressive and painful illnesses. We can't void the problem when God gave you the problem, while He prepares you new solution, such as Oxycodone, Percocet, etc. The key is prayer, just a few seconds a day, with bearing in mind for all our friends suffering from this terrible syndrome. One that could be helpful, Gabapentin (Neurontin) or Pregablin (Lyrica) is very discouraging, as initially it might give you some relief, just to discover the you could easily gain about 40lb or more in a short time, which aggregates the RLS, in addition to the the many pounds gained. Since, I used, a few drops of prayer and Percocet, I regained my life, thank God. The RLS foundation went down to congress and senate to assure that the restrictions of opiods should apply for pain mainly, not only for RLS, which is the only medication that works. Of course opiods affects a bit your life schedule, from time to euphoria, but bear in your mind that you're not in a disadvantage to other people, just the contrary is true, God wanting the best for you gave you this illness and with the opiod solution. You are diagnosed with this terrible illness, any tidbits accomplished in a day is worth it to God and to your spouse (when you're taking to her/him relate how suffering this disease is and just because of your love to her/him you're doing the max with love and harmony to you, despite that actually the illness makes activity at home, etc, very challenging. Despite the challenges, just because of the love to your spouse I'm doing it to you with sacrifice). Learn to love yourself and appreciate what you are doing. If you take it as God's will you appreciate and say to yourself that despite the challenges, restrictions from the illness and or from the medication you did tidbits good things in your day, what other people with this illness and medication, of opiods, wouldn't ever do a 1% of what I did today. Lift yourself, courage yourself, as this, as we know is so challenging and despite that you truly triumph. God gave us the restrictions for our good and despite that I did something today, which in the religious commentary you see that God values the Mitzvah, the good deed, according to the challenges that it took to do it. We as RLS ptns know it very well what it means, it's only the power of the evil inclination that makes you forget of the greatness of your accomplishment, which in the heavenly scale is worth it a value that can't be depicted, more than the deeds performed by a healthy person, who utilized every second. That person with no challenge would never do even the smallest fraction of what you are doing. This 3 components will uplift your life to a new you. Don't try to be the other's, you're to be the new you. Acquire an Rx of opiods, chat even for one second with God for you and for all RLS inflicted ptns and importantly value yourself. God gave you this illness and only you do spend a few seconds a day to accomplish things. That other, will never do even a fraction of what you are doing. The NEW YOU is the greatest person to God and to your spouse. Remember it's the new you, who despite the illness and medication, goes this extra few seconds, which others wouldn't do(that should never even be in your mind; there's no other, it's only the NEW You) . Be strong my dear brother and sister, as we are all in the same boat and only in the word to come you'll see the real value of you, that the righteous up there will envy how you did that accomplishment despite such a miserable disease, which tries to destruct and block you from doing anything and you baffled the disease and medication and you accomplish that tiny thing, which despite the evil inclination, you did this tiny, which if you term it tiny it's a tiny dimound, that is the only clean dimound available in the entire world that even the greatest king don't possess and his entire wealth is not even close to your value of your multi trillion dollar gem and dimound. May God bless you all, you're in my prayers, we hope and pray one day a real remedy to be a full cure for it. Opiods is only to alleviate the illness, no medicine is yet available to heal the illness. We are proud that despite this illness we are loaded with an abundance of trillion dollars tiny gems. With love and prayers, Dr I. Rose M.D, neurologist. I suffer and in the field neurology we are well aware that we really don't have the physiology understanding of the illness and we are not even at any blind placebo new medications, after so many medications failed, except for opiods which, as said, just alleviate the disease and syndrome. It's the syndrome, that we won, as we will prevail and already prevailed and accomplished abundance of tiny diamonds, not agreeing to sell it to anyone. Be strong dear brother and sister, with prayer, pain and love, Issac.