The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

can we talk.........about pain?

Discussion in 'Pain and Inflammation' started by PNR2008, Mar 14, 2015.

  1. PNR2008

    PNR2008 Senior Member

    Messages:
    610
    Likes:
    1,225
    OH USA
    I think if I ever wanted to leave this planet, which I don't, it would be because of pain and the exhaustion it brings.

    I am no stranger to pain, I've had migraines since 11 years old and a serious back operation with complications at 33 so when I got pain because of CFS/FM well I wasn't surprised. Also because of inadequate medical intervention for years for migraines, I'm almost sure my pain pathways are different than they should be.

    Of course at 39 years, after being diagnosed with Lupus or rheumatoid arthritis came every NSAIDS known to humans, I just got sicker and still had pain then was diagnosed with CFS/ME/FM. I also have arachnoiditis , a spider web-like tissue that surrounds the spine causing inflammation due to back complications. So enter Darvocet, which worked until it was pulled off the market and now I'm on Vicodin.

    Vicodin was great because it many times gave me energy. I could take it before going grocery shopping and get through the task. Well as one or two turned into three a day ( it took seven years) and still the pain was lurking too close for comfort, I tried Ocycodone which didn't always help with pain but made me sleepy.

    Most of my pain is in the muscles, some spine and bones and some small fiber neuropathy but the worst is located in legs especially knees and then arms. When the weather changes I am in exuciating pain for days. Light massage by me helps, pressing on trigger points to release tension in muscles and Epsom salt baths help, the third Vicodin kicks in and by 9PM I'm feeling like a person.

    My whole day is wasted. People who call me on the phone barely recognize my voice, visually others know immediately that Nancy is not right. I have spent this freezing winter in bed and got the bare minumn done which mentally is making me crazy. Now add POTS which is under control but will show it's ugly head at a moments notice.

    Oh and another tidbit, my extremely low BP goes very high when I'm in the throes of pain. What do I do? I am a person not a trembling lump in bed. Help me get some of my life back.
     
    alkt, hellytheelephant, zzz and 5 others like this.
  2. barbc56

    barbc56 Senior Member

    Messages:
    3,652
    Likes:
    5,008
    @PNR2008

    Many doctors now think that chronic pain becomes a disease in itself. I have a diagnosis of FM and chronic pain syndrome. If I understand correctly chronic pain syndrome can be caused by many health conditions and these conditions after a time cause distinct phisiological changes in the body. Someone chime in if I interpreted this incorrectly.

    I just saw a video from Stanford about chronic pain and fibromyalgia. Of course I can't find it atm but once I do I will post it as it is quite informatve. I would love to go to their pain center.

    I did contact them about the possibility of participating in some studies. I will post the url for this but tbh, my energy is dwindling, but you can find it by a Google search.

    In the meantime, take care. This is all a real bitch isn't it?

    Sorry you are going through this.

    Barb
     
  3. nandixon

    nandixon Senior Member

    Messages:
    832
    Likes:
    2,083
    Sorry for your pain!!

    When I suffered a brachial plexus arm injury several years ago it caused a very intractable, excruciating type of nerve pain that lasted for a year.

    The only thing that worked were fentanyl patches. (I no longer need them, thankfully.) I wonder if you might be able to try a low dose one (like 12 mcg/hr) and see how you respond?

    Unlike all other opioids, which make my fatigue worse (and generally make me feel ill), the fentanyl was actually energizing and I felt better ME/CFS-wise.

    I had to see a pain specialist to obtain it, but I'm not sure if that's always necessary.

    Good luck!!
     
    zzz and PNR2008 like this.
  4. Tammy

    Tammy Senior Member

    Messages:
    1,078
    Likes:
    1,408
    New Mexico
    The winter definitely makes my pain worse....especially the back pain from old back injury........it has already started to warm up where I live and the back pain is already better. I know things won't be warming up too soon in Ohio though. I also take vicodin...........and I was wondering how you take your doses? Do you start in the morning? The only other things that I have found that helps my overall pain is D-phenylalanine, magnesium malate( helps my muscle pain) and just recently I have discovered that Hyland's Ferrum phosphate is helping with the pain I get from over-exerting my muscles which doesn't take much on my part............seems to prevent the otherwise horrible strains/pains I usually get. I am not completely pain free...........but these things do help me.

    Sending warm hugs:hug:. .............I am so sorry you have to endure............it isn't easy.
     
  5. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,823
    My pain has never been severe, but it has been bad enough to cause sleep problems in the past. NSAIDs have never helped me with pretty much any type of pain, especially ME/SEID pains.

