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Fibromyalgia and treatments

Discussion in 'Fibromyalgia' started by Misfit Toy, Jul 19, 2011.

  1. Misfit Toy

    Misfit Toy Senior Member

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    This year Fibromyalgia has been horrid for me. The worst it's ever been. I wake up in the morning from the pain. I am not ready to wake up, but I have to. My lower back feels like someone took a metal bar and decided to hit me across the lower end of my back. It's absolutely the worst pain I have ever had. I can't sleep on my side because my trigger points in my upper arms are so painful. Every trigger point feels like someone is putting a nail into me.

    After I get up, I move around, it's better and then later it's almost gone. Only to go to bed and wake up with it again. I am getting very little sleep.

    This is new to me. I can't take lyrica. It made me drugged and nuts. I was in bed constantly on it. Neurontin made me depressed and suicidal. I don't want to be taking opiates all of the time.

    Does anyone have any suggestions? I am open to all thoughts on this. This is the primary reason I will be stopping work for a bit. Because, I am far too exhausted from pain.

    I was told to get Ultram. Soma does nothing. Flexoril makes me nuts and unable to sleep. Dilaudid drugs me for hours.

    What are the options and if you told me to eat a snake, I might do it! I am exhausted from it. :In bed:
  2. xchocoholic

    xchocoholic Senior Member

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    Hi Spitfire,

    Obiously, you can't eat just any snake. But I have snakes that are specially bred for just this ... ;)

    FWIW .. my understanding of fibro is that it's body wide not just in one spot. There is a chart on line of trigger points that is used to diagnose FM. I had most of those trigger points for years ...

    Have you had a MRI ? Or testing to see what might be going on ? A kidney stone or bladder or kidney infection or ovarian cyst or disc problem, etc etc could cause pain similar to what like you're describing. Also keep in mind that pain can be refered from areas not in the area where you feel the pain.

    Case in point ... My last kidney stone was right below my kidney but the pain was much lower. It was actually to the left of my belly button ... (side note just in case ... Don't believe everything you read about kidney stones either. They're common in my family and we all have different symptoms and even that varies per kidney stone.)

    After a lot of experimenting, I narrowed down my fm pain to when I ate tomatoes or bacon. Even organic bothered me. I still have trigger points but I'm not in pain all the time anymore and I recover from exercise within a day.

    I have a disc problem and can't tolerate drugs either. An ice pack for 10 - 15 minures followed by heat for 10 - 15 mins always helps my back pain. Oh and sleeping on my side with a pillow between my legs helps too. Exercise helps too but I'm not good at doing those regularly.

    hth ... x
  3. Misfit Toy

    Misfit Toy Senior Member

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    I had an ultrasound of my kidneys and everything came back fine. I have no pain during the day, in that area. It's only when I wake up. I have all of the trigger points, every single one feels like a stake is going through it, it's just the lower back in the morning is the hardest. Actually, it's not the lower back, it's above it. Bizarre. where the kidney's are minus a kidney stone. I have a hard time sleeping on my side because the fibro points in my arms, the side of my arms absolutely kill too.

    It's so difficult to deal with. This is bringing me down right now more than the CFS.
  4. xchocoholic

    xchocoholic Senior Member

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    Hi ... I didn't realize you had other trigger points. I have lower back pain too (car accidents) and moving around loosens mine up too. A lot of people I've met have found different foods were causing their fm.

    I wanted to make sure that you looked at other possible causes. I just didn't want you to miss out if there was something else causes this pain ... not to scare you cause it could be nothing but I have a freind who just found out he has a life threatening tumor. The ER doc found it when doing a cat scan for a different problem.

    A CT or MRI would show more than an ultrasound on your kidneys. Kidney stones are typically found on a KUB xray or cat scan because they can be anywhere in the urinary tract. Not that I'm saying you have this but it's a possibility. So are the other things I mentioned.

    Hope you feel better soon ... x
  5. Misfit Toy

    Misfit Toy Senior Member

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    Thank you. I go to a doctor today and tomorrow and I am going to check into this. I agree. It's weird and I don't get it. It doesn't freak me out to know it could be something else. At this point, I would rather just know. Thanks, choco!!
  6. ukxmrv

    ukxmrv Senior Member

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    Spitfire,

    I also have trigger points flares in the morning and yes, my back feels the metal bar effect. I was lucky in that I can tolerate Lyrcia but only one 25 pill a day for only a day or two. That's enough to help me a little anyway.

