What makes your RLS worse?

[Ellen]

I have not been diagnosed with RLS but I definitely think I have it. The only thing that helps me is Ultracet which is milder version of Ultram and Tylenol. I was initially prescribed this for my RA. If you take 2 near bedtime, they definitely relieve the uncomfortable feeling in my legs and its the only way I can sleep without waking up too many times in the night. MY RLS seems to be getting worse so I am going to discuss this with my rheumotoloist on my next visit.

[Sbuckner]

Bad diet, sugar at night, lack of stretching. but if i do it all right and take NAHD, I sleep ok at night...Sherry

[sarah2]

Before I knew that my strange leg sensations had an actual name, it seemed to me that ANYTIME I took a pill to aide sleep I had these weird leg cramps and sensations. Now I know that I have RLS. My legs are SO restless after taking these "sleep aid" pills that the exact opposite happens - I STAY up all night. Ive experienced it with Ambien, Excedrin PM, and Simply Sleep - it ALWAYS happens!. The higher dosage, the worse the RLS. Its miserable.

[Laurajo534]

I am new to respond to this board but have been reading what everyone else has been writing. I was up until 4AM this morning due to my rls, I think the ham I ate for dinner is what caused me to hurt more than usual, I guess I had to much salt, I took medicine the doctor had prescribed and rubbed my legs with a special cream and nothing brought relief until in the early hours when I finally went to sleep.
I would like to know what meds work better for most people, I have been taking Alprazolam or Mirapex, these are the only ones that give me any relief at all. Sure would like to find something that works better without these side affects.
Thanks[/b]

[Walking After Midnight]

Laurajo....for me it's Vicodin and Klonopin.
I've been taking Tegretol for some time, daily. I'll tell you though, it still makes me sick under the right circumstances...like on an empty stomach. It will ruin half my work day. My Neuro smiles and says, real peppy..."Just take some food with it". Well life's not like that all the time for me.
So I think I'm done with it.
Klonopin is the miracle drug for me...but a lot of people do not like anything about that drug. So it's not affecting me the bad ways it affects some.
I think you have to keep on trying different things you can get your hands on, until you find a good one.

Good Luck
God Bless.

Randy

[carolynsuetoo]

Did you think that you could pin point somethings that made RLS worse, then realize that it was just as bad with or without. I have a couple of times. For example, alchohol, thought that made it worse, then thought it didn't.

I have heard about the cold medicines, I can't remember if it was the anihistimines, or another ingredient, such as a decongestant. I did think it was a culprit at times, then not.

I have been using a nose spray a lot lately, nasal decongestant, and it doesn't make my RLS worse.

I sure am sorry, friends, that any of us have this problem. I wish you peaceful sleep and stillness of limbs. God Bless!

[tazzer]

I have a question, I know if you have arthritis weather changes affect your pain, but can the weather affect your RLS too? The weather here for the past 3 days has been rainy and nasty and my left leg has been killing me. The medicine, even the pain medicine and I take oxycontin 10mg doesn't help for very long. Any thoughts?

[Guest]

Tazzer...
I haven't seen a relationship between weather and worsening of RLS. I am sure that it is different for each one of us. RLS had almost disappeared a couple of time in years past, but I remember when it came back to stay....I was at my cousins in Scottsdale, AZ. Back then I didn't have anything to take...and every evening I went through episodes of RLS....
Isn't oxycontin an addictive drug? I wasn't aware that it was being used to help with RLS. Although, it isn't like RLS is going to go away, then you have to get off Oxycontin, because I am sure it never goes away, maybe sometimes it goes into some sort of remission, possibly? Does anyone agree with that?
We are ginny pigs, but at least they keep trying to find us somehelp. If my taking or trying presriptions, testing the water, so to speak, might help my children if they start complaining of RLS symptoms.
I have to go to class tonight, so I have to go. I love hearing from RLS that someone replied, I only wish I could help more.
Keep the faith that someday, RLS will be gone!

[ViewsAskew]

Hi Guest. RLS can go through periods of remission for some people - wish we all could have that happen, huh? No one really knows why. It always seems to come back, though. One hypothesis may be that some people who experience this may have secondary RLS and they have resolved the primary issue, without even knowing RLS was secondary to it. Other hypothesis? Hormones have changed, diets changed, we stopped doing things that bothered it, etc.

