Viewing 15 posts - 1 through 15 (of 16 total)
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  • #300046
    Michele
    Participant

    Are Muscle spasms / twitching muscles /muscle pain part of this disease picture as much as joints?

    How do folks with the muscle pain / spasms / and neuoropathy find ways to cope with it? Relieve it?

    I've really plummeted this last week and am majorly discouraged. The pain is overwhelming in many areas of my body. Celebrex and vicodin are the pain meds I'm currently on as Trammadol works for 2-3 days and that's it. My doc gave me a prescription for Percocet but I the potential addiction to Vicodin is scary enough.

    Some of you who've seen my posts know I've tried a lot of things like acupuncture, epsom salt baths, lyrica.

    Would the muscle spasms occur from Vicodin itself or the disease?

    My mental toughness is close to gone.

    Help!

    Michele

    #310938
    linda
    Participant

    Hi Michele,

    I've been where you are and I'm so sorry you're having it so rough right now. I wish I could tell you what's causing the pain, but there are just too many variables- plus I'm not a doctor. I can tell you a few things it could be, if that helps. It could be FMS, especially if the muscle pain is located in the trigger points associated w/ that dx. It could be RA, the muscles can be affected by inflamed joints to which they are connected. These next 2 you may not want to know; either you're becoming tolerant to the vicodin and/or you are physically dependent on it and when your body thinks it needs more vicodin it mimics the original pain. There are many other things that could be causing your pain.

    I know we've discussed the failure of acupuncture before, but I do think it might be worth it at this point to try another acupuncturist, what have you got to lose (well, besides your $$$). This may sound like an extreme option, but have you considered checking into a physical rehab center for pain management? (Not to be confused with a drug rehab center or a spa) If your insurance won't cover all of the expenses there are foundations that can help. The one I use is at needymeds.com.

    I wish I could wave a magic wand and make it go away. I've never heard of FMS being this painful and resistant to pain meds. It couldn't hurt to go to another pain specialist for a second opinion. It doesn't mean you have to stop seeing the doctor you have now. I'm sorry I can't be of more help, I know I'm just repeating info I've already given to you. 🙁

    linda
    P.S. After reading Mazs' post I think she's probably on to something. At any rate trying magnesium is much less drastic and less expensive than acupuncture or a rehab center, so I would try that first. And magnesium deficiency seems to fit with your symptoms of muscle pain and spasm. I'm crossing my fingers that this is the answer!

    #310939
    Maz
    Keymaster

    [user=50]Michele[/user] wrote:

    Are Muscle spasms / twitching muscles /muscle pain part of this disease picture as much as joints?

    How do folks with the muscle pain / spasms / and neuoropathy find ways to cope with it? Relieve it?

     

    Hi Michele,

    A few years ago, I went through a period of constant muscle twitching (technically called fasiculations). There was really no explanation for it, as I was on no medication at the time for anything and perfectly healthy. Pretty much any part of my body was affected at various times with no rhyme or reason.

    It bothered me a bit, though painless, so I went online and did some searching and found that a magnesium deficiency can be the cause. So I started supplementing with Natural Calm, which is a powdered, tasteless substance you can mix with a glass of water (they sell it in flavors now). You take two or three servings a day, but if your stools become loose, then you know to reduce your dose.

    Magnesium is a muscle relaxer and calcium has the opposite affect…a muscle contractor. Normally it's important to keep a 2:1 (calcium/magnesium) balance in the body and, if one takes calcium, it's important to also take magnesium to ensure it is properly absorbed in the body. To take calcium without magnesium, one risks calcifications in the kidneys or liver and gall bladder (as stones), a build up in the arteries, increased blood pressure, etc.

    Okay, so this is probably much more than you wanted to know…but taking a magnesium supplement like Natural Calm may help. Although, there is no telling what may be causing these twitches. Mine disappeared on their own after about half a year. They can be a part of some disease process, e.g. Lyme Disease of FM, or a side-effect of a drug, a hormone imbalance, or a simple dietary deficiency. I also think that many of us with these diseases get a buildup of neurotoxins throughout our bodies over time and this can manifest in all kinds of weird ways, so trying out a few detox methods may also help.  

    Others may have some good suggestions for you. A Friend is away for the week, but she has posted on the effects of magnesium in a more informed way in the past and may be able to offer some further insight when she's back.

