How I cope now with RLS

[Silax20110]

Hi I have suffered with RLS since I was 11 years old I have it in my legs arms and back! Only my feet and hands are free from the suffering, as a child I was often told by the doctor it was growing pains eventually 30 the doctor diagnosed RLS! There is no one in my family past or present who suffer usually genetics blamed for the onset of RLS at a young age no not exact.

Had my son 31 the last few months were unbelievable agony I actually told the doctor to enduce me as I just couldn’t tolerate the RLS any longer,

My mother in law used Dihydrocodeine from the doctor for severe back pain she suggested asking to try them after all else had failed, once my son was born my doctor prescribed them I was 31 I am now 50 I take 2 tablets 3 times a day and have taken the same amount since first prescribed since I only suffer with RLS if I miss tablets but once taken it stops as if It is gone 2 before bed and I can sleep all night! As a child I used to hit my knees into the wall to just to divert the pain as a sufferer any pain seems better than RLS also I used to before the dihydrocodeine I would rock my legs in bed but you can not stay in bed even with complete exhaustion RLS will not let you rest or sleep!

[Joolsg]

So pleased you have found something that works for you. Codeine and opioids are known to help.

I know exactly what you mean about causing pain to divert from the horrible creepy crawly feeling of RLS.

[Silax20110 in reply to Joolsg]

Hi you might find this hard to believe the doctors tried me on just codeine and cocodamol and tramidol none worked to stop the RLS it seems to be something in the Dihydrocodeine hydro means water I guess so that leaves the Di? Lol any ideas kind regards x

[Madlegs1]

Please see my reply to your other post.😎

[Parminter]

Have you had your ferritin levels checked?

If not, get a full blood panel done, including ferritin and transferrin.

[Silax20110 in reply to Parminter]

Yes I had the normal low iron in my test results so I was again prescribed iron tabs they also tried just codeine tabs they didn’t work nor cocodamol odd but it isn’t the codeine part that helps it’s something else in the Dihydrocodeine tabs only that shuts the pain down 2 can take up to an hour to kick in but then I do not suffer RLS at all very strange I find

[Henshaw241241]

Hi I have had RLS for years walking outside at night climbing the walls different tablets then I saw a stand in doctor after many years then she asked me would I like to seea neurologist so I went to see her after waiting for 5 months but it was worth it I was taking a very small dose of pramipexole so she told me to stop them was waste of time then she put me on stronger dose 0.18 mg in morning at 9 am 1 at 3 pm 1 at 9 pm very. Good the best nights sleep for years I have a follow up in may I don't know if you heard there is a new program on Wednesday on channel 5 at 9 pm a new cure it will be worth watching all the best for you Henshaw 241241 xx

[rls_optimist in reply to Henshaw241241]

Hi, Henshaw, please be very careful with the pramipexole. You are now taking three times the maximum recommended dose. At that dose, you are very likely to develop augmentation, meaning that your RLS symptoms will get worse than they were before you started taking pramipexole. You might try searching for "augmentation" on this site; you'll see lots of stories of people going through Hell to get off of pramipexole in order to stop the augmentation.

Meanwhile, get your blood iron levels checked: specifically, ferritin - should be at least 100 for us RLS sufferers. Most RLS experts now agree that low iron levels in the brain are the likely cause of RLS. My own experience verifies that for me. My symptoms are much lower once I got my ferritin lev l up over 100. To do so, you can take oral iron supplements, or you might need iron infusions. Good luck!

[Henshaw241241 in reply to rls_optimist]

Hi thank you for your information in July my ferritin lronstorage compound normal at 148 I have to go back to the neurologist in may what do you thing I should do wait till then or do something about it now how do you do it I don't want it to come on more than it was please help He nshaw241241

[rls_optimist in reply to Henshaw241241]

Your ferritin is at a pretty healthy level already. You might need to get it higher, but I would recommend talking with your doctor in May before starting oral iron supplements. Check with him to make sure it will be safe for you to take iron supplements. There is a very small chance of having too much iron. Your doctor should be able to determine if it is safe for you. Good luck!

[Silax20110 in reply to Henshaw241241]

Hi yes I saw the ad for the program I will be watching I am trying to get my partner to watch it as I am sure he thinks I don’t half put most of the systems on, I’ve wished on times he could have RLS for a day and then doubt my suffering. Looks like this documentary has been a long time coming and a well received chance to know your not alone let’s see what it has to offer. Kind regards

[Joolsg in reply to Henshaw241241]

I suspect the programme will not show anything about a new cure. The last programme on Channel 5 about RLS showed people with severe RLS but it didn't mention any treatments at all. I suspect this follow up programme will show the same people but, this time, show the doctors prescribing either dopamine agonists, alpha2delta ligands, benzodiazepines or opioids. So, no "new cures" just existing treatment meds.