Oxycontin is an opioid. All opioids appear to be helpful to most people with RLS. All opioids can be addictive, as can many other drugs that people take like Klonopin. All of these drugs should be taken with care. If used correctly, the likelihood of addiction is very small. One doctor did research regarding the benefit/risk ratio and determined Methadone and levorphanol are the best opioids to use in this class (most benefit, least risk), but it may be hard to convince doctors of this.

Opioids also cause physical dependency, which makes it difficult to stop the drug (this also applies to many other drugs like SSRIs, for example). As you noted, most of us who get to the point where we need daily drugs will need them for a long time to come. While withdrawal from dependency is not fun and may take several weeks, at least I'll have had several years of relief. For me, it's worth the trade-off.

Per the weather, it's only anecdotal, but that's one of the reasons we are all here! Many of the people here do find that the weather influences their RLS, as do hormones, and diet.

Amen to keeping the faith.

[ksxroads]

And another AMEN to keeping the faith!

Just thought I'd post, each spring as farmers burned fields, sprayed chemical insecticides and fertilizer my RLS would be worse.

Last week I passed four different areas where they were applying liquid fertilizer. Due to dry conditions, burning of fields has been very limited. That night I experienced full body RLS, even with medication. So I am certain that some of my problem is related to chemicals. Just a random mention of what makes my rls worse!

Hazel
rowing today with all she has...stirring up hope alongside the others

[Helen518]

Hi - I wanted to report that I took Mucinex a few hours ago in desperation. I usually avoid cold meds like the plague, but this cold is truly kicking my butt.

So far, the mucinex has not bothered my RLS at all!

I take methadone for my RLS and pharmacist said it was OK to take these two meds together. Hope this info helps someone thru the cold season!

[Betty/WV]

Hello all: Just read all the posts under this subject. As for me I don't notice coffee affecting me. I usually drink 2 cups in the morning. But I don't dare eat ice cream, a sure thing the RLS will go bananas.

I don't even try any over the counter meds., unless it is on the list of ones that don't affect. RLS. Stress, and being overly tired, or walking alot is bad for the RLS.

I was given benedryl once when I had a heart cath., I tried to tell the nurse I couldn't take it,(she was putting it in my IV) she gave it to me anyway and for about 3 to 4 hrs after the cath. I was one crazy RLSer. And you have to lay still for along time after a heart cath or you could bleed really bad. My left leg was mostly affected, and the right groin was used for the catheter. My leg was flying up in the air all by itself, with no help from me. That will never happen again because I will get off the table or do whatever is necessary to keep them from giving me anything that aggravates my RLS. Plus I carry a Medical Alert Card for RLS. And always have the hospital or doctor copy it and keep it in my records. Goes to show, they don't read those things.

Just my thoughts on the matter. Wishing you all relief and peaceful sleep. BETTY/WV

[Helen518]

Betty - thanks for sharing your story - where do you get a medical alert card for RLS? I'd love one. Docs and pharms are so unknowing about things that aggravate it!

When I was first having symptoms during pregnancy my OB told me to take benedryl. It was one of the longest nights of my life. I haven't touched it since then. I try to educate all my docs now. I recently saw a new psych adn she was unaware of any of the info I shared with her!

[mackjergens]

I think this info needs to be posted to the main discussion board every so often.

This info was copied/pasted from www.rlshelp.org
you should print this info and keep it with you at all times
__________________________________________________________

(6) Drugs and Foods to avoid to improve RLS
This section will discuss various drugs and foods that may worsen RLS. Things that cause worsening of RLS in some patients may not bother others in the same way; in fact, others may even be helped by these same medications or foods that worsen others. Please free to email us with any foods or drugs that worsen your RLS problems. Keeping a diary or log of foods, medications taken and worsening of RLS may also be helpful to determine what might be affecting you.

Ice Cream
Some patients have found that ice cream (all flavors) cause worsening of RLS. Avoiding this food eliminates significant RLS worsening, especially in patients who eat a lot of ice cream. The cause of this relationship is unknown. For a possible explanation of why ice cream may exacerbate RLS, click here for a discussion of avoiding Mono and Diglycerides to help RLS.

Caffeine
Drugs and foods containing caffeine are very common. Coffee, tea, and colas are all commonly known beverages which contain significant amounts of caffeine and can cause worsening of RLS symptoms. Chocolate can also contains caffeine.

