yes, i'm new . . .

[shadsma]

. . .and not really sure how/where to post this but here it is. i have just been formally diagnosed and am looking for help. i am a self-injurer (cutter) and have been for 10+ years. a couple months ago i told my psychiatrist about my restless legs which had been getting worse over the previous few months. she ordered a blood test for ferritin levels which came back as 28. she could not determine the cause of the restless legs-she did not feel it was caused by the cutting as i had been doing it for so many years. she sent me to my GP for treatment. my GP initially didn't want to treat the restless legs and basically told me to stop cutting-easier said than done-and eventually prescribed me 325 mg ferrous sulfate 1x/day.

two months on and no relief of symptoms has led to me to having my ferritin levels checked again (test came back as 65 last week). she has formally diagnosed me as having RLS with no known cause (although I suspect she is still banking on my low ferritin level as being a result of my loss of blood from cutting). as a result of the latest test i am now taking 325 mg ferrous sulfate 2x/day plus prescription Trazodone to help me try to sleep. my psychiatrist recently switched me from antidepressant drugs Effexor and Wellbutrin to Zoloft and the antipsychotic drug Risperdal for my depression which i was diagnosed with 4 years ago. i am just really confused and tired and tired of taking Tylenol 3-4x/day to try to get some relief.

sorry if this is confusing but i just don't know what to do about this. i am worried about taking higher levels of ferrous sulfate and continuing to take so much Tylenol although my GP does not seem bothered. as for the cutting I don't see myself stopping anytime soon. . .

[Polar Bear]

Welcome to the site.
It is clear that your doctor is not familiar with treating WED/RLS. Am I understanding correctly that you are talking about your psychiatrist. You need to provide good relative information and hope that he/she is willing to be accepting of this. Or else, find a good WED doctor.
I'm lucky, my GP doctor accepted my print outs from the Foundation and indeed emails to myself from Dr B (expert).
Have you approached your GP with regard to WED.

I don't know where my WED came from, many of us don't. It can be genetic or primary.
You do not appear to be on any medication for relief of WED symptoms.
You take a sleeping aid and antidepressants.
Antidepressants very commonly make WED worse, they can trigger WED in the first place.
Your ferritin is increasing and that is good.

Tylenol is paracetamol, and I don't believe this provides any relief for WED symptoms.

http://www.mayoclinicproceedings.org/ar ... 4/fulltext
This link is a source of information on treatment, would your psychiatrist or GP be cooperative.
At the very least it will provide you with information.
I would suggest that if you take this to your dr - that you highlight the relevant area, i.e. treatment, medications, etc.
And remember also that the front line medications which are mirapex and requip should only be taken once your ferritin has reached 100.
You need to highlight because the entire document would be too much for doctor at an appointment, you want to make it at easy as possible for doctor.

I find it hard to understand that a doctor who knows anything about WED/RLS can diagnose it and not provide treatment relief.
And personally, feel that your GP may be the place to start.

[ViewsAskew]

The good news is that there is no worries to your health about taking the ferrous sulfate at a higher level. But, you are right to be concerned about taking acetaminophen- it isn't good for your body, especially when it likely isn't helping much.

I don't know how much you bleed when you cut - my guess is that it's not enough to lower serum ferritin significantly, but I do not know. I did a quick search and couldn't find anything definitive. If you are younger than 35, it's more likely, to me, that you simply have primary WED/RLS, which often comes with low serum ferritin.

Is your psychiatrist aware that some antidepressants can cause/worsen RLS/WED? It's possible that the switch to the new ADs is responsible.

It sounds to me as if this is significantly affecting your life and you need more to help you than the iron supplements. It's important to get your iron to at least 100. There is some research that points to the importance of vitamin D and taurine in treating anemia. I know that our low ferritin isn't the same as anemia, but several people here have correlated low D to symptoms, and recently someone else used taurine to help. Neither should hurt you if you try them. I use D and it helps and recently started taurine (too recently to tell if it's helping).

There are other non-pharma approaches. In terms of vitamins and supplements, magnesium and vitamin B complex are both often cited as helping. It's worth a try. Moderate, regular exercise is also shown to help - sometimes the symptoms worsen when you first start, but they usually improve after a week or two. Massage is also known to help, as is doing stretching or yoga. If none of these things help enough, you have to decide if you want to try more potent medicines, either pharmaceutical or OTC.

I've had this since I was a kid - I get how disruptive it is and how both scary and annoying it is when it escalates. There are many posts here that can help you both cope and find ways to deal with it. And all of us - we all get it, because we live it, too. Welcome to the board.

