Frustrated with it all!

[SquirmingSusan]

Hi all, it's been a while. My RLS is mostly controlled with iron infusions and kratom. Except the hematologist refuses to treat my low iron until the ferritin goes below 30. When my iron is low, I really need to be on methadone or another opioid, but my neurologist says he can no longer prescribe methadone, and he thinks the pain clinic that works with my insurance plan doesn't prescribe it either.

So around and around we go. If I could get iron infusions my RLS is completely manageable with kratom and hirsuta. But since I can't get iron, I really need methadone. There is a pain clinic in St. Paul that I used to go to before Dr. Buchfuhrer took over my care. When I found the neuro who treats my narcolepsy, he also treated the RLS and prescribed the methadone.

I feel like I live in some kind of dystopian reality where doctors are incompetent and no one understands RLS. I'm having a 6 hour oral surgery the beginning of October, and I'm worried about waking up squirming with the RLS. It might be time to fly out to LA and see Dr. B. I also worry about how long he will be in practice, since he's now 70.

Just a little rant, because I know you all understand.

[Dr.Placebo]

Susan, I am just writing a quick reply to say that i read your post and am really sorry for you and what you are going through. that sounds so frustrating and disheartening. It's terrible that you have an effective treatment but can't get doctors to prescribe it for you. I wish I had something useful to offer, but at least know that many of us have the same problem with the medical establishment.
good luck. Maybe one of the moderators will have something to suggest.

Paul

[Rustsmith]

Susan, sorry I haven't responded earlier but I was going through a difficult time at the time of your post.

I had a similar experience as far as getting a doctor to prescribe methadone. My PCP (who had been my prescriber) announced her retirement and provided a list of clinics that were accepting new patients. Long story short, I ended up contacting nine different primary care clinics and each one of them refused to accept me as a patient unless I allowed them to exclude the need to prescribe an opioid. My retiring PCP provided me with a referral to a pain management clinic and they refused to accept me because "we don't treat RLS" even though they treat migraines, back aches, arthritis, etc.

I kept calling and asking others for suggestions and finally found a PA at a small clinic that was willing to prescribe the methadone that I need. He has worked at an addiction treatment center, so he understood that my methadone dose is tiny. He was also familiar with treating RLS and to make things even better, he makes house calls!

So, all that I can suggest is to keep calling, persistence does pay off. If there is a medical school in your area that has a neurology department, try them. Also, check the Foundation's list of providers for your area and if you don't see anyone on their list, try calling the office to ask them for help.

And finally, extend the range of your search. My RLS neurologist is 60 miles away (each way). After an initial face-to-face visit, the rest of our appointments have been by telemedicine, which is good since there is a high mountain pass between us where the interstate highway occasionally gets closed during winter snows.

[badnights]

Hey Susan
If you can get to see Dr B, he might be able to get you your iron infusion. Either he will prescribe it directly and you will have to pay out of pocket to an infusion pharmacy (which is what I did) or he will refer you to a hematology center and you take your luck with whoever you get (have you seen Ann's posts about her positive and negative experiences that way?).

But it's something to try. Probably easier to get iron than methadone.

I feel like I live in some kind of dystopian reality where doctors are incompetent and no one understands RLS.

I fully agree.

And crap, I didn't realize Dr B is 70. OMG. What will we all do?? He's such a life-saver!!

[ViewsAskew]

And crap, I didn't realize Dr B is 70. OMG. What will we all do?? He's such a life-saver!!

I mentioned that to Dr Winkleman recently when we talked about the RLS opioid study they are doing - what was I going to do when DR B retires?????? Move to a new state????

What a freaking mess this can be.

[badnights]

I mentioned that to Dr Winkleman recently when we talked about the RLS opioid study they are doing - what was I going to do when DR B retires?????? Move to a new state????

[SquirmingSusan]

Hi all, I didn't realize so many of you had responded. I just wrote a long update and accidentally deleted it.

I had an appointment to talk to someone at Mayo today, and learned that my insurance doesn't cover them.

My insurance customer service was no help and referred me to a "sleep doctor" who turns out to be a dentist who treats apnea.

At one point I was frustrated and sobbing, and right then my goofy husky threw herself on top of me and demanded tummy rubs.

I'm plugging along on a couple of fronts. Had infusion #4 of 5 yesterday, so the RLS should become more manageable soon.

to be continued...

[SquirmingSusan]

I've been filling out forms for a pain clinic where I was treated before starting to see DR. B. I'm also getting closer to calling Dr. B's office and scheduling an appointment in January, if possible, while airfares are less than $200 round trip. Trying to talk the hubby into a vacation near the beach and a trip to Disneyland.

Also got names of other local pain doctors from a Facebook group for pain patients. I'd just prefer to see an RLS expert and not someone who doesn't seally understand RLS. But I guess beggars can't be choosers.

Meanwhile I'm surviving on ancient hydrocodone and kratom.

[Polar Bear]

I do hope that your iron infusions soon start to kick in.
As for sobbing with frustration.... oh I'm with you there.
Fortunately mine is not because of my rls but it seems that every other aspect that I am trying to sort at present I am being thwarted and the biggest queries and questions always arise when the particular office is closed. (Just been advised that our NHS Pain Clinic has a 4 year waiting list).
I wish you well as you plug onwards, a possible holiday sounds wonderful.

[SquirmingSusan]

Four year waiting list for the pain clinic?! That's insane! Our health care system is insane, but if you can pay out of pocket, it opens up a lot of options. The opioid thing is all about government regulation and the DEA prosecuting and jailing doctors for prescribing pain meds. Our CDC came out with new guidelines making it clear that prescribing opioids for chronic pain is allowed, and they listed all kinds of conditions. RLS didn't get included in that list.

Hang in there and have a good holiday season. Somehow we will persist.

[SquirmingSusan]

Good news for a change! After 4 weekly iron infusions, I can now manage the RLS with reasonable amounts of kratom, and don't have to take the ancient hydrocodone. I've been able to get 4 hours of sleep at a time, which is heavenly after waking every hour or two with the legs going crazy.

And I got information on local pain doctors who treat wide varieties of conditions and aren't insanely concerned with people becoming addicted. For those of you in the US there's a Facebook group called "The Doctor Patient Forum" with chapters for every state, and people in that group will help people find care.

I still want to go to LA to see Dr. B because he's actually an expert on RLS, but this buys me time.

[Polar Bear]

What good news. I'm delighted for you.

[jul2873]

30 seems low for ferritin. I've had a couple of doctors here (Lehigh Valley north of Philadelphia) tell me that 100 is the lowest mine should be. And I've also found that a good level of ferritin and kratom controls my RLS quite well.

[SquirmingSusan]

Jul2873, yes 30 is low for kratom, but is the usual level many hematologists will prescribe infusions.

I've been able to manage my RLS now for a couple months with kratom and hirsuta, but recently had a couple bad nights. I finally got the paperwork into the pain clinic, so we'll see how that works out. I got scared off of flying to California between the airlines cancelling flights and the flooding out there, but if need be, we'll make the trip.