Dr. guessing RLS

[tduester]

Hello, After several blood test with my general dr. he is ruling it as RLS. Let me tell you my story. In January I had a complete hysterectomy due to severe endo, I'm just 36. I did not start estrogen
right away as I was afraid of the side effects. But without it I was very
anxious, irritable, not sleeping well, and getting some hot flashes. I think
I then started Premarin in March. We went on vacation at the end of
April so tanned prior to that. Shortly after we returned I had this almost all over body itching, terrible sensation. I think started at night. I took 3 baths and up most of the night. This continued but seemed to get a little better later in the week. Went to the Dr who diagnosed as hypersensitivity due to the sun. Did I get something on vacation? Gave me some meds to help me sleep- antihistimine. I think a month went by and still having sensations and not in the sun. Back to Dr more blood test. Everything fine. Give it more time. Gave more time sent to
dermatolist, nothing. Back to General now my symtoms have seemed
to change they are more crawly than itchy. This is were he ruled RLS.
It does seem to get better when I move around. However, it was only
that first week it kept me awake. He put me on iron and its been a month now and now the sensations have been both crawly and itchy almost
painful sensations and have moved to my face. They are also on my arms and shoulders and some back. Not so much my legs, which is
wierd. Even at first I don't think they were bad in my legs. I'm so
frustrated with this and not dealing well. I'm so frightened it could be
something causing the RLS. (My sister was just diagnosed with MS about
2 months ago- not the same symtoms though). Tomorrow I'm going
to make appt with neoro as I'm worried sick about this, probably making
matters worse. I had never had anything like this before my hyster so
could it be hormone imbalance? I've read sites on that as well and just
ordered progesterone to try. I'm willing to try anything at this point this
is a terrible thing to deal with and I don't think anyone understands or
takes you seriously. UGGGGHHH. Sorry such a long story. Thanks for any input.

[ksxroads]

Dear duester,

So sorry you are going through all of this. There is some theories that RLS may be related to hormonal function... Since there is no known cause, and it can be primary (genetic) or secondary (spinal injury, surgery, un controled diabetes) we find that we just have to find what works for us.

Sounds as if your doctor is trying. Did he test your ferritin levels (the bodys blood storage levels) people with RLS usually have low ferritin levels way below 50... Anemia will also cause secondary RLS... so you may experience relief after some time on iron therapy. In the meantime there are medications that may help with the symptoms. Here are a few links which you may find helpful.

Mayo Clinic Algorithm - helps your doc find best treatment for you
http://www.mayoclinicproceedings.com/in ... ef=7907crc

So. Cal. support group: comprehensive RLS med information, pages of letters answered by doctor on how to deal with RLS, links to other sites, etc.
http://www.rlshelp.org/

Southern California RLS/PLMD Treatment Page
http://www.rlshelp.org/rlsrx.htm


Are you still on the Premarin? Sensitivity to the sun does not seem to be one of its side affects... My own personal experience was to avoid the estrogen therapy and I used the progesterone cream usb since you do not have an uterus you would use 30mg of the cream each day for a month, then take 4 days off at the beginning of the next month... I helped me with a lot of physical problems.

Antihistimines seem to make RLS worse in some people.

The following medications (dopamine-antagonist agents) may cause significant worsening of RLS in some patients.
Administer with EXTREME CAUTION:

Anti-nauseates—Benadryl, Antivert, Atarax, Bonine, Compazine, Phenergan, Thorazine, Tigan, Trilaton, Vistaril, Reglan; suggested alternatives: Anzemet, Kytril, Zofran

Anti-psychotics—Haldol, Loxitane, Mellaril, Moban, Navane, Prolixin, Risperdal, Serentil, Stelazine, Thorazine, Vesperin

Atypical Neuroleptics—approach with caution: Clozaril, Risperdal, Seroquel, Zyprexa; suggested alternative: Abilify

Anti-depressants—ALL can cause RLS worsening; possible advantage with Wellbutrin, trazodone, desipramine, Serzone, Remereon
Wellbutrin is thought to work by altering levels of the brain chemicals norepinephrine and dopamine. It is not chemically related to other antidepressants such as tricyclics (Elavil), MAO inhibitors (Nardil, Parnate), or serotonin re-uptake inhibitors (Paxil and Prozac).