    What does help is dry needling into the trigger points. The doctors sticks a needle (like accupunture) but into the start or end of a painful point. Over a month or two the good effects add up and the morning hell gets better.

    Have you tried this. Is there anything like dry needling around you?
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Maybe try tramadol, i use a slow release version which lasts about 12 hours. It helps with that stiffness in the back like when u wake in the morning and feel like an eighty year old.

    cheers!!!
  8. Misfit Toy

    Misfit Toy Senior Member

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    dry needing. I have never heard of this. I want to know about it. I went for physical therapy today but I don't think this is going to do the trick. I need a good rheumatologist, a pain specialist and someone who does trigger point injections or something where they deal with the point and massage out the pain or something. I go to the doctor tomorrow and this is a serious conversation we are going to have. He is good with cfs, but he doesn't know enough for me.
  9. Mya Symons

    Mya Symons Mya Symons

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    Hi Spitfire, I take the following for Fibromyalgia:

    Tramadol (Ultram)
    Savella--It needs to be titrated for the first month or it can cause nausea. (Although it seems like it wouldn't work because it is also used as an antidepressant, it does actually work well for the stinging radiating type pain.)
    I take Diclofenac and Misoprostol together-Diclofenac is an anti-inflammatory for the achy type pain. It can hurt the stomach when taken alone, so I take it with Misoprostol wich adds extra mucus to the stomach lining.
    I do take flexerill, however many people take Klonopin for the muscle spasms and pain and say it works well.

    The supplements I take are lots of Flinstones Children's chewable vitamins because they are easy to digest; yerba mate and organic wheat grass pills for energy (yerba mate is caffeine from a plant leaf and it is easier on the stomach then caffeine from coffee. I also drink lots of vitamin water 0 and vitamin water energy. I mix the two together half and half and take Prilosec and gas x before I drink it. It doesn't seem to bother my stomach like coffee or soda pop do.

    For my stomach problems and IBS I take Prilosec twice a day, Misoprostol, gasX and Align (Align is a probiotic). I also take Promethazine for nausea when I need it.

    For sinus problems and allergies I take 12 hour sudafed, allegra or claritin, and a nasal steroid--I can't remember the name of it right now.

    I can no longer use regular shampoo and conditioner because the preservatives bother me. I found a company called Bear Fruit Hairr that makes hair products with less preservatives. You can make your own natural hair products without fragrance. I just started trying their products and so far so good. There has been some minor itching, but nothing like before.

    I hope this helps.


    My sister-in-law who also has fibro uses acupuncture and swears by it. I don't think I could be that brave, but it might be another option for you.
  10. Misfit Toy

    Misfit Toy Senior Member

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    Thank you, Mya. I could never take caffeine. I only take it if I have a migraine, but it makes my adrenals nuts and my pain way worse. The Ultram I will try and I have to look into the other meds. You know, prilosec is not good for us. We already have low acid in our stomach and need digestive enzymes. Prilosec is good short term, but that's it. I don't create enough stomach acid...so I need bile salts.

    I cannot take any SSRI's. They make me sicker than a dog. Horrible gastritis and vomiting. They are known for stomach irritation. Wish I could take one, but another thing SSRI's do, is make me exhausted. Need that like a hole in the head.
  11. Mya Symons

    Mya Symons Mya Symons

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    Really? I Did not know this. Maybe this is why I cannot digest anything. What do you do about GERD and acid reflux? Mine is so bad and I have had it for so long I would worry about esophageal cancer without it.
  12. richvank

    richvank Senior Member

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    Hi, Mya.

    Many cases of GERD are actually due to insufficient stomach acid, rather than too much. If there isn't enough, the signal to open the pyloric sphincter (the one at the bottom of the stomach) is not sent well, so the food-acid mixture come up through the cardiac sphincter (the one leading back to the esophagus) instead. Low stomach acid is very common in ME/CFS.
    I believe it's due to low glutathione in the parietal cells of the stomach. Their mitochondria are consequently not able to make ATP at a high enough rate, so they cannot produce stomach acid at a high enough rate.

