Pain Management For Restless Leg Syndrome In Northern Ca

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Lori Says:

My father is 84 years old and he is a very “tough man” that has an extremely high tolerance to pain. Over the years he’s had different medical conditions that would require pain medication is like Norco or Percocet whatever and he was given them but he rarely took them and now he has been given restless leg syndrome diagnosis and he is in excruciating pain. I mean excruciating to the point where he is screaming in pain crying and just can’t take it and now he’s thinks that he can’t live his life the rest of his life in this excruciating pain. And he has been on Norco 5/325 for over 20 years one twice a day is the directions because he has a couple of chronic conditions that caused him pain but the amount of Norco he’s been given over the last 20 years has been sufficient and he hasn’t taken it every day - only when he has a flareup.

Well we’ve had a miserable two months where my we’ve had to call the paramedics 911 four different times in a three month period and the only thing that they do for him at the emergency room is give him one Norco 10/325 pain pill while he is literally in the emergency room and they do not send him home with any medication and it’s a waste of time and money because it cost $300 every single time we have to call the ambulance and $100 for co-pay for the emergency room visit.. We are at our wits end and do not know what to do. He is suffering so much and he’s getting to the point where I think he wants to die because he can’t take it and the medical community is not doing anything to control his pain adequately.

This is all because of these schmucks who are falsely claiming they have pain so they can obtain narcotic pain prescriptions because they want to get high or loaded or whatever they feel euphoric when they take this medication and then there’s people like my dad who is in excruciating pain who cannot get an adequate amount of pain medication to control his excruciating pain and I just don’t know what to do anymore I don’t know what to do to help him.

I have tried every single type of home method therapy that I can think of and that I have researched and googled like putting him into a really hot bath so his legs will try to relax while he’s in the hot water, I massage him his legs up and down and I can feel the zap zap zap of shocks of his nerves going down his legs and he says that every time he feels the zap zap zap he feels like he’s being stabbed repeatedly and it is extremely disheartening and upsetting for me as a daughter feeling helpless because there’s nothing I can do to help him. I seriously have no idea what to do to get his doctor to prescribe a stronger pain medication that is adequate and that will control his pain.

I am a chronic pain patient myself so I know that people who have chronic pain never have an absolute pain free day ever.. all that we can wish for is that he is on or given a medication that makes the pain tolerable because he will never have an absolute pain-free day when your truly in chronic pain the most you can hope for is to get the level of pain to where you still have some quality of life some sort of relief. I don’t know what to do and how to get him the medication he needs and I also wanna get a second diagnosis or second opinion whatever because I’ve researched it, and people with “Restless Leg Syndrome” do not scream in pain the way he is screaming in pain on a daily basis and it becomes much worse at night. So now it’s like I’m having to spend you know hours and hours on end in the middle of the night sitting with him doing anything I can possibly do to try to alleviate and help lessen his pain but I’m at a loss because there’s only so much you can do at home especially when I’m not a doctor and I don’t have the ability to prescribe him a pain medication that will be adequate that can control his pain to a level to where he can function and still have some quality of life because he has absolutely no quality of life at this point whatsoever..

He’s mentioned several times in the last week that he thinks he’d rather be dead than live with this and I am very scared and afraid he’s going to kill himself or something because he just can’t take it anymore he can’t take living in this excruciating pain and I completely and totally understand exactly where he’s coming from because again I am a chronic pain patient from a motorcycle accident that happened when I was 19 years old ever since then my life changed forever.