Anti-histamines—BEWARE of ALL, especially Benadryl & OTC/Rx combination cold/sinus/cough medications: Actifed, Comtrex, Contact, Dimetapp, Triaminic, TheraFlu, Vicks cough syrup, Tylenol PM, Excedrin PM, Bayer PM, Sominex, Unisom;
suggested alternatives: Allegra, Alavert, Claritin, Clarinex


A medical card print out of this information may be obtained From the So Cal RLS Group: www.rlshelp.org

In General:
antidepressants, neuroleptic agents, dopamine-blocking antiemetics such as metoclopramide or sedating antihistamines (including those found in nonprescription medications) may be contributing to RLS sensations

Some have indicated that the following medications increased their RLS:

Steroid Inhalers – Allebuteral


Keep us posted and I know that others will have some further suggestions.

*************Positive Thoughts**********

Hazel

[FidgetBoy]

td- I couldn't tell from your post if your itchy/rash thing happened pretty soon after you started the Premarin? I only ask because I found the following listed as side-effects from Premarin: Skin Chloasma or melasma that may persist when drug is discontinued, Erythema multiforme, Erythema nodosum, Hemorrhagic eruption, Pruritus (itching), rash. I'm not a doctor but you may want to talk to your doctor about stopping the premarin for a while and seeing if your "crawlies"/rash stuff goes away? Just a thought.

[tduester]

Thanks for your reply. Yes, my Dr. Did test my ferritin levels after
my second visit. He told me they were low over the phone but did
not have the record in front of him so he could not give me a number.
I'm still curious though as he said low but not extremely low. He said
sometimes when iron is low it can cause these symtoms. However, I've
been taking iron for about a month now and symtoms seem to be the
same, maybe worse. Seem to be going to my face a little and the feeling
is at this time not crawly but like pins trying to poke through my skin on
my arms and shoulders. This is how it was at first and then turned into a
crawly sensation. Just totally strange. This is the worst thing I have ever
experienced. If it is hormonal, I wish someone would have warned me,
I could have possibly kept an ovary even though it was quite diseased
with endo.

I'm not taking the Premarin and haven't been for a month, since the iron.
He thought it may be that also. I also take two blood pressure meds
Hydrochlorithizide which I've been on for years and a new one since the
hyster is Atenolol which is a betablocker. If you stop a drug how long
do you give to get it out of your system. Also on the progesterone cream
why do you take the 4 days off? Is it true your body produces 40% estrogen after a hyster? That's only if you have ovaries, right? I thought
maybe I was getting to much estrogen. It seems my body is all messed up.

There's no rash with this at all. At times its more like an itch and pinny and at times it feels just like things are crawling on my arms and back. My face sensation almost feels like a feather is being brushed against my face or a hair. Yes, all of these sensations started after my hyster, which was in January. I picked up the Premarin in February but I don't think I started it until March. ( I was a little frightened when I read the side effects of breast cancer) Then I was put on the Atenelol and also continue with the Hydrochlor. both for blood pressure. Then I went tanning and burned a little. Then I went on vacation with more sun. It was about a week and a half later this all started out of the blue. Intensly at night for 2-3 days then changed. Crazy I know. I just can't understand it. I'm at wits end with this. Thanks for your help and advice, I really appreciate it.

[ksxroads]

Dear One,

I emailed you some files and info on menopause that may help you.

Oral iron therapy takes a very long time... that is why it is not always the only treatment option... we tend to have several items in our bag of tricks to manage RLS. However, low ferritin levels is a good indicator of RLS problems.

My suggestion would be to print out the Mayo Clinic Algorithm and take it to your doctor.