[shadsma]

thank you for the information and advice, sorry it has taken me so long to respond. I am seeing a new psychiatrist this week (my old psychiatrist is moving) and i hope to get answers re: psych drugs and their relationship to rls. I am also looking into seeing a new gp. the one I have currently has never been much into listening or treating any of my symptoms.

as for it being hereditary I have 1 aunt and 2 cousins that have been diagnosed. so I dont know if it could be considered hereditary or not. like i said i am taking ferrous sulfate and Tylenol to try to help the symptoms and am crossing my fingers that they do so. im going to continue to research this site and hopefully can get some relief soon. . . I hope this will be me soon> : )

[badnights]

One aunt and two cousins is enough to say it's in the family. It would strengthen a diagnosis, but ultimately does not affect how you're treated.

One of the most important things for you to consider is your AD and AP meds. (By the way, depression and WED often co-occur, so your situation is not unusual.) What I wonder is how your WED/RLS started. Was it sudden? Did you have it for years in an intermittent or very mild form, or did it pop up out of the blue? Or both - did it suddenly get super-worse? And did that change coincide with the change in AD to Zoloft, or with the introduction of Risperdal? Wellbutrin is one of the few ADs thought to be WED-friendly. Not everyone with WED has a bad effect from ADs but those who do seem to have a strong effect. You may be one of them. Both Zoloft and Risperdal are listed among the drugs that worsen WED, and you're taking both of them. If you're susceptible, that might be why it all flared up.

If the worsening coincided with one of those drug changes, to confirm it, you could stop the one or two drugs that you think might be causing the WED and see if it goes away. This is not ideal, since it leaves you untreated for depression meantime; and if you were to do it, you would have to do it in partnership with your psychiatrist. In any event, you have two choices if you decide the WED might be caused by one or more of your other meds. One is to treat the WED that is caused by the AD/AP meds with more meds. Two is to try to find AD/AP meds that do not worsen your WED. I recommend wherever possible to reduce your total drug load, and to avoid adding drugs if at all possible. Explore the other anti-depressants and anti-psychotics with your psychiatrist.

One thing that is hard for a lot of us to understand, and I'd like to save you learning the hard way if I can, is that you don't often get answers from your doctors about this disease, instead you sort of have to point them to the answers. I am actually impressed with your GP, who must know some of this since she has immediately put you on iron supplements, without putting you on DAs first. Maybe she knows the terrible trouble WED patients have been having with DAs and doesn't want to start you down that route.

But your psychiatrist - and any average Joe Doctor, even a specialist - is not likely to know any of this. You will probably have to point him toward the information, so it would be best if you prepared yourself. Start with the WED Foundation's brochure for healthcare providers (don't worry, it's really good for patients too): WED/RLS Medical Bulletin: A Publication for Healthcare Providers. I recommend you have a printout of the brochure handy during your appointment, and offer him a copy. ("Would you like this? I've read parts of it. ... yadayada") Read it before you go, and highlight the parts that you think are especially relevant to you - as Polar Bear said, he won't have time to read the whole thing. eg. the paragraph on page 5 that reads

It is also helpful to examine other substances the person is
taking that may exacerbate his or her WED/RLS symptoms,
including both over-the-counter and prescription
medications (Table 6). Any dopamine-blocking agents can
aggravate WED/RLS, and these include almost all the
neuroleptics plus many anti-nausea agents. Many antidepressants may aggravate WED/RLS symptoms.
However, bupropion (Wellbutrin), a dopamine-active
antidepressant, may prove to be the most preferred
antidepressant.39,40 Among over-the-counter medications,
centrally active (mostly sedating) antihistamines may be the
greatest culprits. These are often found in over-the-counter
medications to treat allergies or promote sleep.

Also Table 6 that lists the meds that can aggravate WED.

If you end up treating the WED because adjusting your other meds is not feasible, your psychiatrist or GP will (after looking it up) recommend one of the approved meds, which are the dopamine agonists (pramipexole/Mirapex, ropinirole/Requip, and the Neupro/rotigotine patch) and one anti-convulsant patch (Horizant/gabapentin encarbil). The DAs (dopamine agonists) should not be taken until your ferritin is over 100, and that tidbit of information is not likely to be in their manuals or online databases. (It is in various medical-journal papers; some of them can be found by following the second link below my name at the bottom of all of my posts.) So if he/she suggests you go on a DA, tell him/her that you heard that's a bad idea as long as your ferritin is lower than 100. You can point them to the Buchfuhrer paper if they want a reference for that.

Just so you know, there are lots of options if the approved meds don't work out: there are more anti-convulstants (Neurontin/gabapentin, Lyrica/pregabalin) and a whole slew of opioids. There are also tricks and techniques and life-style changes. Viewsaskew has mentioned some of them. I'm another person who takes vitamin D - I take 3000-4000 IU daily - you might ask to have your D levels tested next time you're being sent for blood work, because apparently a lot of North Americans are deficient. Another lifestyle change to consider is eliminating coffee - for some people, this means all caffeine, but for me, it seems my WED is not affected by chocolate or tea.