I’m 52 years old now and I still suffer the effects from that motorcycle accident so many decades ago.. I have just learned to live with it and I fortunately I am on medication daily that controls it to the point to where I can still have some enjoyment in life and where I can function.. for years I was taking Dilaudid and Fentanyl, Demerol, Morphine - all schedule II narcotics that made me not be able to function whatsoever.. I couldn’t drive a car, I couldn’t cook dinner because I was so sedated I might burn the house down. I mean a myriad of things that I was unable to do and my pain management doctor about 15 years ago switched me to methadone which was the best thing that ever happened to me. Because ever since then I have not had to take any of the narcotics mentioned above that I had been forced to take. And yes, I do get breakthrough acute pain from time to time and I have immediate relief oxycodone pills for when that does happen but it is rare and I don’t have to take them hardly ever at all because again the milligrams of methadone that I am on which is very high (213 mg a day) controls my pain very very well. I can function normally, I can drive, I can cook, I can work, I can clean house- I can do everything that a normal person can do and I know that methadone is probably not the type of medication that my father should be on. I believe he should be on maybe OxyContin 20 mg one twice a day some thing that is extended release and that he only has to take one every 12 hours.

We live in Rio Vista California which is right outside of the San Francisco Bay Area. My father Is a Kaiser patient and they are useless helping him. I believe what we need is a pain management doctor with deals with this type of thing and knows the truth from people that are really truly in pain and they have serious condition versus people that are making it up things saying they have this pain or back pain just to obtain strong narcotics which is in my book completely 150% wrong wrong..

I'm praying that someone that reads this post will have some helpful advice for me for anything that I can do to help my dad because we are at our wits end and I’m afraid my dad‘s going to give up and just die. and I need my dad I need him to live.. We lost my mom on. April 6, 2020 in the beginning of the pandemic after a long battle with Alzheimer’s and dementia and ever since mommy died my daddy is gone completely downhill..

He was her 24/7 caregiver and they were married for 60 years and he used to say that he only has to live long enough to make sure that he can take care of mommy after that it doesn’t matter. Well mom is gone now and he’s at the point where I think he’s ready to go as well.. Please help with any information or knowledge or wisdom that you think might be helpful to me because I’m desperate absolutely desperate to find something to help him and to make his quality of life better.

Thank you for any and all support

21 Replies (2 Pages)

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1
Beth Says:

Hi - A couple of questions. Was he evaluated by a neurologist and/or a neurosurgeon? Has he ever been prescribed Gabapentin for this issue?

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GmanzA1day Says:

Re: Beth (# 1) Expand Referenced Message

Gabapentin is a useless drug made up to try and stop giving opioids to patients tell the truth doc

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Beth Says:

Re: GmanzA1day (# 2) Expand Referenced Message

Ok, not a doc. I personally don’t like gabapentin, but some people find it useful. I was inquiring so as to not waste the original posters time giving useless advice.

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Lori Says:

Re: Beth (# 1) Expand Referenced Message

No he has not been seen by a neurologist he is only been seen by his primary care physician and I have been telling him that we need to get a referral to a neurologist or someone a different doctor to get a second diagnosis because I’ve researched it and restless leg syndrome does not make people scream out in pain the way he is it’s absurd it’s just crazy he is in excruciating pain all of the time and yes he never took gabapentin before now and now they’ve got him taking five pills in the morning and five pills at night on top of the the Vicodin which he is given Two 5/325 Norco a day and that’s it.. we do not know what to do

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Beth Says:

Re: Lori (# 4) Expand Referenced Message

I really think that seeing a neurologist or neurosurgeon is your best bet for getting answers. This sure sounds like nerve pain. Gabapentin helps some folks with nerve pain, but there’s no telling what’s going on without the appropriate diagnostics. I understand that he may not want to go see a specialist, but it really seems that it’s the next step, as his current treatment isn't working.

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6
Beth Says:

The other thing to consider is that as he’s a Kaiser patient, he shouldn’t need to get a referral from his PCP. You can just schedule in with a Neuro, and go from there. If your clinic says that’s impossible, I’d call their administration and find out what you need to do to get him in to a specialist.

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BlessedLady Says:

Re: Lori (# 4) Expand Referenced Message

He is prescribed Vicodin and Norco? If he has a current prescription for either or both. That explains why the emergency room did not prescribe him anything to take at home for pain.

