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Living with Polyneuropathy CIDP, GBS, & CMT

Over the counter relief?


#1

I am recently diagnoised with CIDP by my spine specialist. I have to wait until the 14th of January to see the Neurologist, The spine specialist didn't change any medications, my GP hasn't suggested anything; they are all waiting for the Neurology appointment. The pain is so severe; especially when walking. Is there ANYTHING I can do over the counter, herbal, food wise to help until I see the Neurologist? I have increased my Fish Oil intake, trying to consume more cinnamon, ginger and honey. Any suggestions would be appreciated.

Merry Christmas.


#2

I have heard that Capaisin (a cream derived from a pepper plant) acts like Gabapentin in scrambling the nerve endings that are transmitting pain. I tried it for the icy coldness that I had and it worked to some degree. The thing is, it must be started in low doses and a tolerance for it built up over about 2-3 weeks.


#3

Your GP should start you on some Gabapentin before you other appt. or give you some pain pills to help you cope. I took some lorazepam 1/2 mg to help with the anxiety and it interferred with the pain pathways giving me about 50-60% relief. I tried the OTC stuff but was disappointed and poorer.
Hang in there. I also wait 4 my neuro appt on Jan 6 so I know how you are feeling. Your Holiday greeting says that you are golding it together. Good for you! Merry Christmas and a much much better New Year.


#4

Nerve pain seems to be fundamentally different from other kinds of pain, and does not respond to the same treatments. Ordinary over-the-counter stuff (Advil, Naproxen) does very little for me. Neurontin (generic: gabapentin) is often prescribed for nerve pain. It works really well for me, but makes me sleepy, and it is prescription, not over the counter. But it seems to be pretty safe, and your family doctor should be willing and able to prescribe it before you can see your neurologist.


#5

Thank you so much. I will discuss options with my gp.


#6

Exactly what type of pain are you experiencing? Burning, stabbing, aching, pins and needles, etc? I tried everything OTC imaginable but didn't find any relief. The best combination that I found was from Rx meds called Lyrica, Vicodin, & Diazepam...which are all 3 controlled substances, but maybe your GP would give you a short term supply until your neuro comes up with a more permanent plan for you. Perhaps your GP would be able to get you in to be seen by a pain management specialist in the meantime to try to bring you some relief. Hang in there!


#7

Sunshine I have been having stabbing pain. I have pins and needles and that waking from numbness feeling but it isn't near as bad as the stabbing pain. I talked with my GP today and she ordered 1-3 pills of 100 mg Neurontin to get me through to seeing the Neurologist. I took 2 pills so far but was able to talk my 2 beagles for a walk. It was a short one but we did go and I made it home! Thank you for your support :-)


#8

I took the same essential meds as Sunshine and found great relief alternating Tylenol with the Codeine preparations while taking the --azeapams to break the cycle of anxiety/pain. I still cannot do withour my Gabapentin 400mg tid. You will make it through this barrier to evntual diagnosis and RELIEF. Try to stay “calm” and focused. Keep th faith.



Anne said:

Sunshine I have been having stabbing pain. I have pins and needles and that waking from numbness feeling but it isn’t near as bad as the stabbing pain. I talked with my GP today and she ordered 1-3 pills of 100 mg Neurontin to get me through to seeing the Neurologist. I took 2 pills so far but was able to talk my 2 beagles for a walk. It was a short one but we did go and I made it home! Thank you for your support :slight_smile:


#9

RE: OTC's

Ask BOTH your pahrmicist and MD's about GABA, Devils Claw and Taurine...after you research..keep in mind we only spend about 1/2 % if aour medical budget on food and OTC reseach so , of course, most docs will say "not enough research" we have to change this! From chronic meds to cures...


#10

Thank you Loni. I have started Gabapentin and it helps as long as I don't over do it. I will have to look into Devils Claw and Taurine. I am still taking the Meloxicam and using Tylenol in between the Gabapentin.


#11

Lyrica is a cleaner analog of Gabapentin which seems to work better for some. It is costly however.

Some may qualify for discounts: The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines by matching them with the right assistance programs. Many will get their medications free or nearly free. https://www.pparx.org/ *We didn’t qualify- but some may.

A few of my physician friends are trying diets off: http://www.macrobiotics.co.uk/foodlist.htm



#12

Has anyone out there given Immunocal a serious try. It's an immuno-enhancing OTC preparation with quite a medical pedigree having appearances in the PDR and Pharmacists Redbook. A Canadian friend swears by it!


#13

Not tired however I am a big beleiver in glutathione.

Perhap a less pricier and high delivery rate would be Troy's DIY on YouTube via NaturalHerbalFarmacy.


#14

ALA (Alpha Lipoic Acid) I get mine on line. It costs much less then buying it from the drug store. An elderly gentleman who had been dx with cidp for years, recommended it to me. He told me it would take about 2 months to start feeling the affects. It has been a miracle drug for me. I was on a much higher dose of Neurontin than was even recommended. I am now down to 300-600mg per day. I have been using the ALA regularly now for about 3 years.


#15

ALA SOUNDS VERY PROMISING. ANY SIDE EFFECTS OR DRUG INTERACTIONS?
I’m also looking into Immunocal, a glutathion enhancer.


#16





#17

It sure helped me. I am also looking into the glutathion. My friend used to sell a product with this in it. It sounds worth checking out.

Geepster said:

ALA SOUNDS VERY PROMISING. ANY SIDE EFFECTS OR DRUG INTERACTIONS?
I'm also looking into Immunocal, a glutathion enhancer.

#18

I have not used ALA but do try to take 3 Omega 3 fatty acid fish pills a day. I once had a physician tell me that helps with inflammation and joints, and it makes my cardiologist happy.
The Immunocal looks very promising as well Geepster but the cost! :-O Wonder if the pills work as well as the powders?


#19

If I understand correctly, the " powder pouches" last one month at $86/box. Lyrica, Gabapentin, and Horizant can cost more than that depending on the dose and frquency. My friend absolutely swears by it but that is not science. Science;however, isn’t rushing to do double blind studies with Immunocal and patients like us GBS/CIDP patients! Trial and error is all we have now and also people like those on LWCIDP that share their experiences. BTW i’m sold on Omega 3 FA too. Thanks.


Anne said:

I have not used ALA but do try to take 3 Omega 3 fatty acid fish pills a day. I once had a physician tell me that helps with inflammation and joints, and it makes my cardiologist happy.
The Immunocal looks very promising as well Geepster but the cost! :open_mouth: Wonder if the pills work as well as the powders?


#20

As a warning for men, by consuming more Omega 3, you are increasing your chances of prostrate cancer. Most studies indicate by 20%. I felt the need to say something because my husband took 3 Omega’s a day and now has prostrate cancer.