Pain

[beady3]

Hi folks my legs are so painful tonight I could cry I have to just keep walking now my back has had it also very painful, hardly any sleep last night so things are a bit rough , I take 100mg tramodol a day and I have just taken another how many do people take,

[Hidden]

So sorry, beady!

Can I ask if you are taking an herb like turmeric? I’ve discovered that I cannot take these becase I get pains so bad that I end up crying. I’ve tried 2 of these: turmeric (and one other one that I can’t remember the name of, but it was also an herb that acted as an anti-inflammatory) before coming to the conclusion that the horrendous pain had to be a reaction to herbs.

[beady3 in reply to Hidden]

Thanks Jess I don’t take Turmric at all

[Hidden in reply to beady3]

You’re welcome!

Have you tried magnesium oil? It works wonders for when I’m in pain.

[beady3 in reply to Hidden]

Jess I have tried it but it makes my skin burn ,am sat on side of bed debating to get up , thanks

[nightdancer in reply to Hidden]

I think Beady has tried just about everything, sadly, like many of us.

[martino]

I take 200mg and the neurologist wants me to come off it and replace it with Gabapentin. After chatting this through with my GP and discussing sleep deprivation and continuing pain he suggested increasing the evening Tramadol to 150mg ie now 250 daily. I did, and think the pain level reduced but I think the sleep problem got worse. About a week ago I dropped the evening back to 100mg. I see the GP again tomorrow to have another chat.

[beady3 in reply to martino]

I want to thank you for reply, I hope you get some help from your doc tomorrow,tell me how you get on and I will tell you what my doc says, x

[martino in reply to beady3]

We are now where the neurologist wants me to be I.e. coming off the Tramulief and increasing the Gabapentin. It was a different GP who is concerned about tolerance. I am ok about this as we will prove something but I can’t guess what that might be. Hopefully the 2mg Neupro plus the Gabapentin and residual Tramulief will keep the RLS in check. My most pressing concern at the moment, and was very much so at 4.00 this morning, is the Small Fibre Neuropathy but my moments about this should be made elsewhere! I hope you had a good outcome.

[nightdancer in reply to martino]

Tramadol CAN cause some insomnia. I take between 200 to 300 mgs a day, but we added a sleep med to it years ago, and that helped. rxlist.com is a great web site to look up meds and side effects. It is extremely detailed.

[Jelbea]

I feel for you beady. I have been there so often. I have low back trouble and at present I have sciatica down both legs. When I get out of bed pain is so severe that I cannot walk immediately and just stand holding on to something. I started Oxycodone seven weeks ago at 5 mg in the evening and this is too low a dose. I hope to speak tomorrow to my doctor to try an increase. I will think of you in the wee small hours and hope your pain improves very soon.

[beady3 in reply to Jelbea]

Thank you for reply , did did manage a bit of sleep , I know how you are feeling sciatica is very painful. I am going to see doc tomorrow we all hope he will solve our probs but he can’t work miracles take care x

[camperqueen]

Hi Beady

So sorry to hear your problems with rls. I take 200mg Tramadol, 100mg about 2pm and 100mg again at 10.pm. I also take Ropinirole 4mg at 8pm. At the moment, fingers crossed, this works reasonably well but not always. I don’t think anything works 100per cent

Don’t know what to suggest to help you, only that you are not alone. Rls is the most awful condition.

Keep trying different things, maybe two drugs together, and I am sure you will find something that helps.

Good luck, thinking of you

Camperqueen

[beady3 in reply to camperqueen]

Thanks for reply , I am going to docs tomorrow I wonder if it’s augmentation I have , best wishes x

[Pam34 in reply to camperqueen]

Hi Camperqueen

That is a very high dose of ropinirole - over twice as much of the current recommended amount. Be careful that taking Tramadol isn’t masking the symptoms of augmentation. Make sure you are aware of what to look out for and don’t increase your ropinirole dose any further.

