Venting

My intent is not to be negative but provide an outlet for us all who experience some days that are worse than others and to share our life's experience with having AMN because no one understands better than us. What these online communities have given me is solace in knowing that there are others who understand what I'm experiencing and that I am also not alone. When I am having an intolerable experience, I think of all of you, too, knowing that others share my frustration with the symptoms of AMN.

I'm beginning this post because I had a crucial evening of pain and spasms that were competing against each other. As a result, I took more gabapentin and baclofen than ever before some resemblance of relief occurred. Note: I consumed less than the maximum dose. The outcome, however, affected me greatly the next day.

After I woke and finished stretching in bed (there are ample leg exercises one can do in bed before rising), as soon as I attempted to stand, I fell. Twice. The effects of my drug cocktail were still with me and my gait (or lack of) was alarmingly frightful and it persisted throughout the day. I had excessive dragging and foot drop. Fatigue was a partner because I was unable to sleep in. The only other time I experienced this kind of ordeal was during my last move.

As I'm writing this, the burning neuropathy (with fire and fury) is revisiting and I hope not to repeat last night's performance. Update: It did.

Thanks for reading and feel free to share your experiences.

Steve

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  • Steve,

    I can identify with everything you write. There are days when this disease is absolute misery. "Burning neuropathy with fire and fury" - yes, that pretty well describes my foot pain about one or two days each week. Gabapentin thus far has done nothing for me. None of the many "pain-relieving" medications that people with AMN take do anything to remove the cause of the pain; they simply mask it. We need better treatments for neuropathic pain.

    I am sorry to hear that you are currently experiencing a greater than normal amount of pain. All I can really say is, I hear you. Keep fighting, and try to make each day count. Have compassion for yourself, and just do as best as you can on each given day. These may sound like platitudes, but they've gotten me through some of my worst days.

    Aaron

  • I heartily agree. My day's pacing is slower but I am accommodating the change.. I learned not to be critical and know "it is what it is". What's baffling me is that my neuropathy heats up more in the evening. During the day, it is an inconvenience but manageable. But at night, let the games begin! I'm waiting for a cannabis compound that is easy to administer without going through the medicinal pot pipeline. But then again, I may not wait.

  • Steve, I hope you are getting relief by the time you read this. I am experiencing mild neuropathic pain, so not like yours at all. However, I definitely understand the part about getting out of bed every morning! I am also looking into cannabis in one form or another. I had my very first experience 2 weeks ago with a piece of candy and I was blown away by how effectively it removed my spasms and I felt I could walk properly again! Unfortunately, I don't have any more to continue but I am working on it!

    Have you already tried it? Please do let me know if you post here about your experience!

    Be well,

    Julie

  • Hi Julie,

    Thank you for your concern. (Last night was better but I've had incontinence for the last 3 nights which was concerning.) Sitting behind the computer In the evening, the neuropathy really starts to heat up. But some relief is found when I move to a recliner. I'm hoping this is temporary. I shall soon see.

    Did the cannabis candy get you high? I wonder if it would help with the neuropathy and foot spasms , so I will not have to take both baclofen and gabapentin.

  • Interestingly, no, it did not get me high. I got terribly sleepy within 2 hours of taking a bite. I had to go to sleep as soon as I could, so as to avoid falling sleep where I stood! Like I said, the next day or so was amazing. I wasn't high but I was much more focused. I wish I could repeat this. I expect to get more next week. I would think it would at least help with foot spasms. It certainly doesn't hurt to try.

  • A long while ago, a friend who was prescribed medicinal marijuana, gave me a brownie with cannabis. It hit me like a truck. Recently, I've learned that you are not supposed to consume the whole thing! (It was a big brownie.)

  • Hah! I've never tried brownies, but I have been witness to a friend who ate 2 (smaller) pieces. It was not medicinal. It hit her suddenly and she threw up! Yes, I am going to play with portion sizes when I get my hands on some again.

    By the way, does it help if you get up from your computer from time to time? I find that the spasticity gets too strong a hold on me if I'm idle - standing or sitting. This includes spasticity of the bladder and bowel.

  • You're right about body positioning. Once I get up from the computer and return, however, the pain repeats. It is after winding down and preparing for sleep, that's when pain is most prominent.

  • I recently was able to get my medical marijuana licence. I am in Canada. I use the CBD (canibinol) oil from a licensed dispensary. It does not get one high, as there are minimal amounts of THC. I must say, that boy does it help. I was taking ridiculous amounts of ibprophen daily - I'm very fortunate that my stomach and kidneys are ok - I have now only used them 3 times in 3 weeks!

    You may find greater results with a 1:1 ratio of CBD and THC.

    ...Something to try for sure.

  • Do you use the tincture? How much do you use?

    I find ibuprofen only helps sometimes so I don't use it.

  • I think I posted this elsewhere but I will post it here, too. You have to check for fluid retention in your legs.

    The calf muscles are a key pumping mechanism to get fluid back up the leg. For those of us with reduced mobility, we don't use that mechanism and fluid collects in our lower extremities. A diet with a high amount of sodium makes it worse.

    The fluid can be unnoticeable but still cause pain. It is a burning and pinprick sensation. Because it is similar to the neuropathy pain, it is lumped together. The pain sensation goes away when you walk because the movement increases your heart rate and pumps the fluid back up.

    It took me a while to get a doctor who helped identify this.

    I had increased pain after midday.

    The pain was worse if I had a fast food burger and fries for lunch with a Super Sized soda.

    Sitting for hours in front of the computer screen makes it worse.

    Pain is relieved by elevating the legs.

    Walking improved the pain

    Measurements of my feet, ankle, and calves resulted in larger sizes in the evening than in the morning.

    If this is similar for you, you might have fluid retention issues that Gabapentin or Backofen can not deal with.

    Here is what they did for me.

    Compression socks-help with fluid retention but actually I find something pressing against my leg feels good. There are many levels, start low

    Diuretics-I take 10mg of Torsemide.

    Exercise-I had to find ways to keep my calves moving and strong.

    Elevation-I sleep with my legs elevated. I bought a piano bench I use while working at my desk to prop up my legs up while I work

    Salt-I cut back from what had to 4000-5000 mg a day to 1,500 most days.

    It has helped a lot and most days so can reduce my Gabapentin and Baclofen.

    But pot might might be good, too. :)

  • Thanks Mariagno. This is something to consider as I sometimes find relief when legs are elevated as opposed to a sitting position or when I am mobile. Do you also experience the burning pain in your feet?

    As for sodium intake, do you have Addison's? Because of ample hydration and salt cravings (even with fludrocortisone), I was never concerned about my intake. My lab tests always showed Na levels at minimum.

  • I have not tested positive for Addison's but am due again.

    The burning is in my calves all the way down to the top of my feet. Like I said it was always worse after lunch, especially high sodium meals. A 32-ounce soda also put a lot of fluid in me.

    My sodium never tested high because the diuretic flushes it out but even slight amounts of fluid retention in the soft tissue can create burning and pinpricks

    I started with elevating my feet, compression socks, and exercise but I still needed a diuretic but it sure is different once we figured things out.

  • Fluid retention.

    I have "flabby" ankles. I'll second the compression stockings, sock, knee-length, full leg is need's be.

    Get proper medical-grade. I use Scholl.

    Helps spasticity as well, for me.

    Used to love the wacky baccy as a youth. The only stuff I'd take now is dope I've grown myself. All that synthetic dope going round England right now. Never know what's in street drugs.

    I sit lotus posture on any chair. If my legs dangle on a kitchen chair, I can only last a maximum of five minutes.

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