Incidentally, I see rls_optimist has advised you about augmentation as you are on 3 times the recommended dose of pramipexole. You should be doubly careful because you suffered augmentation on Ropinirole 2 years ago, so are more likely to augment on pramipexole. Please do read the articles so you are aware of the symptoms, and also be aware that most neurologists are unaware of how to deal with augmentation, so you will need to be your own expert on the condition.

[Henshaw241241 in reply to Joolsg]

Do you thing I should start to come off them I am seeing the neurologist in may for a follow up I take 0.18mg 3 times a day ok at the moment. Should I wait till may and have a talk to her or start now comeing off them henshaw241241

[Joolsg in reply to Henshaw241241]

If you’re in Augmentation then the sooner you start to reduce slowly, the sooner you’ll be free of the Augmentation symptoms.

Did you read the posts and listen to the video by Dr Early describing Augmentation?

rls-uk.org/augmentation-reb...

If the pramipexole is no longer working, you have had to increase the dose, the symptoms have become more intense and moved to earlier in the day and/ or to other parts of the body, then it’s Augmentation.

Dr Early advocates coming off dopamine agonists without the help of strong painkillers like tramadol or OxyContin but that is very, very brutal and most other RLS experts like Dr Buchfuhrer recommend a slow reduction in dose with the help of tramadol or OxyContin.

Once through withdrawal other meds to consider are pregabalin or Targinact.

You would have to discuss the withdrawal schedule with your GP and to get the painkillers to help.

I understand that you will be reluctant to come off pramipexole but if you are in Augmentation, it is the only way to get rid of the awful increased symptoms.

[Henshaw241241 in reply to Joolsg]

Joolsg yes the pramipexole is working the best nights sleep for years but I am a bit concerned how long before it goes back as it was before do you think have a talk to the neurologist when I go in may to see her thank you xxHenshaw241241

[Joolsg in reply to Henshaw241241]

As you are sleeping well and don’t appear to have daytime RLS, Wait until you see her in May. Then, Definitely discuss your high dose of pramipexole with her and the risk of Augmentation and ask her what you should do if you do start to suffer Augmentation symptoms.

If she doesn’t know/ doesn’t have a detailed response then change neurologist.

A good neurologist should know about high doses of dopamine agonists causing Augmentation and have a detailed plan to help patients to withdraw from them slowly.

Ask for a full blood test as well and get the actual numbers for serum ferritin . Studies have shown that raising serum ferritin above 100 can allay Augmentation and help RLS symptoms.

Where are you? The UK? Maybe we can suggest alternative neurologists if yours can’t supply detailed answers to the above questions.

[Henshaw241241 in reply to Joolsg]

I am in West Sussex (edited by Kaarina, for your own security) I have a very little some times if I am sitting for a long time I will wait till may then have a talk with her how long it it roughy before it. Comes on thanks very much x241241

[Hidden in reply to Henshaw241241]

Hi Henshaw, I live very close to where you are. I take it you are seeing a neuro at the Hospital in Chichester.

[Henshaw241241 in reply to Hidden]

Thanks, yes I am going to see the neurologist in may for following up I am on pramipexole 3 times a day I have better night's sleep for years where are you Henshaw 241241

[Hidden in reply to Henshaw241241]

i am not giving my full address on here, for security reasons, I will say where i live in a PM to you.

[LotteM in reply to Henshaw241241]

Hi Henshaw, why are you taking pramipexole during the day? If you have symptoms during the day, that is already one of the signs of augmentation, even though your symptoms are well-controlled at night, allowing you good sleep.

Did this same neurologist you will see in May change you from ropinirole to pramipexole before? If so, she is not up to date with the latest knowledge, but may well follow earlier rules of how to deal with augmentation. She may as a next step change you to Neupro, yet another dopamine agonist, like ropinirole and pramipexole. You may want to think twice before you accept that, as augmentation may come back sooner or later.

Other typical RLS treatment options with medicines comprise alpha2delta ligands (epilepsy meds like gabapentin or pregabalin) or painkillers (like tramadol or Targinact); see others’ comments.

[Henshaw241241 in reply to LotteM]

Hi LotteM thanks for the information very good I was on a small dose of pramipexole then when I saw the neurologist in July last year she put me on high dose 0.18 mg 3 times a day in the afternoon some times on it comes I am due to see in may I think I will give her a ring and tell her I am in augmentation what do you think can I leave one off in the morning please let me know thanks I don't want it to get worse 241241henshaw

[LotteM in reply to Henshaw241241]

Just try. And if you’re unsure about it and the pills are not too small, you could even try half a pill less. Good luck.