Pam

[camperqueen in reply to Pam34]

Hi Pam 34

Thanks for your post. I was unaware that 1mg was maximum advised for ropinirole for rls. I looked it up just now, and it said 4mg is maximum. Is there something new out about this? I have been on this for several years, and under several doctors and none have questioned it. I would like to get to the bottom of this, as obviously I don’t want to take too much, though it is working fairly well. I definitely would never increase it.

Thanks for your help.

Camperqueen

[Pam34 in reply to camperqueen]

Hi yes, the new recommended dose is 1mg but it hasn’t filtered down yet to many health officials.

And most of the information on the net is out of date.

Can anybody help me out as to where to find this info?

In the meantime if it is working for you then don’t worry, just be aware.

Pam

[Joolsg in reply to Pam34]

All the medication leaflets still talk about 4 mg. The UK medical prescribing books used by all GPs also has 4 mg as the dose ( I asked my brother to look it up in his copy).

I wrote to the Yellow Card scheme in the UK and received a very helpful reply from their medical advisor. He is aware of the 4 mg advice and knows it is causing problems.

He felt the only way to prevent Augmentation is for everyone affected ( joe public) to file a side effect report on the website and to “ educate” GPs and neurologists. Mmmm...

I may haul you in Pam to help me with my letter to ABN to request a general warning letter to their members about the increasing incidence of Augmentation. Hardly surprising when the meds leaflet and textbooks are outdated. I think it’s only the experts in the USA who are switched on about the maximum dose being 1 mg. Augmentation is still not taken seriously by UK GPs or neurologists. I can’t find any official research papers with the new 1 mg max Dose either. I’ll message nightdancer in USA as she may have it available. Let’s hope this study on the use of ecopipam to prevent Augmentation shows good results!

rlsfoundation.blogspot.com/...

[Pam34 in reply to Joolsg]

Now that would be something!

And yes, just let me know what you want me to do. I have nowhere near the same expertise as you but will help in any way I can!

[Joolsg in reply to Pam34]

Pam- The only expertise I have has been gained from the wonderful folk on here, the wonderful book by Dr Buchfuhrer and reading all the links to research articles posted on here.

I’ll message you as soon as I get further. Fingers crossed 🤞

[restlessinlondon in reply to Joolsg]

Hi Jools, I was just wondering what the Yellow Card scheme is. Can you enlighten me please!

[Joolsg in reply to restlessinlondon]

Hi there, lovely to meet you on Saturday.

The yellow card scheme is for reporting side effects of medications. Link is:

yellowcard.mhra.gov.uk/

The more of us that report Augmentation as a serious side effect of dopamine agonists like Ropinirole and Pramipexole, the more likely we are to be taken seriously by our GPs when we ask them for help. Also, the drug compnies might alter their leaflets to raise the level of alert.

I reported on the UK site and I also filled in the form for the FDA in the USA. might as well....

Jools

[Schwaerts55]

Hi Beady! Can empathize with you re dreadful pains from RLS. My own symptoms of RLS not as bad but pain is pain and injuries to my neck when I was 12, 50 years on are here to haunt me with burning pain in trapeze nerves. Wanted to warn you about excessive use of Trammies. "A very dirty drug" was how a neuro-doc I saw described Tramadol. Very hard on kidneys apparently. The 2 x 40MGS Ritalin I'm on has lifted my mood state considerably and next Monday will be asking MD about upping AM dose of Lyrica to 225MGs & continue with Lyrica 150MG bedtime. The "restlessness" RLS symptoms are worst from approx 3PM until well into evenings. Hoping higher AM dose of Lyrica will help better settle late afternoon symptoms. Here's hoping. "Ditto" re Turmric; it made me physically sick . Best from Steve

[beady3 in reply to Schwaerts55]

Thank you for your reply, I am sorry you have two lots of pain , I am hoping my doc will change my meds as they couldn’t be working , nice to know about tramodol I am hoping to come off those, I am going to docs 5.00 bet he will dread my coming but you can talk to him, I will email tonight to tell you how I got on xx