    So sorry to hear you're still in this rough period. :crying: You're in my thoughts, Michele.

    Peace, Maz

     

    #310940
    DragonSlayer
    Participant

    Hi, Michelle:

    In AS we have severe muscle spasms and some muscle pain, also.  Most of this is neurological as a direct and local reaction to inflammation, but some is due to mineral  and electrolyte depletion caused by the disease process.

    I found much relief from spending a lot of time in a very hot sauna, and alternating hot and cold–in water, especially, but getting out of inflammation is most important.

    Also, supplementation with minerals (especially magnesium and the citrate solution is not very expensive; taken by the tablespoonful instead of the whole bottle as instructed prior to 'procedures.'), and electrolytes (as much as I hate the 'flavor' Gatoraid works for this).

    Hang in there, you will find the relief you need and deserve,
    John

    #310941
    Michele
    Participant

    Linda,

    I am quite concerned about the addiction part. My attempt to stem this was to take vicodin for a few weeks than switch to Trammadol then back, so the body wasn't just getting one of them. Was that a bad idea? My doc did not give an opinion on it. He prescribed percocet when I called Sat. morning, but I just am too afraid to add another narcotic.

    The muscle jumping started getting very aggressive on the day I moved from Trammadol (taken about one week) to Vicodin. So I can't pinpoint disease from withdrawal symptoms to the reintroduction of a different medicine.

    Taking more vicodin makes me nauseous. I take a total of 3 vicodin / day now. Split up to 1/2 pill every 3 hours while I'm awake. Up from 2 vicodin with the overwhelming pain. It really doesn't help, but I think I'm holding myself so tight I never get a chance to let the poor muscles relax. Is there a way to tell if this is addiction? Some doctors say vicodin is fine for people with chronic pain because once the pain levels lower, less is needed and people can stop without trouble when pain resolves. The part about the body needing more certainly has me concerned.

    I just checked our yellow pages and the options for accupuncture are all with chiropractors which my mom swears isn't the same. How do you know when the accupuncturist is good? Obviously, pain relief would be the first indicator, but is there a prescreening? I don't have a local “word of mouth” network on this to get recommendations.

    While I type this, I'm drinking Maz's suggestion of Natural Calm.

    How are you doing Linda? Has your stomach calmed down?? I wondered if it was connected to the infusion itself? I hope you are doing better!!!!!

    Michele

    #310942
    Fran
    Participant

    Michele-  At one point I was doing Magnesium also when things were really bad.  I thought it was helpful.  Just thought I'd add that cuz I see Maz has already suggested it.

    #310943
    linda
    Participant

    Michele,

    It's really difficult to know what's causing the pain, it's probably a comb. of things. I can tell you that I did not attempt to lower the dosage of the vicodin until I had started seeing improvement in the pain- trying anything before that will just set you up for failure. My advice is to get the pain down to a more manageable level with other methods supplementing the vicodin. I don't think you're dependent on vicodin yet, you would not be able to just stop taking it like you've been doing without getting nauseated, headaches, etc from w/drawel symptoms. I think it's best to stop worrying about that aspect of it since there is nothing you can do about it right now and it's just creating more stress. I know that's probably the last thing you'd expect me to say with all of my opinions on dependency, but the fact is that you can't beat a pain med dependency w/out first addressing the pain.

    Unfortunately, there is a wide variety of acupuncturists at various levels of competency. My experience was with a D.O., I just felt more comfortable with someone who had a medical background and offered more than just acupuncture. If you could find a pain specialist who is a D.O. and uses acupuncture, I feel like that would be your best option. I do think it's going to take more than acupuncture, which is why a pain specialist would be the best. A good acupuncturist will evaluate each session to see how well it worked and then make adjustments in the placement of the needles until he gets the right comb. I'm not a big fan of chiropractors; some people swear by them, I've been to a few and never had any results. I got lucky with my doc as I just opened the phone book and chose him at random. I don't know if you're a religious person, but I did say a quick prayer for guidance before I opened the phone book, like you, I didn't have the resources or energy to shop around.

    As for the depression, it can definitely cause pain and needs to treated like any other symptom. I have a friend who has had good results with Cymbalta. I take an antidepressant before I go to bed to help with sleep. See what the magnesium does, I'm not sure how long it usually takes to work since I don't use it. And finally, yes I do believe that people like us get better with AP, it's just a tougher road for some of us than others. I look at the alternative, which is taking more dangerous drugs for the rest of my life, and I know I've got to try and stick with it.

    linda

    #310944
    Michele
    Participant

    Thanks, John!