    Aside from avoiding exertion, hydroxoB12 seems to be most helpful for me in reducing pain. Sublingual helped a lot, and now with very high dose IM injections twice per week, I don't have any of the background pain. Though I still get OI-related pain (I think) if standing too long, or muscle pain if too active with those muscles.
     
    AndyPandy and nandixon like this.
  6. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,311
    Likes:
    6,962
    USA
    To me, pain is the worst symptom. I may complain with fatigue, but at least with fatigue I can sleep. Pain makes it impossible at times. I definitely have a pain complex between the fibro, sjogrens, Interstital Cystitis and having had endo which still rears it's ugly head...I live in pain.

    The weather helps...meaning, I do better in the sun.

    Nancy, I am so sorry. Fentanyl patches, like the person above mentioned do help when I am in a really bad flare. They can sometimes get me out of a flare and I sometimes feel doped on them, and sometimes not...my messed up chemistry. I can't sleep on them...that's the only problem and they are known to cause migraines. A side effect I get. BUT>>>not every time. Sometimes i put one on when I am at my wits end.

    The D-Phenylalanine, I just started and I am okay on. No response yet and I am trying intra muscular magnesium injections since I am so low in Mg.

    I know how hard this is. At some point, get to your doc and see about the Fentanyl. IF for nothing else but to STOP a flare. It does that and it calms down muscle twitching, too. I like F, but dislike it at the same time...sometimes I love it.

    Figures, my pain is not so high today, but I am tired and sick of this grey sky weather...but moving..getting out.

    You know I am in your corner on this one.

    Also, if I got a migraine from the Fentanyl, I just take off the patch, drink water and take Imitrex nasal spray....and poof, the migraine is gone!

    XX
     
    alkt, zzz, AndyPandy and 1 other person like this.
  7. Crux

    Crux Senior Member

    Messages:
    1,101
    Likes:
    768
    USA
    I'm guessing that it's D- lactic acidosis that's causing my pain. Gut dysbiosis with an overgrowth of lactic acid producing bacteria can really cause pain...anywhere. ( It travels.)

    I've been treating myself with diet, antibiotics, and herbals to reduce the bacteria. It's helped alot, but I have to be strict, and I keep finding things that cause pain...neuropathic.

    Even though the gut is better, I can still get pain from some food that feeds the bacteria. Usually it's starches, or fermented foods.

    I've read that an overgrowth of prevotella has been discovered in folks with RA. Some have been treated with antibiotics.

    I also take high dose sublingual B12. It's great for pain.

    Bicarbonates can help, taken on an empty stomach. ( I take some potassium bicarbonate.)

    Hope you can find the cause and heal it...!
     
    PNR2008 likes this.
  8. Elizabeth22

    Elizabeth22

    Messages:
    1
    Likes:
    0
    Crux, Can you say which sublingual B you take? Also you said antibiotics, did you mean probiotics?
     
  9. Crux

    Crux Senior Member

    Messages:
    1,101
    Likes:
    768
    USA
    I take Enzymatic Therapy ( B12 Infusion) Methylcobalamin in the morning, and Perque brand Hydroxocobalamin in the afternoon. Both work well for me, and I seem to only tolerate a certain amount of Methyl groups. They can be stimulating.

    I wrote and meant antibiotics in the post. In my case, guessing from some clues,bacterial overgrowth in the gut produces alot of lactic acid. Excess lactic acid has been shown to cause many neurological symptoms. It surprises me that extreme pain isn't usually included in the symptoms of lactic acidosis.

    When I eat starchy foods, probiotics,or fermented foods ; my first negative symptom will be pain, then numbness, gut dysfunction, etc. The pain has been located anywhere from hands, feet, liver, kidney, hips, neck, Head, eyes, so on. ( Migraines included. For instance, chocolate, a well known migraine inducer, has many chemicals that can be inflammatory, but one possible cause could be that it is high in fermentable fibers. Gut microbes seem to love it.)

    I'm not saying that any of these substances are bad, but, for someone with terrible pain, bacterial overgrowth is worth considering as a cause.
     
  10. ahimsa

    ahimsa Senior Member

    Messages:
    1,845
    Likes:
    4,276
    @PNR2008, and other folks who are in pain,

    I just wanted to post to add some moral support. It's just heartbreaking to hear all these stories from patients. Folks should be getting more help from doctors instead of having to reach out to other patients for ideas.

    I wish I had some suggestions but pain is not one of my biggest symptoms. I used to have bad pain from endometriosis but surgery fixed that problem. I do get migraines but they are only 1-2 times a month now and I have drugs that help with them. I get chest pains but they are not all that bad, just some background burning/stabbing feelings, not serious.

    I wish I had some concrete suggestions but I don't. So I'm sending some

    :heart: healing thoughts :heart:

    and

    :hug: cyber hugs :hug:

    to all you folks in pain. I hope that you'll find something that helps very soon.
     
