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Long but GREAT info for those w/ fibro, chronic pain & nerve pain

Mar 30, 2016 5:35 PM

I just started using this app about 20 minutes ago.

I started reading through the forums and I noticed some topics I may be able to help with, mainly fibro "all over my muscles ache like I have the flu", chronic lower back pain, nerve damage and inflammation, the last of which is the key to everything, I've found.

I was diagnosed with fibro in August 2012. My main symptoms are the achy muscles I mentioned above, fatigue with the inability to stay asleep, troubles concentrating, memory problems, increased sensitivity to pain & thus injuries hurt much more than I expect, ibs, depression & anxiety and maybe others that I can't think of right now.

In January of 2013 my lower back began to hurt. It was minor pain at first. Within a few months it went from a constant 3-4 on the pain scale to a constant 6. I've had so many diagnostic tests done to determine the cause of my lower back pain that I cannot remember how many there has been. Three years later and still no true reason. I have slight arthritis and a mild bulging of the L4-L5 disc. That's it. Last August I had a nerve ablation (burning of the pain receptors) in my L3 to L5 area to try and relieve some pain. The process took a total of 6 weeks and did not work at all. During one of the 4 procedures for the ablation the doctor hit my sciatic nerve and it is now damaged and causes me so much pain that I can hardly move around 45-50% of the time. I am getting more testing done soon to continue my seemingly endless quest to figure out why the heck my back hurts. I also have muscle spasms in my lower back that increased tenfold with the damaged sciatic nerve.

So that is what I have. This is what I do to help the pain and concentration issues.

For the pain I have been taking ibuprofen 800mg 3x daily, MS Contin (extended release morphine) 3x daily(most people it lasts 12 hrs but with me only 7-8 hours), Percocet, 4-5x daily depending on how bad the pain is. Mexelitine (a heart arithmetic medication that somehow also works the same as a lidocaine infusion) 3x daily. I have been taking the first three since my pain began with a foot surgery gone awry in October 2011 (the foot is the least of my problems now). MS Contin is for long term pain control & Percocet is for "breakthrough" pain control. The reason I take both is because by always taking action to keep pain from getting out of control is the best way to manage chronic pain. This means that you should never wait until you can't stand the pain and then take a pain medication. When you do that you will need a lot more of whatever you use for pain control to get the flare up, out of control pain under control and tolerable. Unfortunately, I can't really do that anymore since even at extremely high doses of MS Contin, it hardly helps anymore due to increased tolerance. (I'm trying to get into a new pain clinic to have it switched to something else) I also take some vitamins and supplements which I will get to soon.

In January & February, my nerve pain was never truly under control. I couldn't figure out why. There was also several hard knotted muscles in the area that hurt worse. So now the vitamin and supplements part. I have been taking ginger root & bromelain (an enzyme found in the center of pineapples) every night for the past 2-3 years. Both are natural anti inflammatories with no side effects. When the nerve pain wouldn't get better for so long I did some minor research on nerve pain and natural remedies. Inflammation is the main reason nerve pain hurts so much. Therefore I increased my ginger and bromelain. I went from 1 of each at night to 2-3 twice a day. I also added turmeric pills, another natural anti inflammatory, vitamin D3 and a vitamin B complex (sublingual, a liquid put under your tongue). Then, since my insurance doesn't cover them, I used a lidocaine ointment & gauze & made a "patch" and put it on the worst spot. Within 2 days the nerve pain was completely under control and even felt better than it had since it happened.

During my research I also found several reputable sources about studies stating that the amino acid, L-Carnitine along with alpha lipoic acid actually regenerates damaged nerves. It takes a while to notice a real difference, I believe it said 6+ months. I ordered some and am on week 3 of that.

I also take cheated magnesium supplements which help with that all over muscle pain. And a muscle relaxer that doesn't work very well, in my opinion. But the other 2 I tried either make me super sleepy or I'm allergic. I also take cymbalta, which is helping with the nerve pain and the all over pain. 60mg daily is the optimal dose for that. Studies show that any more just doesn't make much of a difference.

I think that is everything for the pain part. For concentration I take adderal. It works well for me. There are several other ADD medications that may work if adderal doesn't. These medications are kind of like anti depressants in the way that some work for some people and not for others and you may have to try a couple before you find what works.

If anyone took the time to read my novella and has any questions, don't hesitate. Also, I can give whomever my email address as well if you'd like any more info or links.