Remember I am not a doctor. The DAs or opiods ... if they stop your funny sensations then it is RLS. Now this is my opinion only, DA's do help 80 percent of the population, however they can have some nasty side affects, with all you have going on with your body at the moment, maybe your doctor would think a short term use of an opiod would have fewer side affects, that is if you are not allergic. Remember I am not a doctor!

Okay your meds...I don't have the info right here, but you can check medications at the manufacturers website, or online at places like fda.gov, nih.gov or drugdigest.org You can do an online search using the drug name - side affects - etc - try to visit only those sites which are gov or org type endings ...

I can not stress enough to look at the sticky posts in New to RLS for the medications that make RLS worse. Avoid using them. And print out the Mayo Clinic Algorithm and take it to your doctor!

Dr. Buchfuhrer is a sleep and RLS specialist who is also on the Medical Advisory Board of the RLS Foundation. You can give your doctor Dr. B's information and your doctor can contact him, mine did and it was so helpful.

Mark J. Buchfuhrer, M.D.
11480 Brookshire Avenue, Suite 108
Downey, CA 90241
Tel: 562-904-1101
Fax: 562-904-1105


You can read patient's letters and Dr B's response at http://www.rlshelp.org

Hope some of this helps... Hazey

[tduester]

Hazel,

Thanks so much for your help and for spending your time trying to
find information. So you sent information on menopause. I don't know
why but I can't find it.

How long does it usually take for iron to work? Any idea?

I don't know how everyone deals with this? Augmentation, the thought
of that makes me want to forget those meds totally. I can't imagine
it anyworse than it is. Although today wasn't bad, for whatever reason.
I do still feel it though, just not intense. Does everyone have days like
that?

I don't know how my Dr would react to me bringing in info. I brought
in something to him I found in a book and he pretty much dissed it.
It was on menopause.

I do have an appt Aug 11th with a neuro. What do they usually do on
your first appt? Does, everyone diagnosed with RLS have a MRI to rule
out Secondary causes or how does that work usually.

Thanks,
again.
I would love to see the menopause information you found. Thanks

[ViewsAskew]

Doctors. . . They can be horribly dismissive. And, no one teaches us to stand up for ourselves and say, "Hey! This is important to me. I need you to listen and help me!" But, we have to learn to do just that, and change doctors as needed until we find one who will partner with us.

Iron, if it works, take anywhere from a few weeks to several months to have any effect. The lower your ferritin level, the higher it needs to get. I only increased mine about 15 points in 3 or 4 months, if I remember correctly.

I guess we all deal with it differently. Yes, augmentation is a problem, but if the stats are right (and I think it is mostly a guess), 70% of people who take DAs and can tolerate them well do not get it. And, depending on the study, between 70 and 100 percent of those on Requip have tolerated it well.

I think we all have ebbs and flows in RLS. Sometimes mine used to ebb for weeks . It is also highly changable based on how we are paying attention to it. The more we can ignore it, live our lives, do other things, the less it hold us. The more we give into it, hate it, think about it all the time, they more it grabs us. It's hard to "let go" of it, but it can be very helpful. It's one of those paradox things.

A neuro will do standard neurological tests (balance, etc.) - no MRIs or anything - to establish it is RLS. The only test that "proves" RLS is a history and the answers to those 4 important RLS criteria.

[ksxroads]

Dear T,

Ann and the others helped me so much last year when I was in a similar position. Like the commercial says their support, wisdom and encouragement - PRICELESS

Drs can tend to dismiss our bringing information, however, they are usually more open if we keep it simple and if the information is in the form of a peer review journal article, study, etc. The Mayo Clinic Algorithm should hold more weight in his eyes, I would hope that he would consider looking at it, If not in the future I would look for a doctor who is willing to listen to you. Just my opinion! I went through seven doctors and specialists last year till I found the one who would listen... some of the drs were willing to listen, yet did not feel comfortable treating the RLS long term... some of the drs were dismissive... etc.

I was so thankful that the people here gave me the incentive and courage to take charge of my medical treatment. It is something I still pull on from time to time, as this assertiveness and confidence wanes from time to time! They certainly help this lil ole woman to keep focused - and I don't mean on the RLS, focused on living with a decent quality of daily life! There were times when the RLS had me focused on it as if it were under a microscope - boy did I need to stop and breathe! We are very fortunate that we have such a devotion among the individuals here and the RLS foundation to helping us understand and live with RLS.