    CedarHome, hellytheelephant and Tammy like this.
  11. PNR2008

    PNR2008 Senior Member

    Messages:
    610
    Likes:
    1,225
    OH USA
    Thank you @ahimsa, it's amazing what a few kind words can do when pain is coloring everything.
     
    ahimsa likes this.
  12. GONZ0hunter

    GONZ0hunter

    Messages:
    128
    Likes:
    124
    Fragelle rock, USA
    Don't give up. Find a good pain dr.
     
  13. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,916
    Likes:
    12,775
    Sth Australia
    I know this is an older post but I just read and want to say Im thinking of you PNR2008 and hope you've found something to help that pain. I used to have pain literally everywhere with this illness and often extremely severe. Severe pain is probably the worst symptom of this illness (fortunately Im not like that now and only now get occasional pain with it, my illness just changed)
     
    alkt likes this.
  14. valentinelynx

    valentinelynx Senior Member

    Messages:
    643
    Likes:
    1,402
    Tucson
    Health insurance is trying to take away my most important pain medication again. Don't blame them: it apparently costs them $25,000 a month. But, since my gut doesn't work well, orals are hit and miss and patches don't work well either (I appear to be a CYP3A4 hypermetabolizer) plus I have a mutation that makes me need higher than normal doses of opioids. Without this medication, my life may be for *$%. Sigh. Just venting. Thanks for listening.
     
    alkt and Valentijn like this.
  15. barbc56

    barbc56 Senior Member

    Messages:
    3,652
    Likes:
    5,008
    Just came across this thread again and want to bump it.

    Tramadol has worked wonders for my FM pain. But it won't do much for something like a headache. Yet Darvocet, doesn't do a thing for my FM.

    @Misfit Toy

    I had trouble with the Fentanyl patches as they kept coming off. I almost hallucinated when I was on it. There were some problems with the Fentanyl patches but I think it had to do with how people use them.. I'll look that up.

    I think it was Imitrex that helped my daughter so much with severe migraines. I rarely get headaches. When I do and they are relatively mild, plus seeing what my daughter went through, my heart goes out to anyone who gets them.

    Barb
     
    Last edited: Nov 24, 2015
    alkt likes this.
  16. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,311
    Likes:
    6,962
    USA
    @barbc56 -do you still have darvocet? They don't make it anymore.
     
  17. Crux

    Crux Senior Member

    Messages:
    1,101
    Likes:
    768
    USA
    Right now, I'm kind of feeling the pain.

    I have a cracked tooth root, and have to wait until after our Thanksgiving holiday to have an extraction. Antibiotics helped some pain, but not all.

    Glad I have some leftover hydrocodone from last year's dental torment.

    Hope y'all are finding some relief ; Pain is exhausting.

    This is strange. I didn't realize how much pain I was in until I took some hydrocodone.
     
    rosie26 and alkt like this.
  18. barbc56

    barbc56 Senior Member

    Messages:
    3,652
    Likes:
    5,008
    I think I meant oxycodon and not darvocet. I've taken it several times the last year and a half for kidney stones. It did take the edge off the pain. Unfortunately, the stones set off my FM. I was taking oxycodon and Tramadol but had to be careful and space them apart according to my urologist instructions.

    Thanks for pointing that out.

    Barb
     
    Misfit Toy and alkt like this.
  19. xrayspex

    xrayspex Senior Member

    Messages:
    975
    Likes:
    246
    u.s.a.
    I can relate around the dental woes--I have had dental related pain for the last year--more recently, in sept I had a root canal that didn't work and have been putting off the next step--another root canal or extraction because they say it could be a crack that a retreatment won't help but they cant tell because I had a crown on there before the RC....but I dread another extraction as the one I had a year ago really hurt my neck (have tricky neck) and flared that pain for months
    but failed endodontic procedure is the worst...bad pain
    problem is that pain meds cause burning neuro issues in me the next day in kidneys and feet and spine
    could be autoimmunen or detox
    like some of you the old fashioned proopoxyphene worked the best with least side effects
    kind of at a loss but got few ideas from some of these threads

     
    Last edited: Nov 29, 2015
    barbc56 likes this.
  20. barbc56

    barbc56 Senior Member

    Messages:
    3,652
    Likes:
    5,008
    I am in the process of getting a lot of dental work done. It had been several years since I had been to a dentist and was surprised that the dentist works on your teeth while you are reclining. I would also get the neck pain and this helped.

    A root canal that gave me a serious infection in the bone may have contributed to this illness along with a broken arm.

    Good luck.

    Barb
     
    xrayspex likes this.

See more popular forum discussions.

Share This Page