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Let's talk PAIN

Discussion in 'General Treatment' started by urbantravels, Oct 2, 2010.

  1. urbantravels

    urbantravels disjecta membra

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    Muscle aches, joint aches, neck pain, back pain, headaches, whatever you've got that hurts in relation to ME/CFS - what do you do about it? Prescription, non-prescription, alternative therapies? ETA: Medical marijuana?

    I'm currently at the end of my rope with my primary physician, who means well but doesn't know anything at all about pain management in ME/CFS. Attempts to get me referred to the pain clinic at my HMO have run into a brick wall: they finally told me point-blank, "We don't treat chronic fatigue syndrome." :Retro mad:

    I'm particularly interested in knowing which prescription drugs work best for people so I can hopefully have some informed conversations with either my primary or whatever doctor I wind up with (I'm currently trying to weasel my way back into the Infectious Diseases department). But all suggestions would be welcome.

    What do you take? What dosages? Do you take it regularly or "as needed"? What have you tried that DOESN'T work? I know already that over-the-counter NSAIDs don't seem to do a thing for my pain - ibuprofen, naproxen, etc.

    I have quite a bit of muscle pain; joint pain which isn't quite as bad; but worst of all is neck pain, right at the C7 verterbra and making its way from there into my shoulders and even my upper chest. I've been diligently working with a physical therapist for some time on my neck issues, but it just doesn't seem to help enough - when I'm in a bad day/flareup, my neck is going to wind up hurting a LOT no matter what I do.
     
  2. penny

    penny Senior Member

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    The things I take which I think help with my muscle pain are 5mg flexeril (muscle relaxer) & 10mg nortriptyline (tricyclic), Valerian (all three of those in the evening to help me sleep), and two aleve a day (am & pm). I still have pain, especially the kind you describe in my neck/shoulder, but if I stick to taking these and my routine of low activity then it's mild and very manageable. Probably the most important one is the muscle relaxer - it doesn't instantly take away pain but I went without for about 3 days and noticed that my sleep was worse (b/c of pain) and I had more pain during the day also.

    I also think it helps some to support my neck during the day when I'm sitting on the sofa, which may be obvious, but took me a while to think about doing it consistently! I love my bucky neck pillow for that.
     
  3. SOC

    SOC Senior Member

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    I have had joint and muscle pain, not head or neck pain, particularly. My pain threshold is very high, so I tend to think of this pain as "aches" and stiffness, but it did keep me up a night, which my PCP said qualifies as pain. :confused:

    No OTC pain reliever had a noticeable effect. My PCP was willing to prescribe Cymbalta, at least in part because it also functions as an antidepressant, lol. Made him feel like he was prescibing for something "real" instead of my imaginary ME/CFS. :rolleyes:

    The good news, though, is that the Cymbalta seems to work. It the best case, I have no aches and pains. During flares, I get some pain, but the Cymbalta takes enough of an edge off that ibuprofen usually handles the rest.

    I take 90mg Cymbalta at bedtime routinely.
    HTH
     
  4. kdeneris

    kdeneris

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    Hi, Urban Travels:

    I had FM type-pain at the beginning of my illness, which I no longer have on a daily basis. I remember being desperate about how much pain I was in, and doing some interesting things like swilling Robitussin cough medicine, or doing guanifesen therapy, to deal with the pain. Those two "therapies" did nothing for me, though.

    My FM pain issues coincided with some wide-spread reactive arthritis, with hot, red, swollen, very painful joints. After four years, the arthritis mostly resolved itself. Maybe the FM pain went away because my arthrits mostly went away. Maybe the Cymbalta I take -- 60 to 90 mg -- made the difference, although I didn't think it was helping much when I first started taking it.

    I take Nabumetone, a prescription NSAID, every night to help with the pain from my neck and back. I take Tramadol every night for the same reason. I used to take Flexeril (Cyclobenzaprine) to help me sleep, and to avoid/resolve the serious muscle spasms I sometimes have in the neck and shoulders. (These were so bad that I went to the ER once, but I don't recommend that unless you have no other options to control your pain.) I now have a really serious, heavy duty muscle relaxer to take as needed, since Flexeril no longer helps me sleep.

    I also have neck issues (C5 and C6) which I have to manage, and those issues are on-going. Posture and stretching are important. I've done physical therapy for my neck a few times in the past, too. I have a prescription for a TENS unit, but I haven't actually filled it because my neck issues have been minor just lately.

    My biggest pain issue at this time is the fact that I am having almost daily migraines. I did not start having migraines (with aura, nausea, etc.) until 2008. I've tried taking Topomax and Amitriptyline to control them, but really disliked the side-effects. My cognitive issues are quite bad enough without adding to them. So now I am taking triptans just about every day, which neither my doctor or my insurance company are happy about, considering the increased risk of stroke and substantial costs of these drugs. They aren't working as well as they used, either. I shall probably have to go back on Topomax, live with the cognitive side-effects, and hope it works better for me this time around.

    I've tried to identify all the migraine triggers, but not with much success. I can longer go to concerts, which makes me very sad.