He needs to get a second opinion about the RSL. He also needs to start seeing a pain management doctor.

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Lori Says:

Re: BlessedLady (# 7) Expand Referenced Message

Sorry he was prescribed Norco 5/325 only

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BlessedLady Says:

Re: Lori (# 8) Expand Referenced Message

He needs to see a Pain Management Doctor. The doctor will want to get a copy of his medicine records that show he has been diagnosed with a condition that might cause chronic pain and require pain management 27/7. He also needs to see a Neurologist. He should not need a referral for the Neurologist. Some Pain Management Doctors require referrals..

He was not given anything at the emergency room to take home for pain because he was already prescribed the Norco.

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Lori Says:

Re: BlessedLady (# 9) Expand Referenced Message

Yes I absolutely 110% agree with you that we definitely need to see a specialist doctor, most likely a neurologist as you recommended, to get a definite second opinion. Because I’ve done research and people are not in the screaming pain that my dad is in all of the time but it’s worse at night.. My father's life should not be ending this way and it’s killing me because I feel helpless and I don’t know what I can do to help him. It’s very very upsetting to me watching him living in this excruciating pain day after day after day night after night after night.. We have had a miserable three months now and during said three months he has had to go to the emergency room via 911 ambulance four times!! Sure they did test to make sure he didn’t have blood clots in his legs or do you know what tests and things like that but I don’t think that they have done a full evaluation on him..

Personally I’m not sure I don’t think he even has restless leg syndrome. I think it’s something different and it’s something that is obviously much more severe and debilitating especially for an 84-year-old gentleman whom has always had a very high tolerance to pain compared to the rest of the world. He’s rarely needed to take any kind of pain medicine for anything where other people would be screaming and begging for it having the same condition that he might have at the same time that they do..

Because my dad is a Kaiser patient and he’s on I think Medicare and then he pays extra for Kaiser he will need a referral and his doctor is not keeping his word in regards to what he told us. Last time we were there they did my dad needed three pills a day instead of two pills a day of the Norco 5/325 that he would give it to him. But when we asked a couple of weeks later when he was running very low on his prescription because he only gets 56 pills every 28 days which is for one pill twice a day and it is not controlling his pain at all whatsoever..

My entire life I’ve only seen my father cry three times. The first time was when his mother died. The second time was when my older sister Ayleen died at the age of 31. And lastly when my nephew died right before his 18th birthday in 2007.

In the last two months I’ve actually seen him crying crying hard because the pain was so severe he said it’s the worst pain he’s ever felt in his entire life and he doesn’t think that he can live in this type of pain for the rest of his life he said he would rather just be dead and that scares me a great deal..

Thank you for your advice and I will call and try to see about getting him referred to the neurologist thank you again for your help and wisdom and advice it is much appreciated!

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11
BlessedLady Says:

Re: Lori (# 10) Expand Referenced Message

What do you mean he has Medicare and pays extra for Kaiser ? If he has Medicare and sees a provider that accepts Medicare. He has to pay his co/pay, deductible and of course his monthly Medicare Premium. Unless he is low income and has Medicaid/MediCal and Medicare. Does he have a Medicare Advantage Plan or Traditional Medicare ? If he has a Medicare Advantage Plan he has to see providers in the plans network in order for Medicare to pay for it. If he has Traditional Medicare, He can see any provider that accepts Medicare.

If the doctor changed your father's dosage from two to three Norco a day. The doctor should have written him a prescription at that visit. Has your father talked directly to his doctor about this ? It is possible the doctor did not write it in his notes and does not remember saying it. It would be a good idea for your father to make a appointment and go in and see his doctor. He can discuss the increase in Norco then.

