Help with rls and nerve damage issues and ferrin levels/ferrin serium levels are they one in the same. Advice on opioids. All advice welcome

[ESRDRLS]

I hate to bother everyone on this but I have no where else to go. I have read more relate to info in the last month then all the research I have gathered in years. My problem now. I am I dialysis and was kinda banking on the ferrin levels. My first question is I requested my blood work was was honestly disappointed cause my levels were listed at above 362. Is a ferrin blood test also the same as ferrin serrium levels or are they one in the same. I do have regular iron injected directly into my machine which on dialysis. I had a bleeding problem awhile back where I literally was put in the hospital for bleeding out and had to have a transfusion. The bleeding is not nearly as bad but still happens on a lower scale. I am wondering if I have the correct ferrin reading or should I pursue it further. Like is there a different test for ferrin as opposed to ferrin serium levels?

I also submitted a question about lyrica. I have severe nerve damage from a tetherd spinal cord. It seems like my nerve pain and rls have kicked into overdrive when on lyrica and I wanted to know if this is happened with anyone else.

My pain dr after having me on meds for 15 years has now succumb to the national optiod scare. I was on norco 2 every 6 hours for breakthru pain and OxyContin 40 mg twice a day with alprazalam 1mg twice a day for anxiety. She started with almost a year ago when I went in for a checkup asking me to pick which pain med I would no longer take cause she did not wasn’t to write for two pain meds on top of my alprazalam. I chose to drop the norco Now she has dropped my OxyContin down to 30 mg twinge per day and will no longer write my alprazalam. I am getting the alprazalam now from my gp and my pain dr has sent a letter but way of me that he sign showing he is aware of the OxyContin since he has chosen to give me my anxiety meds. Now that I have been on the lower OxyContin my pain and rls has kicked into overdrive. I am not sleeping more than 15 min at a shot. I go up to 5 days without sleep. I can’t even sleep in dialysis.

I found some old 20 mg OxyContin night before last and out of desperation I added a 20 mg to my 30 mg at bedtime. I did not do this lightly and am very aware of not wanting to take too much. I have now done this for two nights and it has been two nights I have slept. I woke up with some nerve pain this morning but in comparison I feel like I want to live again. Even my family have noticed a difference in me for the better. I am scared to death went I go in for my checkup and my dr finds out the 20 I added that she will simply fire me. I have to tell her cause I have like 42 20’s left. I am so scared. I don’t have the uphoric feelings with this meds. It simply cuts my nerve pain where I can sleep and function the next day. Any advice on this would be appreciated. Thank y’all in advance for any help and advice.

[Madlegs1]

You have covered a lot of issues in this post. I can only address what I have experience of.

Firstly- Serum ferritin. If you have had transfusions, then a ferritin reading of 360 would be expected and not extraordinary. Also, if you are getting iron transfusions, that would add iron to the blood system. Ferritin levels up to 1000 ,given such reasons, would not be cause for alarm.

Secondly-- rls is part of withdrawal from opiates, quite normal, and not related to generic rls. You need to have a very clear idea of where you are going with your medications. In consultation with your doctors, and pharmacist.

If you need opiates for pain control, short term, then so be it. However, there are better pain relief systems that are easier on your body.

Thirdly--Antidepressants can be potent triggers for rls-- so you need to check that out. Google " 'medication' and rls" and you'll get an idea of peoples experiences.

I hope this gives you some help.

Others will come in with more comments.

Cheers.

[involuntarydancer]

I second everything madlegs has said and would add:

Lyrica is used to treat rls and although it’s not always successful it would be unusual for it to worsen rls. Maybe your symptoms worsened for some other reason as a coincidence while you were on Lyrica? For instance they would definitely worsen notwithstanding being on lyrica if you were reducing an opioid dose at the same time.

I can totally relate to the reasons you took the extra oxy. Lack of sleep is pure torture. However, it does sound like you are taking a very large dose of opioids in general. As I understand it, this can be a feature when using opioids to treat pain - in that more and more is required. It may be that the advice to reduce opioids is not incorrect in these circumstances.