No matter what you do with your other meds ( - even if you find out it is them causing the WED, and switch them to something else that does not cause WED) I advise you to keep taking the 2 x 325 ferrous sulfate per day. After 3 months on the two pills, get another ferritin test. If it's over 100, you can consider stopping, but I suspect you will then begin to feel the WED again. As soon as you do, get your ferritin checked again. If you're like the rest of us, it will be below 100 again, and it will keep dropping unless you're supplementing. No one has figured out what dysfunction causes this inability of our bodies to retain iron, but there's a direct correlation between low ferritin and strong WED/RLS symptoms, this has been shown in the medical literature (also in second link after my name), not just my opinion. Personally, I notice within 2 days - only two days! - if I stop taking my iron. I've been taking same as you 2x325 ferrous sulfate daily for 3-4 years now. That seems to be the amount I need to take to keep my ferritin above 100. And it never gets above 130, even though I've been taking it for over 3 years.

Trazadone is a good choice. It can enhance sleep as well as have an AD effect. You are not likely to notice its benefit as long as you are being aggravated by the worsened WED, though. It is not enough by itself to get the WED under control.

Doctors don't always know the best course of treatment right off the bat for any disease, and WED is particularly hard for them because the treatment differs for every one of us plus it's so poorly publicized in medical school. Hopefully your WED problem is going to be solved by adjusting the other meds. That won't make your life perfect, but it should make it a lot easier to live. Your poor GP obviously became a GP and not a psychiatrist for a reason; whoever says "just stop doing it" fails to grasp the essential nature of the problem.

[shadsma]

thanks so much for the info, it is much appreciated. I had another serum ferritin test done, it is at 26. this is after 4 mos of taking 325 mg. ferrous sulfate. apparently my last test results were incorrect, I don't know why. I also don't know why my results are essentially the same as my original test results.

as for my rls onset, I have had symptoms for years but have gotten worse in the last 3 months with the worst being in the last 5 weeks or so when I was put on Zoloft and Risperdal. I did see a psychiatrist but did not talk to him about new meds, I really don't know why. perhaps because he is just a temp doc and I will have a new psychiatrist soon. I talked to my GP, she told me to continue with the iron supplements but was reluctant to prescribe any new meds because I am on a lot of other meds. I am to be tested for serum ferritin levels in another 3 months.

I guess I am between a rock and a hard place but from where I stand my best bet is to talk to my new psych and see if my meds can be changed. also wait another 3 mos to see if my ferritin increases and go from there.
all I know is I still don't have any relief. wish me luck. . .

[ViewsAskew]

Are you taking the iron once a day or multiple times? The best results usually require taking it 3 x a day. It's also best taken on an empty stomach and with an acid, such as with orange juice or a vitamin C supplement. If you're already doing that, pleas ignore!

My guess is that Risperdal is a possible problem. Any anti-psychotics are usually not WED friendly. Here is a link to a research article about it: http://www.ncbi.nlm.nih.gov/pubmed/12107855

If that drug is really helping, you have a tough decision. But, if it's not helping that much or if there is an alternative that is more WED friendly, it may be a good place to start. It's likely best to try one drug at a time. Zoloft could be making it worse, too, but there is a much lower chance it is causing you issues.

When do you see your new psych?

[badnights]

yikes. Its' alsmot sure to be the AD and AP meds that are making it worse. You simply have to talk to your doctor about that. the new psych, ok, but I hope it's soon.

Your ferritin might take a while to rise; try doubling up the iron to twice a day, you might see some results then. WED bodies consume iron in ways other bodies don't, that's why your ferritin is staying low despite taking iron, but no one knows why.

[shadsma]

thank you all again for the info, I am in the process of getting a new GP and have seen my temporary psychiatrist this last week. she changed the dosing of my Risperidone so I am taking half in the am half in the pm. it seems to be helping a little bit but I still find myself having trouble falling asleep. now I have to wait 2 more months to see if my ferritin levels increase or not. if it doesnt I don't know what ill do. maybe increase my Trazodone level I don't know. thanks again for the help. : )

[ViewsAskew]

I found that I became "used to" trazedone when I took it daily. Initially, I needed very little. Then I needed a bit more to do the same. I had to increase my dose every few days.

So, I stopped taking it daily. I only took it when I really needed to fall asleep. But, I can set my own schedule and many people cannot!

One category of drugs that many of us find really helps with the sleep and also often helps with WED is called alpha 2 ligands. These include gabapentin, gabapentin encarbil, or pregabalin. There are others, too, but these are used most frequently. They often resolve the sleeplessness. You might want to ask if this is something your doc thinks you would benefit from.