Your father needs to make a appointment now with a Neurologist. It would be best to wait until he gets a accurate diagnosis before he gets a appointment with a pain management doctor. If he has a Medicare Advantage Plan. They have a list of doctors that accept his plan. He needs to call his Medicare Advantage Plan. If his regular doctor will prescribe three Norco a day and that manages his pain. He probably does not need a pain management doctor.

The emergency room is not going to do a full evaluation. They have referred him back to his regular doctor for follow-up and evaluation if his doctor thinks it is appropriate.

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12
Beth Says:

Re: Lori (# 10) Expand Referenced Message

I know that at Kaiser in Denver, you don’t typically need a referral to a specialist. They may be different where you are. Also - Denver Kaiser doesn’t have pain management docs as yet. They’re apparently planning on them soon. In any case, go with your Dad to his PCP, so you can act as his advocate. Clear up the issue as to his pain meds, and insist he gets a referral, or whatever is necessary to see a neurologist. You can always appeal decisions to Kaiser administration if you don’t get what you want.

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BlessedLady Says:

Re: Beth (# 12) Expand Referenced Message

Referrals are not required with traditional Medicare. Medicare Advantage Plans usually require a referral. Some doctors that accept traditional Medicare require a referral. If the doctor says a referral is required by insurance. You need to call your father's Medicare Advantage Plan. If he does not have a Medicare Advantage Plan, the doctor is wrong. If the doctor continues to insist a referral is required. Chances are the doctor does not think his condition is serious enough to require a Neurologist or other specialist.

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Lori Says:

Re: BlessedLady (# 11) Expand Referenced Message

Yes he has Kaiser and we just found out that he doesn’t need a referral so we’re going to make an appointment with a. Neurologist too get an accurate diagnosis and then an adequate amount of the current pain medication that will work for him.. thank you all for your advice! I truly appreciate it

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Beth Says:

Re: Lori (# 14) Expand Referenced Message

That’s great! Good luck with everything. I hope your Dad gets some resolution on this.

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Lori Says:

Re: BlessedLady (# 11) Expand Referenced Message

Yes he has Kaiser and he also has whatever senior citizens have and he pays extra for Kaiser and there’s a co-pay of $100 I think when he goes to the ER I’m not sure exactly the amount I know it cost for his medication any of his medicines the most he’s charged us $20 per prescription.. he’s charge less if it’s a cheaper amount than $20.00.

His doctor is only prescribing him quantity 56 Norco 5/325 every 28 days. He added gabapentin quantity #200 milligram capsules 5 in the morning and then 5 at bedtime which equals to #2000 milligrams per day of the gabapentin. We don’t know yet exactly if it’s helping his “Supposed Diagnosis of Restless Leg Syndrome” or not. The instructions say keep increasing the dosage every 5 days until you reach a certain level of relief.. But Not to exceed 10 pills per day which is what he’s up to at this point.

Kaiser mailed him a 90 day supply of one thousand 200 milligram gabapentin capsules! Ten bottles each containing 100 pills! Neither of us have ever seen 1000 pills at the same time!!

Now that you guys have helped me understand how Kaiser works I’m going to make an appointment with a neurologist immediately and then let them run whatever and how many other different tests to be able to accurately diagnose his condition and then give him the adequate amount of pain medication so he still has some quality of life.

He did say though that he is going to leave his primary care doctor a message telling him what he’s doing and why out of respect for him..
In my opinion his doctor does not have any respect for my father whatsoever yet that’s who my dad is so that’s what we’re doing regardless of what he may or may not say about us seeking a second opinion from a capable physician that actually truly cares about the people he treats and makes the quality of their life better until they die.

My father is 84 years old and his wife should not be ending this way. It is 110% wrong. I will do literally whatever is necessary to advocate to get him the assistance that he needs to treat his conditions adequately for the rest of his life which you know truthfulness probably will not be for very much longer sadly.. He has lost his desire to live because he cannot live in this excruciating pain day after day night after night it just gets worse and worse and worse and it’s wrong that because pepper bunch of a-hole drug seekers doctors are not prescribing adequate medication for patients especially at the end of his life patients adequate amounts of narcotic pain killers to make them comfortable before they die PERIOD!! I will go and I will lobby to the United States government so we can get some laws put on the books or changed for people like my dad who is suffering horribly.. and I know there’s tens of thousands of other gentleman out there that are just like my father they are going through the same sort of thing that he’s going through and it’s just wrong.

