Struggling with Returning Persistent Neuropathi... - AMN EASIER

AMN EASIER

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Struggling with Returning Persistent Neuropathic Pain and Spasms.

SongStream profile image

Last month, I met a specialist in physical medicine to address my unrelenting neuropathic pain and spasms as baclofen was no longer responding. I was prescribed Tizanidine (4mg) for spasms which initially did quiet my feet jerking at night. (I will note here that I am also being treated for insomnia while taking 30 m.g. of Temazepam which has now been unresponsive- I once doubled my dose to 60 mg which my doctor adamantly said was not okay.

For the past few days my spasms have returned and have not been suppressed by Tizanidine as I have taken up to 12 mg. Pain is now uncontrolled with Gabapentin.. (I had been staggering my dosage in the evening beginning at 6 pm and taking on average 1500 m.g. )

Where I am now is that my specialist will check in with my neurologist as to what could be causing these spams and hopefully recommend other treatments. But the pain, too, is unbearable and I am miserable in the evening.

So, for those who suffer with intense burning pain as well as feet jerking, please provide advice on your successful treatment so that I may share with my doctors. I do note pain and sometimes feet jerks during the day but they are not as bothersome than when I am retiring in the evening. These symptoms sometimes cause me to be short tempered and irritable which does not characterize me at all. I am in dire need of relief!

Thanks for reading and I look forward to your responses.

Steve

23 Replies

Give high dose of magnesium a try.

Thanks bluejadedwho. Currently, I've been taking 2 tablets of Source Naturals Magnesium Malate which I just learned is one tablet less per serving of 425 m.g. (magnesium as magnesium malate). I believe that 2500 mg might be safe while also noting that 420 m.g. is the RDA for men. Great, I took an additional 3 capsules and read online about a laxative effect. I will be checking in with my neuro as well. Online searches reveal this supplement may be beneficial for those with CFS, fibromyalgia, RLS and sleep disturbances. Hmmmm. This is timely advice. Again, thank you.

Keep in mind that the RDA is a standard that just illustrates the bare minimum to prevent deficiency. The therapeutic dosage of magnesium is far greater. Yes, the only real concern you would have is diarrhea.

And to what StevenSims says, I also agree that high dose vitamin d along with the magnesium is a potentially beneficial less chemical, natural approach. I understand (and don’t get me wrong, I use pharmaceuticals too as sometimes they are necessary) that we are often in a state of desperation and want relief. Keep in mind, and I strongly believes this, this condition results in free radical damage. Pharamaceuticals are chemicals. I can’t help but think that this may detrimentally affect us on the same level in some way.

All the best and be well.

I firmly agree that free radical damage is prevalent with our condition and that treatment with antioxidants is beneficial. I am beleaguered by the use of pharmaceuticals prescribed by physicians whose only aim is to treat symptoms with drugs. But, yes, I, too, have become reliant as I have found relief but a new outlook is necessary. Thanks for your reply.

I'm am so sorry that you are suffering, Steve. We're in the same boat, unfortunately. The list of things I've tried to alleviate some of the neuropathic pain is long and growing - amitriptyline, duloxetine, gabapentin, baclofen, carbamazepine, cannabis, Penetrex, Lyrica, capsaicin cream, topical baclofen/amitriptyline/ketamine, red light therapy, infrared therapy. None have done anything to significantly reduce the pain.

Percocet (oxycodone) works, but I have only taken it very rarely, as I have concerns about developing tolerance to it. It's a poor solution. Lately I've just been suffering through the pain. The unavoidable depression associated with this comes and goes. I'm tired of living with this pain. I am truly sorry that you are experiencing this, as well. I am also very sorry that I don't have a solution for you. Private message me on this forum if you need to talk or vent, buddy.

Holy Moly, Aaron! I had no idea you tried every unthinkable avenue to alleviate your pain!

Thank you for listing your attempts for alleviation as I've only tried gabapentin and venlafaxine.

I'm so sorry you had to endure all of these trials without success while STILL suffering.

You are my main pain connection, because as I told my physical medicine specialist, neuropathic pain is most common with female carriers.

I certainly will be in contact with you via private messaging. Thank you for chiming in, too.

I am eager yo year responses as my husband is in the same boat and is so despondent living in this much pain. He has recently started on duloxetine

SongStream profile image
SongStream in reply to Vanliz

Thank you. I don't feel lonely with this matter when I know there are others in the same boat. And yes, despondency is a consequence that I have to address with daily affirmations and gratefulness which have been helpful but only to some extent.

Hi, the only thing that works for me is vitamin D3 it's worth giving it a try? I take 5000iu

All the best

Steve, great advice. This is on my list now. Thank you.

I also use a Actipatch tucked in my sock when my pain is really bad, defiantly works for me

Do you find the Actipatch helps?

Now on my list. Thanks.

Well worth a try? I buy the muscle and joint pain patch and tuck it in my sock!

All the best

Ps I hope you can get it in the us

monkeybus profile image
monkeybus in reply to StevenSims

Actipatch, see my latest post:

healthunlocked.com/amneasie...

Yep it defo helps!

Hi Steve

Sorry to hear you in in such pain. I take a bunch of supplements and had been taking Magnesium but found the diuretic side effects untenable (up every 30 minutes some nights). I stopped it recently and now get a couple of hours before I have to get up to relieve myself. Your specialist and neurologist might not agree but I have amazing success with pain relief using DMSO (Dimethyl Sulfoxide). I use a pure pharmaceutical grade topically. You have to be careful using DMSO as it absorbs throught the skin and into the blood stream and is a carrier - so nothing toxic on hands or skin when you apply it is essential. It works for me and pain relief is quick. It does make your breath smell garlicky but a small price to pay. Easilly available online and not expensive.

Good luck.

Michael

Thanks Michael!

Hi Steve,

Just wondering if you've had any relief from the Actipatch or vitamin d? I hope you are well?

All the best

Aaron98 profile image
Aaron98 in reply to StevenSims

Hi Steve,

I'd be interested to hear this, too. I'm going in to see a new pain management specialist in Seattle tomorrow, but I have no idea what to ask for. You know I've tried so many different medications...I'm just weary of this pain. If I have time in the morning I may try to give you a call to discuss whether the Actipatch has worked for you.

I hope you are well.

I've been MIA from these boards...sorry for the delay. I haven't tried Actipatch yet and just contacted them to ensure device can be used for "diabetic" neuropathy since site only listed muscle and joint pain. An engineer responded by saying to place center of the loop where pain occurs; only for nighttime use and not for walking. Also there is a 7 day free trial where one pays for shipping only. Please note this link is for USA customers only. I requested 2 devices fort only $10:

store.tryactipatch.com/prod...

Thank you all for your comments and best wishes. I am glad to report that my pain is now mostly managed by taking 1500 mg of Gabapentin and 3 doses of Venlafaxine ER (37.5mg), which I had taken before this nightmarish episode. All three of my doctors suspected that Venlafaxine was the missing equation. I had recently discontinued taking it as I was concerned about the withdrawal symptoms. (I had experienced this once when my medication was lost in the mail.) I still have bouts of pain but this nighttime regimen has provided much relief as it seems to somewhat mask the pain

I forgot to include that someone on another AMN community board suggested carbidopa levodopa for spasms and it worked! I now have much needed bedtime relief.

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