Emailed the menopause info to the yahoo email addy that comes up with your profile. If you would like I will send you a private message with the information.


((((BIG HUG Ann, T & the rest)))))

Hazel

[tduester]

Hazel and Ann,

Thanks so much for your help. So are you saying that if you try not
to think about this your symtoms will not be as bad? Is this kindof
psychological or not? I've actually been trying to ignore it or forget about
it but sometimes its just there. Sometimes when I'm concentrating on something it does seem better. That is wierd to me. I've been trying to tell myself to just relax? Is this something anxious people get?

I don't understand why they don't do an MRI in case there's a Secondary
issue to the RLS.

I will keep you posted on the progesterone cream and will continue on the iron. I didn't know it could take so long.

I really appreciate your help.

Hugs,
Tricia

[ViewsAskew]

Tricia, there are about 30 causes of secondary RLS (not sure of the number, I'm guessing - but there are a lot). Most of them, to my knowledge are quite different and wouldn't be determined by an MRI. Do you have a specific disorder in mind that you think you might have, besides the RLS?

RLS that starts before 40 is usually considered primary unless there is something obviously causing it. Yours came on very sudden and seems strong, which is common for secondary. Secondary is often worse than primary, actually. But, many of us have pretty nasty primary, so it sure can be just as bad.

There is a physhological component to RLS only in that its highly subject to being diverted by placing out attention on other things. When we pay attention, I'm guessing we change the chemistry in the brain or change the sleepiness level so that this alters the amount of RLS we have. The best info you can find about this is in Jill Gunzel's RLS book, The RLS Rebel. It does help to relax, but just because it helps in general - the more tense we are, the lousier we feel about the RLS.

[ksxroads]

RLS is wierd! to say the least... before medication, those long horrid nights when I didn't have the energy to move any more, I would turn the tv on mute and lay on the couch reading the captions... and yes I would not notice the RLS... until my mind would wander... I would not even know what I was reading, it was keeping the eye moving and reading each word...

Wish I were more into video games, as others use that as a distraction while flying traveling etc.

When I first began looking for answers I began to micro manage my RLS, as Ann says I became so affixated on will this cause it or does this ... that subconsciously I was making things worse. Bless Ann's heart, she brought this to my attention - That is why I keep coming here, the help and insights of all the others helps me to keep properly focused!

************Positive Thoughts****************

Hazel

[tduester]

Ann & Hazel,

The specific secondary cause I was concerned about was MS. I know
that MS comes and goes, which this does. Also I've read that Dr. dismiss
itchy, crawly skin as an anxious condition when sometimes it turns out to
be MS. It does not keep me up at night now, only the first week. It seemed my symtoms don't all go with RLS and how would
they know it wasn't the secondary cause if they didn't do an MRI. I guess
I'm just worrying to much about it because it took them 3 years to
diagnose my sister with MS. She had constant bladder infections and
vertigo and not one Dr. thought to test for MS. She finally demanded an
MRI. I've heard if you catch MS in the early stages its better. I just don't
want to go through what she's going through even though her symtoms
are different.

However, I do want to mention I started taking the Progesterone on
August 3rd. I think its a little early to tell but I have not had itchy
pinny, crawly skin much at all since Saturday the 5th. But then of course
maybe the iron is helping too because I thought it took awhile for the
Progesterone to get into your system, right? It's been so nice not having it as bad. I'm enjoying life again these last few days, if you know what I
mean. I really don't want this back and I'm willing to try anything for it
to stay away. I've even cut out caffene (pop).

Anyway, I have an appt with a Neuro on Friday and now I'm thinking
maybe I should cancel. What if it is hormone's, he'll think I'm nuts. But
then again what if it comes back again. I have had times its been gone,
the most 5 days. ???? I just don't understand.

Thanks for your help, advice and listening.