    Boy, that quest to get out of inflammation!

    Thanks for your encouragement!

    Michele

    #310945
    Michele
    Participant

    Thanks Fran, John, Linda and Maz!!!!

    My mom had sent me some Natural Calm and I was scared to try it…but your encouragement led me to it. I'll continue it! It is a nice flavor and I like it!

    I had a massage therapist also come in to my home after posting earlier and he did a lymphatic massage and gently stretched the overtaxed muscles. He said the muscles are just locked tight. My knee cap wouldn't even move when he checked because of the ultra-spasm. His take was that since I flared and couldn't move around as much that lactic acid is building up and causing the extreme burning sensation. Makes sense because each day I couldn't get around well, the burning got worse.

    He said that when I was walking, if I over did it, the muscles would just spasm further. That's a bummer because how to get out of this pain cycle just isn't clear. No movement creates more toxic build up…movement creates more spasm.

    This detox stuff is just so non-stop and from every angle. The toxin build up makes sense to me. And the burning muscles are cause they are locked up. So, how to keep unlocking them. Boy, keep the suggestions coming! I'm listening!!!

    Michele

    #310946
    Kim
    Participant

    Sorry I have nothing constructive to offer other than to say, I'm sorry you're feeling so lousy.  Was your massage recently?  I've heard they can release a boatload of toxins in your body all at once and we should be cautious. 

    There has got to be that magic formula that will work for you and I hope you find it soon……kim

    #310947
    Sierra
    Participant

    I love the product CALM! The orange flavor is nice.

    Sierra

    #310948
    Michele
    Participant

    Hey Kim and Sierra,

    My mom bought me raspberry flavor and it was a real pleasant surprise! Glad to know you also like the orange!

    Kim your point about the massage is well taken. This is perhaps not the best word for it. Basically the therapist holds a section of muscle very very gently and helps the muscle stretch and then gently moves it back and forth to help it unspasm and lengthen. It is very different from the deep tissue massages I used to so enjoy. This is a lot more like physical therapy. He will take the leg and bend it. If anything is uncomfortable he stops and feedback to him is a large part of how he knows what to do. Then he does a very gentle lymphatic massage, which at points I could tell that was part of where the burning sensation was coming from. But I can't really explain it well…

    What is totally a blessing is that it is very very reasonable. It is less than a c0-pay to a doctor for 2 hours of gentle muscle work and he comes to me! Wow! This guy is really special. He's also a specific type of organic farmer. I could go on further, but I am grateful!!!

    Michele

    #310949
    Michele
    Participant

    Linda!!

    I am nauseated with a dull headache that I normally don't have!!! Ugh. You are right about having to get the pain down and treat the disease first. I don't have any alternatives right now.

    I'll be thinking of you during your upcoming tests and hope you find some resolution.

    Michele

    #310950
    Pip
    Participant

    I had spasms and neuropathy that went away with AP.  It's a slow road but worth it.  Have you tried the whole lemon/olive oil drink?  That worked wonders for me and I added the lecithin to reverse the neuropathy.  It worked.

    Hugs,

    Pip

    #310951
    Michele
    Participant

    Hi,

    Pain management saga update:

    I just wanted to let you all know that the pain management doctor who had prescribed lyrica for me was going to go to an older medicine next. My PCP went that direction on my request and prescribed (Elavil) amitriptyline. I've taken it three nights and do finally have some relief. There is still a scary bit of neuorpathic pain but at a much lower level. The rib cage pain is calmed down. I am so relieved and pray that this medicine will be something to help me in the long term. I don't really know how it works for pain as it is also an antidepressant, but I was getting very depressed and desperate by the run-away herx and disease anyway, so getting help with that, too is welcome. One of the lists of things it treats is rheumatoid arthritis pain. It sure wasn't mentioned by any general doctor or rheumatologist to me, so I want to pass this along to those coping with terrible pain and needing another direction to consider.

    I stopped the low dose minocin pulse when the pain was runaway. How long should I wait before returning to minocin? It is so nice to finally have a break from the enormous amount of pain I was in. I pray it lasts!

    Michele

Viewing 15 posts - 1 through 15 (of 16 total)

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