Many medications use caffeine in their formulation, especially pain pills, so you much check them out one by one. Some common medications with caffeine include: Cafergot, Darvon, Esgic, Exedrin, Fioricet, Fiorinal, Migralam, Norgesic, Wigraine, Anolaor, Butalbital, Femcet, Medigesic, Pacaps, Repan, and Synalgos-DC.

Antihistamines
These include the common allergy and cold remedies, most of which are available over the counter. Examples are Actifed, Benadryl, Chlortrimeton, Comtrex, Contact, Corcidin, Dimetapp, Drixoral, PediaCare, Sinutab, Tavist, TheraFlu, Triaminic, Tylenol (flu, cold, PM, allergy), Vicks. Note that many cough syrups may contain antihistamines, especially if they are recommended for cold or flu symptoms.

The newer, non-sedating antihistamines, Allegra, Zyrtec and Claritin are generally better (and some RLS patients can take these without problems), but can be just as bad as the over the counter medications.

Antidepressants
The tricyclic and serotonin uptake inhibitors (see Antidepressant Medication section above) can cause significant worsening of RLS problems. Paradoxically, some patients have noted marked improvement while on these medications, making it harder to understand why some patients worsen and others improve.

Antinauseants
Medications to treat nausea can worsen RLS symptoms. This class of drugs includes: Anitvert, Atarax, Benadryl, Bonine, Compazine, Phenergan, Thorazine, Tigan, Trilafon and Vistaril.

There is an antinausea medication only available in Canada and Mexico called Domperidone (available over the counter as Motilium 10 in Mexico) , which does not cause worsening of RLS symptoms. This can be obtained by Americans over the internet from Canadian pharmacies (example is canadameds.com or www.canadapharmacy.com) with a valid prescription from an American medical doctor.

Reglan (metoclopramide) is an anti-nausea agent that is also used to prevent reflux and has significant anti-dopamine activity, so it should be avoided.

There are two newer anti-nausea medications available in t he USA, Kytril (granisetron hydrochloride) and Zofran (ondansetron hydrochloride) which do not affect the dopamine system and thus should be safe for RLS. The only problem with these medications are that they are very expensive.

Cough syrups
Most OTC cough syrups are fine to use for RLS patients if they are just simple cough medications (like regular Robitussin which contains dextromethorphan and guaifenesin). When they are combination preparations (also good for colds, flu, etc.) they likely contain antihistamines which as noted above, worsens RLS. So, check the ingredients carefully before you buy any cough medication (OTC) as they may contain harmful ingredients.

The prescription cough syrups usually contain a narcotic (codeine or hydrocodone). The most common one prescribed is Phenergan with codeine, which contains the anti-nausea agent phenergan which usually worsens RLS. It is countered by the presence of a small dose of codeine, but this may not be enough to cover the RLS worsening effects of the phenergan. Tussionex is an example of the hydrocodone containing syrups. It is combined with chlorpheniramine, a potent RLS worsening antihistamine, but the hydrocodone is at a high dose of 10 mg which usually will overcome any worsening effects of the chlorpheniramine. Hycomine is similar to Tussionex but Hycotuss does not contain any RLS worsening medications so it may be a better choice.

Antipsychotic medications
Many of these drugs are similar chemically to the anti-nauseants (in fact many are used as anti-nauseants). They can worsen RLS just like the antinausea drugs. This class of drugs includes: Clozaril, Compazine, Haldol, Loxitane, Mellaril, Moban, Navane, Prolixin, Risperdal, Zyprexa, Serentil, Stelazine, Thorazine, and Trilafon. Also, lithium, a drug which is very helpful in the manic-depressive disorders, can worsen RLS.

Bladder Control drugs
We have gotten some case reports of worsening RLS with drugs such as Ditropan. These drugs should thus be used with caution in RLS sufferers.

Alcohol
Alcohol had been found by many RLS sufferers to cause worsening of their RLS. The amount that does this can be very small in some cases. Individual tolerance can vary considerably (many may not be bothered at all).

(7) Pregnancy and RLS
Pregnancy can cause a worsening of RLS (in at least 50% of patients who have RLS and become pregnant) or be the first time that a patient experiences RLS symptoms. It usually occurs in the third trimester and has been reported in up to 12% of all pregnancies. 10% of women will have their first experience with RLS during pregnancy. The RLS symptoms will usually go away after the pregnancy, then often come back later in life. Various problems such as iron or folate deficiency have been postulated as causes, but the real reason why RLS worsens with pregnancy is unknown.

