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Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Tinad
Posts: 3
Joined: Fri Sep 30, 2016 3:05 pm

Hi

Postby Tinad » Fri Sep 30, 2016 9:51 pm

Hi all, I started havin rls when I was 16 and now I'm 44. My mother, brother and daughter also suffer from it. For the past 12 years I have been self medicating with cannabis and it was working really well. Thought I was going to sleep well forever ha! So about 6 mths ago it started getting worse again. The pot still works but for about an hour or 2, then it starts again. So I decide to go to my doctor and see if he can give me something to help. I never asked or told him about it before because I was dealing with it myself. Anyway he looks at me and says " I think I'll send you to physio therapy". I was floored. He thought it was all muscular. I walk out speechless. How can a doctor not know about rls?? It only took me 10 mins online to find out everything about it. Anyway as of now I have it severe in both legs and both arms. It's not just like a bad sensation, both my arms and legs cramp up to the point where it's almost like spasms. My hands even go like claws( sorry but it's the only way I can describe it) I'm thinking I may also have it in my whole body because when I wake up night time even with out my legs kicking I have a strong urge to jump from the bed ( I usually do). It's so frustrating. I also have other medical conditions I'm dealing with. Im a pretty tough woman but this is starting to break me :(

Polar Bear
Moderator
Posts: 6618
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Hi

Postby Polar Bear » Fri Sep 30, 2016 10:21 pm

Sorry you have found yourself to be amongst many who have a GP who is uneducated in the diagnosis/treatment of RLS.
We can verbally express our RLS symptoms in different ways, and indeed feel the sensations in different ways.

This is the RLS Criteria: These five symptoms must be present for a diagnosis of RLS.
You have a strong urge to move your legs (sometimes arms and trunk), usually accompanied or caused by uncomfortable and unpleasant sensations in the legs.

Your symptoms begin or become worse when you are resting or inactive, such as when lying down or sitting.

Your symptoms get better when you move, such as when you walk or stretch, at least as long as the activity continues.

Your symptoms are worse in the evening or night than during the day, or only occur in the evening or nighttime hours.

Your symptoms are not solely accounted for by another condition such as leg cramps, positional discomfort, leg swelling or arthritis. WED/RLS often causes difficulty in falling or staying asleep, one of the chief complaints of the syndrome. Many people who have the disease also have periodic limb movements (PLMs)—jerking of the arms or legs that is often associated with sleep disruption.


If you meet the Criteria, then you need to get treatment.
Go to the top of this Just Joined Forum you will find the section A Good Place to Start = Managing Your RLS. One of the first links will be to a WED Medical Bulletin. This may be of use to guide your GP with regard to diagnosis and treatment, you could highlight the relevant points.

Also, RLS Sufferers really need a higher ferritin serum level than non sufferers.
It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking or likely to be prescribed a DA drug such as pramipezole or ropinerole which is quite often the first line of medication treatment. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

What are you doing at present for symptom relief?
If it was me - I'd return to my GP taking the WED Medical Bulletin with me and ask for treatment as per the Bulletin. Do you think your GP would be receptive to such information. And also ask for the ferritin serum blood test.

If he doesn't take you seriously you may have to consider another doctor.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Tinad
Posts: 3
Joined: Fri Sep 30, 2016 3:05 pm

Re: Hi

Postby Tinad » Fri Sep 30, 2016 11:32 pm

Thanks for the response polar bear. I will definitely look into the blood work. Right now like I said before I'm still smoking pot at night ( never daytime..it makes me to sleepy), besides that I started taking tramacet night time. The doctor prescribed it to me for my back. Figured I'd give it a try. The tramacet don't do much for my legs but it do atop my arms from jumping and the ache that goes with it. I do meet all the criteria above..my husband has the bruises to prove it lol.

debbluebird
Posts: 1545
Joined: Mon May 21, 2012 3:27 pm

Re: Hi

Postby debbluebird » Fri Sep 30, 2016 11:44 pm

If your primary doctor still doesn't get it, then see if there is a sleep doctor in your area, who knows about it.

badnights
Moderator
Posts: 4296
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Hi

Postby badnights » Sat Oct 01, 2016 9:42 am

It's sad but true - - doctors will misdiagnose, sometimes wildly. We have to be aware that this is common, and prepared to re-direct a doctor's thinking when she or he is off. If they make a snap judgement and proclaim something wildly off base, you can still try to re-direct by asking if they can help you interpret what you've learned. IF they're not willing to listen to what you have to say at that point, there's nothing you can do except find another doctor.

Polar bear has given you very good advice - get that ferritin number and understand why it's important (There are some links on the page linked to in my signature line that deal with this).

It would also be good for you to learn what sorts of medications and substances can trigger WED/RLS. You say you;re on other meds but haven;t mentioned what. Something else you;re taking could be making the RLS/WED worse. Did you change anything about 6 months ago? Antihistamines are notorious for worsening WED, only first-generation ones though, the ones that cross the blood-brain barrier (especially diphenhydramine, as in Benadryl).
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Tinad
Posts: 3
Joined: Fri Sep 30, 2016 3:05 pm

Re: Hi

Postby Tinad » Sun Oct 02, 2016 12:16 am

I am on tramacet and medication for my stomach called domperidone. I know gravol is terrible for my rls and I'm assuming the domperidone is having the same affect on me because it's also a anti nausea drug. The killer is until I find out what's going on with my stomach not taking it isn't an option. One of those damned if you do damned if you don't meds. I will take all the advice given. Been thinking about switching doctors because mine has become useless. Hopefully I can get one that knows about rls.

ViewsAskew
Moderator
Posts: 14529
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Hi

Postby ViewsAskew » Sun Oct 02, 2016 4:00 am

I think you are safe with domperidone - it does not pass the blood brain barrier - so some good news! Gravol on the other hand, as you know, not so good! Anything else you can take in its place? And, any other meds you take? Could be something else that is aggravating it :-(.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 4296
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Hi

Postby badnights » Mon Oct 03, 2016 7:51 am

There is evidence that domperidone, which is a a dopamine receptor antagonist that does not cross the blood-brain barrier and therefore only acts on peripheral nerves, nevertheless does aggravate WED, at least in Parkinson's patients. So that may be what is going on with you. (The study is summarized at https://www.ncbi.nlm.nih.gov/pubmed/22922159 - you may need an account to see it, but accounts are free).

The tramacet should actually help your RLS/WED. Might it be possible to get your tramacet dose increased temporarily until you find a WED/RLS doctor?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

ViewsAskew
Moderator
Posts: 14529
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Hi

Postby ViewsAskew » Mon Oct 03, 2016 9:29 pm

Thanks, Beth! I've read in the past that it was safe for us. Glad to be corrected in that notion.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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