MY STORY sad but true

[sweetiepye]

At 4:00 today I had my appointment with Dr. Berkowski at the University of Michigan . I saw him until 6:00 and I just got home at 9:00. I am exhausted and I really don't know how I feel yet. Apparently my brain doesn't absorb iron as it should. Years ago I became anemic and developed RLS and was given Ropinirole. Old story ,it worked for awhile , and when it didn't dose was increased. I was taking 12 Mg. a day for years along with Gabapentin, Clonazepam, Carba- dopa . To say I augmented is a severe understatement. There has been some damage to my brain in that it is under functioning/over functioning in the dopamine department and sending messages to various nerve centers. This is totally a layman's explanation but you get the gest . So after a sleep study I will be on Opiates to help get off the ropinirole. It will be difficult but I'm ready to do this. Sleep study has to be first because I could stop breathing while on opiates as I have sleep apnea. The iron infusions I received in the last few months were the wrong kind of iron. According to Dr. B. one iron infusion of a large amount is better than several small doses. Infusions will not hurt you. As I receive more information I will post it. There is as usual more to say . , but I'm tired and need a think. Pam.

[Celtic27]

Hi sweetiepye you've got a lot going on my friend! I hope at the end of the day I just hope they help you get better! Keep me up to date on how your getting on! God bless you my friend david

[sweetiepye in reply to Celtic27]

Thank you David. It means so much having friends on my side. I'll get through this there isn't any other option. How have you been ?

[Celtic27 in reply to sweetiepye]

Hi there Ive not been to bad have had some rough spells lately but getting there my depression has been problematic but under control! Trying to get as much sleep I'm up and down all night it's 6:46 am and I'm really tired but can't sleep! Take care my friend david xx

[sweetiepye in reply to Celtic27]

It's on going. No rest for the wicked. lol

[Mollycat33]

Hi, I can relate to what you are saying, you have my sympathy, I have been suffering with RLS for over 40 years, I think one if the worst things is physicians tend to recognise it as an ongoing condition, it took me 40 years to get some medication, I hate to say hate to say the same as you, it’s starting to not work, but I have a broken heel too. Some years ago my doctor said I was aneamic and gave me several shots of iron, but unfortunately all that did was bend and stiffen all my joints, I’m really at a loss. I hope they get to the bottom of your RLS, keep us informed please.

[Swimming2018]

Hi, like me you are on a cocktail of drugs and it's still not working. I'm either going on a new drug or coming off an old one. At the moment this new one is making me sick after 2 days and coming off Sertraline has left my head buzzing. I can't have a normal life. However, cold, flu, sore throats etc I never get.

So I understand how you feel. I don't think our brains could function normally with the lack of sleep, the pain and the drugs. Thinking of you

[marsha2306]

Sounds like you are on the right track now. Just to familiarize yourself with the iron and the brain, you should look up the video from Dr. Christopher Earley at Hopkins. You can find it on YouTube...Christopher J Earley, re Iron Treatment.

He’s one of the leading experts on RLS .

[sweetiepye in reply to marsha2306]

I will do that. Thank you for the information. The members on this site are what get me through. Pam

[kesss]

Hi,

I had RLS years ago and was offered ropinerole by the local GP.

I asked what it was and when I discovered it was a mental health drug, that would be administerd in a small quantity for this purpose, I immediateley said no.

Any mental health type medication is and always will be a no go area for me.

I generally do not like and avoid all and any tablets / pills etc.

I have great sympathy for folks for whom their situation is so bad that taking these medications is a no brainer. I am very lucky and thankful in this respect.

I suppose it depends on how bad your RLS is and degree.

Mine has been stopping me sleeping at night for about 12 years now, and only now am I starting to accept that diet plays a large role.

In a post on here, that was a reply to one of my other posts, someone suggests that their triggers are chocolate, caffine and artificial sweetener and lack of any excercise.

My triggers identified so far are sugar, especially refined sugar, too many carbs, lack of daily exercise and dehydration. When I get up in the middle of the night with RLS and drink water it always helps.

I am for the first time yesterday cutting wheat out of my diet. No RLS last night, so I will see how that goes.

My RLS can last for up to 3 hours and generally affects me when I am in bed ready for sleep. Though I get RLS often in the evening, while awake and out of bed it never affects me that so badly.

If I am busy I generally don't notice it during the day. It's generally at night that it gets bad, if it's going to.

I don't know how bad your RLS is compared to mine.

Hope you manage to get off some of the meds if that is possible.

Cheers

[sweetiepye in reply to kesss]

This is the first time I have heard that ropinirole is a mental health drug. It does work on the brain as a dopamine agonists and is basically used for Parkinson's Disease and RLS. In the beginning it was considered a wonderful way to treat RLS and it did work for awhile for me.My RLS is severe .