Thanks again for all of the thoughtful comments and suggestions and they’ve truly helped me/ us make our decisions about what we can do to help him.

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BlessedLady Says:

Re: Lori (# 16) Expand Referenced Message

You need to find out exactly what insurance your father has before you try and help him with his doctors. Medicare is the heath insurance the vast majority of people 65 and older have. They have to pay a monthly premium out of their monthly social security retirement benefits. They also have to pay a yearly deductible and co/pays. For those that are low income Medicaid might be able to help with monthly Medicare expenses.

If your father has Medicare. There is no reason for him to be paying extra to see doctors at Kaiser. Unless the doctor does not accept Medicare. I am sure Kaiser accepts Medicare. I can't even imagine his deductible and co/pays equaling $100 a visit.

Doctors are use to patients getting second opinions. They are also use to patients disagreeing with them and finding another doctor. Doctors do not take these things personally. But I do understand you father feeling like he owes his doctor a explaination.

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BlessedLady Says:

Re: Lori (# 16) Expand Referenced Message

If he has a Medicare Advantage Plan. It sounds like Kaiser is out of network. He needs to either switch to Traditional Medicare so any doctor that accepts Medicare is covered. He could also look for a Medicare Advantage Plan that has Kaiser in their network.

It is important to remember Medicare Advantage Plans are private insurance companies that handle Medicare. The people you talk with in the phone or in person than handle Medicare Advantage Plans are insurance agents. They receive a commission. He might want to go see a SHIP Counselor. They have no personal interest in a person going with Traditional Medicare or with a Medicare Advantage Plan. The link below will help you find someone in your area. The service is free.

https:/­/­www.shiphelp.org/­

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Lori Says:

Re: BlessedLady (# 18) Expand Referenced Message

Thank you very much for your very useful information regarding the Heath care system for senior citizens. My parents have both been Kaiser patients (Well before mommy passed away on April 6 2020 from a long battle with Dementia and Alzheimer’s.. My father was her 24/7 caregiver and we kept mommy at home during the entire duration of her illness and she never spent even one day in a hospital or nursing home whatsoever and she died here at home with her husband of over 60 years by her side as well as myself, my older sister and my husband John whom she loved very very much. During the last 7/8 months of her life Kaiser provided “Home Hospice” services and a registered nurse would come by at first once a week and as she grew worse they’d come over 3/4 times a week and when her “Death Watch” finally began and daddy finally let them bring in a hospital bed and it only lasted less than 4 days.. it began on a Friday morning and she walked into the arms of time by Monday night at 10:52pm. They used to bring all of her medications by hand to daddy and during those final 3 1/2 days prior to her passing they brought all kinds of medications like morphine, Valium and also a myriad of different kinds of “End of life medications” which allowed her to not feel anything uncomfortable when the different bodily symptoms began to fail. She died peacefully with her most believe ones beside her comforting her letting her know that it’s okay to go.

She had “A Good Death” she wasn’t suffering at all whatsoever. Even after she passed the Kaiser home hospice nurses who’d really gotten to know my father really well still came by at first once a week and then every couple of weeks and so on for around 3/4 months to check-up on my father who was & still is deeply grieving the loss of his wife of over 60 years.

The point I’m trying to make here is that Kaiser can in fact do the right things for their patients but apparently they only do the right things is when people are on their death bed and or immediately prior to death.