    If low stomach acid is the problem, there are several possble solutions. One is to take betaine-HCl pills with meals, using a dose just below that that causes a warm feeling in the stomach, indicating too much acid. Another is to use a dilute HCl solution, such as is supplied by Allergy Research Group. I like this one the best, because too much betaine can sidetrack the methylation cycle treatment. Another is to take lemon juice. If you do that, it's important to use a drinking straw and to flush the teeth with water afterward, because the citric acid in the lemon juice will chelate calcium and can damage the enamel on your teeth.

    You can run a simple do-it-yourself test to see if you have low stomach acid. However, if you've been taking Prilosec or one of the other drugs that lower stomach acid, you have to stop taking and wait until your stomach is back to its usual state. That isn't always a lot of fun, but it is necessary to run a good test. The test is to drink a glass of water into which you have dissolved a quarter of a teaspoon of baking soda (sodium bicarbonate) on an empty stomach, such as first thing in the morning. Then time how long it take you to burp. If you have enough stomach acid, you should burp within 2 minutes. If you haven't burped by 5 minutes, stop timing.

    Best regards,

    Rich
  13. richvank

    richvank Senior Member

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    Hi, Spitfire.

    Have you tried Low-Dose Naltrexone (LDN)? I'm seeing good reports with this from fibro patients. There's a Facebook group about this, specifically for CFS and Fibro.

    Rich
  14. Mya Symons

    Mya Symons Mya Symons

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    Thanks for the info Rich, I will try that.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    baclofen is something else that may help, its a cheap med which is a muscle relaxer and a few studies around that show it improves sleep quality which is missing in fibro, some say its the poor mans xyrem. personally i have found on its own it doesnt do alot for sleep but with other sleep meds, my sleep quality is improved, good sleep can reduce pain.

    cheers!!!
  16. Misfit Toy

    Misfit Toy Senior Member

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    Hi everyone. Rich, I could not sleep on LDN at all and became a crazy person. Couldn't do it. This was in 2008.

    I looked up Ultram and I am concerned because it's an opiate. Opiate's make me itch. I have dilaudid and I itch and can't sleep. Maybe the muscle relaxer is a better way to go. I took flexeril a couple of years ago and was a nut again. Agitated. So agitated on it. I tried it again and couldn't sleep at all. So weird. It helped me sleep before now it won't let me sleep, it wires me.

    I am miserable because I am grieving DARVOCET. Best drug for me ever. I had no ill effects from it and I could function on it and sleep great. Figures they took it off the market.

    And Rich, thank you for pointing that out to Mya. I have been thinking about that Mya. There is so much that doctor's don't know or tell and the prilosec goes to show. For years I was on Prilosec or Propulsid. I had the worst constipation and my stomach was a mess. Indigestion galore. It's exactly what Rich said. A real lemon squeezed into water with Cayenne (1 drop) really helps me to digest food and go to the bathroom! WOO HOO.

    Prilosec can totally shut down your ability to digest things if you are on it for awhile so GET OFF OF IT. I know. I was in the hospital due to GERD for a month back in 1990 and I was on Zantac. After I got out and for months my stomach was a mess. Then, I went off of it. Felt great! : )

    Fibro for me has seriously kicked up since the yeast protocol and since KEFIR. Also, since I slipped on the weekend of the 4th and caused major whiplash. I have not been the same since. It's sick how one minute you can be somewhat functional and then.....BAM. Bye bye!

    Thanks for all of the suggestions. I am writing these all down for my doc tomorrow. I need to figure this out.

    Do you know I am scared to go to bed because I am scared of how long I will sleep before I am woken up due to my back. This back thing is awful. I went for PT tonight and the woman who evaluated it said, "you need an xray." Seriously, she might be right. But why all of a sudden since January? I didn't fall then or hurt myself. It just came on and from what I was told, it is not kidney stones. The pain is awful. I literally can't breathe due to it in the morning.

