AT MY WITS END

Post by **Rustsmith** » Sun Nov 30, 2014 10:21 am

LIke badnights, I am part of the WED contingent that does not seem to be affected by exercise. I am a moderately successful runner and my racing and training schedule alternates between very intense exercise during races and when preparing for marathons and very limited exercise (rest) in the days just before major events. I have not noticed that there is a correlation between my WED breakthroughs and my exercise levels.

On the other hand, I have seen quite a few others whose experience is much different.

jwkwak3 · Post by **jwkwak3** » Tue Dec 02, 2014 2:38 am

My exercise / activity level is not consistent but maybe if I made it part of a regular routine it may not bother me.

Post by **badnights** » Wed Dec 03, 2014 7:52 am

That's not a bad idea. Give it a shot and see what happens.

jwkwak3 · Post by **jwkwak3** » Wed Dec 03, 2014 10:58 am

Doctor visit today will follow up with results this evening

Post by **Polar Bear** » Wed Dec 03, 2014 8:33 pm

Good luck at your dr appointment.

jwkwak3 · Post by **jwkwak3** » Wed Dec 03, 2014 9:29 pm

Guess I am going to try another doctor. I saw on the board where a doctor form SC was on some panel for RLS in 2006. I know that has been a while but all my doctor did today to combat the earlier daytime on set was increase Requ I'll p. So now I am to take 4mg of Requip in the afternoon and 4mg of Requip along with 4mg of Klonpin 2 hours before bed. Feritin level was 107. Anybody else from South Carolina on here and got any doctor recommendations. I can travel about any anywhere in SC or even lower NC or Upper GA.

Thanks so much for the support

Post by **ViewsAskew** » Wed Dec 03, 2014 11:15 pm

I am so sorry. That is likely not going to help at all - and likely will make things worse. Good news that you found a doc in SC that was on a panel about WED. It's not a perfect indicator, but it's much better than just picking blindly.

Is Emory outside of Atlanta within your range? Dr Rye - who has WED/RLS - is there. He does a lot of research into the genetics of WED. If I were anywhere close to him, I'd see him in a heartbeat. I've met him a few times at presentations and he's very easy to talk to.

jwkwak3 · Post by **jwkwak3** » Wed Dec 03, 2014 11:40 pm

I will look at DR. Rye Atlanta is only 3 hours from me, I will see if he is in my network.

I also feel that the increased Requip is usless.

Post by **ViewsAskew** » Thu Dec 04, 2014 5:39 am

Once you've augmented as you likely have, the extra stops helping. It may actually help to reduce it - at least it has for some of us. I reduced mine by also 70% and had no worse symptoms and in some ways was better. I limped along like that until I found a doctor to help me.

I probably shouldn't admit it, but I also borrowed some old opioids from dental surgery. They helped me through some of the rough nights. I also was able to test to see if they would work - they did. Of course, getting a doctor to prescribe them to get through the augmentation is a completely different thing!

Post by **Polar Bear** » Thu Dec 04, 2014 12:52 pm

3 hours to see Dr Rye -
This could be a fabulous gift to yourself.

jwkwak3 · Post by **jwkwak3** » Thu Dec 04, 2014 3:31 pm

Yep about 3 hour drive. I talked it over with my wife last night and looked him up he is my network. It will be difficult to get in to see DR. Rye before the end of the year (out of Pocket Maximum met), but will call for something as soon as I can get in.

The only bad thing is that driving is getting difficult with the symptoms the hour drive from the doctor yesterday was torture, and today I am at work and I feel it in my legs and arms. However the drive is worth it if relief can be found.

I am not sure about others but I get my symptoms around my knees, it's a tingling, creepy crawly feeling that makes me want to move and it is that way in my arms. The thing is if I resist the urge to move I feel as if I am going to go crazy.

I tired to go back on doctor's reports to see my dosage and how long on each of Requip but I could only go back to 2010. In 2010 I was already on 3 MG of Requip, and 1 MG of Klonopin. I do remember starting out at .5 MG of requip and moving up to 1mg and staying there for a bit before hitting 2 MG and not long after that 3 MG and so forth.

Post by **Polar Bear** » Thu Dec 04, 2014 6:11 pm

I'm assuming that your symptoms are difficult even when you are driving for yourself.
Usually driving is easier than being a passenger.

I'm looking way ahead here but will go ahead while it is in my mind

What I would do faced with a 3 hour drive to Dr Rye...
I'd ask my present doctor would he give me a supplementary 2 day supply of 'something' to help with the journey.
i.e. The journey x both ways.

If doctor understands the disease but is reluctant to prescribe something else for continuing treatment, perhaps doctor would prescribe a 'one time', I'd hope doctor would realise just how desperate your symptoms are, given that you are going this distance to see an expert for treatment and would like to think he could help for the 2 x way journey.
My GP did this for me for a long cross Atlantic flight - gave me codeine to use as a supplement - and it worked brilliantly.

viewtopic.php?f=2&t=1068
If you go to this link and click on WED Medical Bulletin there is a little information about various medications.

Would someone be sharing the driving with you, just in case a new medication might make you feel a little sleepy.

jwkwak3 · Post by **jwkwak3** » Thu Dec 04, 2014 6:19 pm

Even though the driver would be difficult I can do it and if needed my wife would help with the driving. I have access to other meds in the opoiod category but at my work if the prescription is over 30 days and they find in your system during a random then you are out the door. I have a filled script that was over 30 days ago from an injury and I did not take all the meds so if I were to go that route i would need a new script. I will check out the link.

I did take the requip earlier today as the doctor prescribed and man did I ever feel sick, the symptoms went away for a while but I feel them coming back, which is what I feared.

Post by **Polar Bear** » Thu Dec 04, 2014 7:40 pm

When you took them for your injury did you find that they helped also with your WED symptoms.

Regarding you dosage of medicaton - am I understanding correctly.
Are you saying that you were on 4mg dosage, and that today your doctor added another dosage of 4mg--------- two doses each of 4 mg....... 8mg daily !!
If you doubled your meds from 4mg (which is high) up to 8mg (which is mad !! ) then it is little wonder you felt ill.

But no way should you have jumped up by a dose of 4mg. You shouldn't being going upwards with your ropinerole at all.
I don't believe that anything over 4mg is going to be beneficial anyway.

Have you ever tried splitting your 4mg daily dose, eg take 1mg at lunchtime, 1mg at around 5pm, 1mg at around 8pm, and again 1mg at about 10pm - just an idea.

jwkwak3 · Post by **jwkwak3** » Thu Dec 04, 2014 7:45 pm

Yes they did, they helped when nothing else did.

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