I wonder if in the unusual circumstances of your case it would be worth taking a small dose of dopamine agonist while you are going through the reduction phase of the opioids. It would be very important to ensure your serum ferritin remained high and that you maintained a really low dose while on such a drug but it might help to get you through the opioid withdrawal (during which time your rls is likely to worsen appreciably if untreated).

Ultimately it might be that Lyrica would work better for you than it did previously (depending on the reasons it didn’t work originally) and I wouldn’t rule out trying it again as it can be good for rls and also nerve pain. Lryca can take a matter of a few weeks to start working. It can also require a good bit of tweaking of dose and timing to get the maximum benefit.

So far as your serum ferritin is concerned, it doesn’t sound as though you can do more than you are doing at the moment.

Mad legs has posted good links to drug withdrawal websites in the past which might be worth checking out. Good luck. You are certainly going through tough times at the moment but hopefully you will end up with a workable regime.

I wonder, given your complicated situation, if it would be worth emailing Dr Buchfuhrer for some advice. He is a world expert on rls and answers emails from sufferers around the world. If you go to his website rlshelp.org you can see the answers he has given other sufferers over the years.

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You have my sympathy with your multiple issues. I hope you manage to get your medication sorted out. If you were taking opiates on a regular basis and not abusing them (i.e. only taking what's prescribed) then I don't see that it was necessary to cut them and apparently without considering withdrawal effects.

This has put you in a position where you are taking more than prescribed. It seems the doctors who contributed to the opioid "crisis " by irresponsibly prescribing opiates are now contributing to it by irresponsibly cutting prescriptions.

It does sound as if your RLS is at least partly secondary to the medication changes.

The role of alprazolam in this is another complication. I imagine like other benzodiazepines, it ceases to be effective after a while, but, as it's NOT an antidepressant it shouldn't make your RLS worse. Stopping it will have withdrawal consequences.

There are non-pharmacological therapies for both chronic pain and anxiety which you might explore which can be complementary to medications.

You'll probably hate this suggestion, but psychological approaches are commonly use in chronic pain clinics in the UK which are effective. Any good pain doctor should be aware of them.

I have also found acupuncture helpful with nerve pain.

There are also effective psychological therapies for anxiety

Good luck.

[tupper]

I think we are all in the dark as far as our meds go; it seems that what works for one of us, is not by any means good for the rest of us. one medication for RLS is not suitable for someone else. Trial and error, until you find what works for you, even then the drug can at a letter date start to lose its efficacy. In my case when RLS presented it self to me after several years with P.D, it presented it self in my legs only. It was not a pleasent sensation, but manageable, I would take 3/4 capsules of gabapentin. BUT OVER the years it has become a nightmare, it can take hold any where in my body, it now generally starts across my shoulder- blades, into my arms, wrists, legs, it can start even in my sleep, with me apparently crying out loud. I wake and start walking, walking, arms flailing. I had been taking pramipexol for a very short time to some relief, then suddenly my system could not tolerate it as it suddenly presented with a great deal of dizziness and unsteadiness. One sensation lasted 14 hrs, then it settled in my bones, shoulders, elbows, wrists, hips, knees, ankles, all in excruciating pain ; all told it lasted for 40 hours approx. This was was by far the very very worst event . Luckily I had a 7am appointment with my Neurologist on the Monday morning. I am now taking Ropinirole 2x2 a day, 25mg. for the last two weeks , and for now it seems to be working. BUT I have learnt that the moment RLS shows its self, to be aware, take medication, and start to walk. I wear a ' fit_bit ' I can put on an amazing amount of steps! That one night I put on just over 5000 steps in our apartment walking!. For my PD I take the drug Azilect, 1mg once a day, this has been a remarkable drug for me, holding most of my symptoms at bay.There I have been very blessed. Also my husband of 45 years is a true partner in this undertaking. I send all of you fellow suffers my warmest wishes for some relief, and easier days ahead.