If the symptoms are severe enough to warrant drug therapy, then the sedative category of medication has been used for treatment (with the approval of the patient's obstetrician). Many RLS specialists will prescribe the opioid category of medication during pregnancy, due to their safety in pregnancy.

The risk of RLS medication in pregnancy is as follows (Category A,B,C,D,X, where A is the best and X is the worst and should never be taken during pregnancy; Category A drugs are quite safe and have a proven track record in pregnancy, Category B drugs have limited data and experience and should be used only if clearly needed, Category C drugs generally have no adequate or well controlled studies in pregnant women and should be used only if the potential benefit justifies the potential risk to the fetus):

Pregnancy Risk Category
Drug Name

A
None

B
Pergolide (but limited data), Ambien, Percodan (short term use), Dostinex, Ambien, methadone (low dose), Percocet, Percodan, OxyContin

C
Mirapex, Requip, Sinemet, Ultram, Darvon (short term use), codeine (short term use), Vicodin or Lortab (for short term use), Sonata, Lunesta, Tegretol, Neurontin, Catapress

D
Xanax, Klonopin (and most benzodiazepine sedatives),
Darvon, codeine, Vicodin, Percodan, all for long term use, methadone (higher doses)

X
Restoril


Pregnant women should be checked for anemia and proper iron supplementation as indicated. Magnesium (used for treatment of toxemia of pregnancy) has recently been looked at for treating RLS, but this is only in the preliminary stages.

Nursing mothers can be treated with Darvocet (Darvon). Small levels of this drug will get into the breast milk, but no adverse effects have been noted in the infants getting the breast milk. Sedatives do get into the breast milk and can cause lethargy in the infants, so this class of medication should be avoided in nursing mothers. Dopamine agents may decrease lactation (milk production).

For more information on the risks of drugs in pregnancy or with breast feeding check out Motherisk Program or the Organization of Teratology.

(8) Quinine
This drug rarely (less than 5%) helps RLS and is only included on this page to help avoid RLS sufferers from receiving this drug for their disorder. It is probably one of the most common drugs prescribed by doctors unfamiliar with RLS when they hear the RLS complaints of their patients. This inappropriate treatment occurs because the RLS symptoms are confused with leg cramps for which quinine is the correct treatment.

We have received several reports from RLS sufferers that quinine has helped them, but we cannot be sure whether they have RLS and leg cramps, or in fact only leg cramps. I have treated several patients who definitely had RLS and found that quinine helped (sometimes very significantly) their RLS, but this is still a very small minority of RLS sufferers. As with many of the treatments above, some remedies seem to help only a few RLS patients and therefore cannot be recommended to the majority.

(9) Other RLS Information and Associations
Summer RLS
Many patients have found that there is a seasonal variation in their RLS. They do fairly well for most of the year, then start to have worsening of their RLS symptoms in the late spring or early summer. This generally will occur with a change in the weather to hotter and more humid. There is of course, no understanding of why this phenomenon occurs.

The treatment of this increased RLS in the summer is to increased the dose of current medication. If that does not suffice, then addition of other classes of medications may be necessary until the fall months.

Menstrual Cycle RLS
There is a subset of female RLS sufferers who find that their RLS symptoms wax and wane with their menstrual cycles. Generally the RLS will worsen before menstrual flow and abate several days after. This seems to follow the pattern of PMS. This association is not understood at all and brings up the question if RLS is associated or related to PMS or other hormonal conditions (such as RLS in pregnancy).

We have also seen changes during the onset of menopause and after menopause. This can vary quite a bit amongst female patients with RLS. Some RLS sufferers will have their RLS complaints get better with menopause, and some have even noted worsening if placed on estrogen replacement therapy.

[ViewsAskew]

Betty - thanks for sharing your story - where do you get a medical alert card for RLS? I'd love one. Docs and pharms are so unknowing about things that aggravate it!

There are several places you can get them. The San Antonio RLS support group sells them - just for the cost of postage, I believe. They are very well done.

Also, you can print one from the South Cal. Support group's website at www.rlshelp.org. You may have to hunt around to find it as the site isn't as user friendly as some other sites.