Mar 30, 2016 8:29 PM

Welcome sd7272! Thank you for sharing your story. You have similar methods I use, except I am allergic to most pain meds. I'm on multi vitamins, D, B's, and magnesium. Oh and calcium. I use Voltaren gel, Tylenol Arthritis, and my rx meds. I've found that the vitamins do help, and I've been low on D, B's, and calcium for years. I also have a gene defect where I don't absorb and metabolize B9-folate. Hugs & prayers! 🙂💕🙏🌼

Mar 30, 2016 9:47 PM

sd7272, you are very welcome to our wonderful supportive, encouraging, supportive group of pain warriors. You described excellently, your disease processes and the treatment plan you follow. We have a lot in common, with the exception of fibromyalgia. My nerve pain is r/t spinal disease etc. Most of my pain management is holistic, and I use everything from ice packs, TENS UNITS, rice socks, OTC MEDS, and when my pain wall /limit has reached the absolute top when I can not bear it, I will take prescribed Percocets, but only for a limited time. I encourage everyone to use narcotics as sparingly as possible....for manyany reasons. Narcotics are very necessary, yet increased physical dependence and thus increase dosage and quantities can actually accentuate perceptions of pain..(it is a brain thing) I encourage my PEEPS here on CMP , TO do and follow what's best for the chronic pain they live with. I am a retired ICU/CCU Nurse , I miss being able to provide patient care very deeply. I am still grieving over my life altering chronic spinal disease processes and pain.
I am so happy when we have newcomers open up and share. It helps us all feel less alone /isolated, thus reducing anxiety and that ever sneaking state of depression. Thank you for your honesty. Believe me , we do have a lot of fun here as well. Love and Blessings, Terri

Mar 30, 2016 9:58 PM

P.S. you will meet some absolutely loving people here who are as pro-active as you are !!!! Keep in touch!

Mar 30, 2016 10:32 PM

Welcome. I've just joined myself. 😊

Mar 31, 2016 9:17 AM

Lol, in my foggy brain I forgot the TENS unit and rice socks I use too!

Apr 04, 2016 3:59 AM

I've been trying to find a new pain clinic. It's hard because I'm limited due to having state poor people insurance and not a lot of clinics take it. Not only that but many are either specifically hell bent on prescribing narcotics or being solely holistic. I want one that does both but also does procedures like epidural injections and the like. I went to one the other day because someone had told me this doctor did medications and procedures. The only the he did was 25% of an emg test (he stopped bc he claimed I was excessively bleeding from the needle poke part, it was 3 tiny little dots of blood, he just didn't want to do his job) and then a script for pt. I asked him what kind of pt he felt I would benefit from the best and he actually told me he didn't know and to ask the therapist!! He also didn't prescribe narcotics, nerve pain medication or muscle relaxers. I really don't know what this poor excuse for a doctor actually does.

I found 3 pain clinics in my area that look promising via their websites. Im going to call them after I get some sleep and they open. (Since it's 5am or something here) I know one for sure takes my insurance. But it's also the one that is furthest away, 30-45 minute drive. I guess we'll see.

Apr 04, 2016 5:11 AM

sd7272,
Thank you for your story.
Your symptoms are much like mine, except I have degenrative arthritis in my spine also.
You mention alot of things I am not familiar with for help. So far all I have been taking is hydrocodone, gabipenten, and tramadol for the pain. I have been on the same doses of these now for 3 years and now they seem not to work at all.
The doc now wants to send me to a pain clinic for injections in the back.

I have heard bad things about those injections. Anyone had them and are they worth getting.
I have had not much back pain for a couple years and now the last 6 mo. it has returned like I am on no meds at all.
Not sure whats going on.

Just had an mri last week, showed L5 inflamed and pressing on nerve that gives me my pain in right hip and pain.
I did not know sleep disorder was linked to fibro. I have trouble falling asleep, then wake up every hour most nights.
Most of the time I wake form pain in arms, elbow, hip, etc.
Fatigued all the time from the constant pain, worry about work/finances, and probably not enough good sleep.

I have just started the process for disability because I can not seem to get to work on a regular basis anymore.
I work 10 hour days as a machinist on concrete floors, by the end of 2 days, I am done for a couple days.
Just totally wore out.

I also have chronic bronchitus and eposidic asthama. The welding smoke, cutting fluids, paint fumes and solvent mist in machine shops just brings on attacks.
I dont know what to do anymore but apply for disability and try to take care of my health.

Are you on disability? May I ask how old you are?
Again, thanks for your story, I'll be copying your meds and natural remidies you mention and looking into them.
Sorry for my spelling,
Hang in there, and I hope you remain a part of this community.

Apr 05, 2016 10:46 AM

I kept getting back spasms. I found that in and around my hip joint there were "microspasms", teeny pains very deep. I began working the pains with a "knobble" massage tool, just pressing and holding until the pain eased, then a tiny motion to the next pain. That helped quite a bit for the constant pain. But then I had some major recurring muscle spasms. I found that stretching my iliopsoas muscle made those pains stop entirely. I prop one ankle over the other knee, and then slowly let my knee fall to that side, stretching all along the side of my butt and hip on the other side. Feels so good!
But of course now my back pain is DDD, and I'm scheduled for an XLIF in a month.
I am severely allergic to bromelain, but turmeric and b12 are my friends!

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