    The Fentanyl patch is a 3 day patch and I don't like being on it that long.
  17. Misfit Toy

    Misfit Toy Senior Member

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    :thumbsup:Another thing Mya for acid reflux, here is a good one. Try and find "Slippery Elm Root." Buy it in bulk. It's an ancient remedy to heal the stomach. For whatever reason, it cuts stomach problems in half and it also helps me to sleep. Sometimes when I am so tired, but can't sleep I will make it and go to sleep. You heat up water, put the ELM in it and it becomes almost like a paste. The Indians used it for it's healing powers for the tummy and it restores the lining. GOOD STUFF!

    For desperate measure, I will take a benadryl pill. I have high histamine and GERD can be caused by that. Peppermint tea helps me too.

    If I am really sick to my stomach, I may pop a prilosec, but that is once in a blue moon and I do mean blue...as in twice a year.
  18. aprilk1869

    aprilk1869 Senior Member

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    When I was researching LDN I saw on one of the youtube videos Dr Gillhooly saying that he gets his patients to take it during the day so as to avoid sleep disturbance. Apparently it works just as well. They've also been trying smaller doses twice a day.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    with tramadol, you may not get a reaction to it as its synthetic and works through others means as well as opiate sites. It works through noradrenaline and serotonin, supposedly similar to some antidepressants, now in saying that i react strangely to antidepressants but no problems with tramadol, so worth a try and if it u feel worse for it, dont take it again, but worth a shot. I find it also helps with energy and mood, but if i take it too late it causes me insomnia, for some it makes them sleepy, again trial and error, nothing is simple is it.

    cheers!!!
  20. voner

    voner Senior Member

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    Spitfire:

    Here's another post where some of us have been discussing trigger points and what helps. So far the only thing anybody has posted that has helped it is either dry needling or injecting the trigger points.

    http://forums.phoenixrising.me/showthread.php?12813-What-Triggers-Your-Trigger-Point-Pain

    Dry needling is when a qualified practitioner (physical therapists, medical practitioner) takes really thin acupuncture needles and pushes them down into the trigger point, and when they get the right spot it usually causes this little explosion of pain -- very short, but pretty surprising, and then, in my experience, that trigger point area will be sore for about a day and a half -- and then the pain goes away and the trigger point has gone away. In my experience, the trigger points can (and do) come back with physical activity that uses that muscle, but, for me, breaking that cycle of pain is extremely helpful.

    I much prefer using physical therapists (or somebody like that who has a good knowledge of the neuromuscular system of the body) that are trained in dry needling, than rheumatologists. If you have insurance -- give it a try -it's covered under insurance.

    I've tried all those pharmaceutical drugs out there, and about any supplement I could ever think of more than once, and the only thing that has given an at least temporary relief of trigger point pain and its referral pain has been dry needling with some associated hands-on osteopathic type manipulations by a physical therapist or really deep massage. Not always much fun -- but after a couple days the benefits are obvious.

    When I first went to see my very capable physical therapist my neuromuscular system was a total mess. Now it's just a mess - which is an improvement. Later after I got to know my PT really well -- he told me that he had never seen a person who had a body with muscles & a spine so locked up as mine -- and my PT has been practicing for over 30 years and spent many many years as a PT in the military and is very active in his profession.

    According to the theory of pain now days -- which a lot of PT's and other pain people subscribe to -- breaking the cycle of the pain is very good. The pain cycle can bring back and forth between your neuromuscular system in up to your involuntary brain and back down and reinforce itself (anybody thinking dorsal root ganglion?? -I am).

    Breaking that pain pattern is important.

    For me -- a lot of dry needling and then associated massage/osteopathic manipulations in a session with a PT sometimes will crash me for a day or two -- but it's worth it for me. You -- you just have to give it a try see what happens.

    One other thing -- the trigger point dry needling has never done anything for, "flulike pain/ache all over pain" that is common in and me/CFS and FMS.

    I certainly empathize with you -- it sucks. I'd be very suspicious of any rheumatologists or any other practitioner who does not understand or practice some sort of trigger point therapy (dry needling/trigger point injection/etc.). It's absolutely amazing how clueless so many other rheumatologists/pain specialists are. Or maybe they're just not totally clueless -- they just don't have any effective solutions, but they are more than willing to soak up all your money.

    I hope this helped you or somebody else.

    I'm interested in hearing from the people in the other post who have had success with trigger point injections. ( I'm not real familiar with them -- but I think it involves sticking a needle into the trigger point and then injecting a little I became in there or something similar)

    enuf.

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