My dad pays extra for Kaiser from whatever choices that are given for medical insurance senior citizens medical insurance coverage programs. With the climate of prescription drugs being abused and people becoming addicted too whatever narcotic pain pills their being prescribed for whatever their ailments they’re supposedly suffering from; had made an hysteria amongst all the physicians everywhere in the USA is why now these doctors are afraid to prescribe narcotic pain medications in fear of loosing their DEA Number /Their license to prescribe anything to anyone even antibiotics!!

My father is 84 years old.. He is suffering from excruciating debilitating pain every single day and he’s not being given the correct amount and the proper strength of the Norco 5/325. He is being given #56 pills every #28 days.. The directions are written for 1 twice a day.. That is nowhere sufficient to just help lesson the level of pain he’s experiencing.. I’ve had to give him one of my immediate release much stronger pain medications that I’m prescribed because I myself am a chronic pain patient from a motorcycle accident I had in 1989 when I was just 18 years old and it changed the entire course of the rest of my life. I have learned to just live in constant pain however 15 years ago my pain management doctor took me off of the heavy duty pain meds like Dilaudid and morphine and fentanyl demerol because I just wasn’t able to function doing normal everyday tasks because I was so sedated because of the pain meds. He switched me over to Methadone 15 years ago and it was the best thing in the world got me because now I can function like a normal person. I can drive, I can cook, I can be the “Homemaker” that a normal woman is supposed to be.. I do have a script for 10mg immediate release oxycodone for breakthrough pain but I rarely have to take even one.

I cut a pill in half & gave it to daddy to try to help him stop literally screaming and crying in a fetal position and after an hour or so I gave him the other 1/2 and he finally got the pain relief he so desperately needed.

Because I’ve been a chronic pain patient for over 30 years now I have more known about narcotic medications than I ever wanted to know and I feel that I have enough experience with all the different kinds/ types/ durations to feel safe giving him one of my pain pills. I saw how much it truly helped him and I was able to put him back into bed laying down on a normal position and he slept for nearly 6 1/2 hours without feeling the stabbing pain in his legs which makes it impossible for him to get comfortable in any positions…

I’ve messaged his primary care doctor and advised him that we’re making him an appointment with a neurologist for a second opinion and hopefully they’ll figure out exactly what’s happening/ causing this uncontrollable excruciating pain and prescribe something for his pain. At this point we don’t care if it’s a narcotic or not. We just want something, anything that will be beneficial for his quality of life and have his pain at a level that he can tolerate.. I don’t care what medication it is.. I just want this horrific mind shattering pain in his legs.

His primary care doctor has now put him in gabapentin.. they are 200mg capsules and he’s taking 5 in the morning and another 5 at bedtime.. it’s been a couple of weeks since he has begun taking them and we haven’t seen any significant changes of his pain levels decreasing yet but I researched it and it said it takes several weeks to see any significant changes in the level of his pain.. Does anyone have any useful info about this drug gabapentin that they’ve put him on? Does anyone know how long it’s supposed to take to help with the pain? I know it’s a kinda “Nerve Drug” but that’s it.

Again thank all of you for your very helpful responses; they’ve definitely helped me to find a way to try to help him.. My fathers life should not be ending like this PERIOD!!!! It’s just wrong on every single level and I feel so helpless because I don’t know how to help him; but thankfully with all of your responses I have learned allot about what to do regarding getting him into seeing the right field of medicine/ specialist..
thank you again.

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Lori Says:

Re: GmanzA1day (# 2) Expand Referenced Message

Do you truly honestly believe that doctors are prescribing gabapentin specifically because they do not want to prescribe an opiate to a patient that is in severe pain? If that is in fact true that is medical malpractice straight-up!!!

If my father dies soon and because of his condition that he can’t take his excruciating pain I will sue every single doctor and Kaiser and anybody else I can think of but it won’t really make a difference even if I win because my father will still be dead… I need my dad alive and here with me every day.. we are an extremely close family and I can’t even imagine my life without my father in it without seeing him every day spending time with him every day.

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