    Kim
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i find different meds work for different pains. Tramal has helped me alot with lower back pain (severe arthritic facet joints), back pain back spasms lyrica plus helps with overall flu type pain, neurontin works for nerve type pain i get in my lower legs when trying to sleep, panadeine forte(codeine based) helps with headaches, benzos can help with overall flu type pain and with brain fog, anti-inflammatories i have found of little use but do add them to tramal for my back when i need a bit extra help. I do have a tens machine which helps when in use and a short time afterwards, and a wheat bag heated up helps lower back stiffness, then some stretches afterwards. But it would be nice to have an epidural and feel nothing from the neck down for awhile. almost forgot, every 3-4 months i get guided cortison shots into my facet joints which help alot but take about 10 days to work. phenergan is good for migraines. but once again everyone is different. a good nights sleep makes a big difference too.

    cheers!!!
     
  6. SOC

    SOC Senior Member

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    My daughter started having migraines after her ME/CFS onset. She takes Treximet, which is sumatriptan and naproxen sodium together. Supposedly it works better than the two taken together as separate pills -- don't ask me how. Treximet works wonderfully for her, but she doesn't have to take it daily, so the side effects are not such an issue.

    If you haven't tried it already, maybe it would be a way to take a lower dose of sumtriptan and still get some relief.

    Insurance companies don't like to pay for it because it is expensive, but if you've tried other migraine meds, particularly something like Imitrex, without success, most insurance companies give in if your doctor insists. :Retro smile:
     
  7. kdeneris

    kdeneris

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    Thanks for sharing your daughter's experience with me, Sickofcfs. I will bring it up when I have a doctor appointment next week. I hope I don't have to go to a pain clinic, especially because the waiting list will be year long anyway.

    I don't think a lower dose of sumitriptan would work for me, because I've been taking maximum doses to get incomplete relief :{{{{ I started with Sumitriptan, moved on to Relpax, moved on to Frova...and none of them seem to work as well after awhile. Sometimes I wonder if the triptans cause "rebound" headaches, but I'm not sure. I tried just taking nothing a few weeks back, and ended up having a migraine for an additional three days, which only ended when I took some more triptans.

    Mostly I think I am heading into the land of permanent migraine because a mean retrovirus is eating my brain.

    If you don't mind me asking, did your daughter get migraines immediately after onset of ME/CFS, or did it take a few years for them to develop, Sickofcfs?
     
  8. urbantravels

    urbantravels disjecta membra

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    I edited my original post to add the question - Medical marijuana? (It's legal in my state, and ubiquitous in my city, but there are a lot of dicey things about the "dispensaries." I have never been a drug user but am willing to keep my options open - only, I despair of ever finding actual knowledgeable medical advice about it with regard to ME/CFS.)

    I hadn't heard of the tender points for fibromyalgia being changed, can you elaborate, themoonisblue? I was seen by a rheumatologist, early on in my illness before I was diagnosed with CFS. At that time, she didn't feel I met the criteria for FM based on not having the specific FM tender points. But at that time, in the first 3-4 months of my illness I didn't have nearly so many issues with physical pain apart from generalized flu-like myalgias...so I've wondered, if I were to be checked again, if I would meet the criteria for FM.

    As for medications, I'm already on a few that allegedly might help with pain, all I can say is they're not helping *enough.* I'm on Effexor, but a low dose (75 mg.) Trazodone and alprazolam (Xanax) for sleep. I do seem to feel somewhat better in the window while the sleep drugs are kicking in and before I actually go to sleep. However, taking Xanax all the time doesn't seem like an ideal long-term solution.

    Tramadol interests me but I'm never clear on whether it's really a controlled substance or whether it induces dependence.
     
  9. SOC

    SOC Senior Member

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    I really feel for you, Kim! I see how awful my daughter feels when she has migraines; I can't imagine what it's like to feel like that every day. :(

    My daughter's migraines started several years after onset, but she was mostly in remission during that time. I think they started after the chicken pox booster that pushed her into the flare from which she never recovered. Certainly the mean retrovirus eating her brain theory might work for her, too. ;)
     
  10. Mya Symons

    Mya Symons Mya Symons

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    Tramadol, Dicloflonec (I take these with misoprostol to protect the stomach since anti-inflamatories interfere with the bodies ability to make stomach mucus. Misoprostol adds mucus to the stomach and really helps to keep my stomach from hurting and bloating. I also take beano, gas X, and prilosec often during the day. These also help with the stomach pain, acid reflux and bloating). I use flexeril at night (a muscle relaxer) for the muscle twitching, so I can get some sleep. Flexeril also helps with the muscle pain. For people with fibromyalgia, I take Savella and it seems to somewhat work for the stinging- radiating pain. Evidentily, when your body is low on norepinephrine it can cause pain. Savella is a seritonin and nor-epenephrine reuptake inhibitor. (I am not sure, however, if it actually helps with my pain or if it keeps me from getting depression due to being fatigued and in pain; therefore, making me feel better.

    I also find that Co-Enzyme Q helps with muscle pain. Walking helps me with the pain as long as I walk slowly and don't over do it. (On some days I am so fatigued I can't walk around. I do understand that some people with CFS have days like this everyday). Sometimes doing some stretching after I walk helps also.

    I have heard many people say that a tanquilizer (trazadone) used at night helps reduce the muscle pain and twitching. I can't take it though because I sleep walk when I take sleeping pills or tranquillizers.

    Further, I have to use promethizine (anti nausea med) often for the nausea. Sometimes the nausea is do to pills and sometimes it is because I can't tolerate the heat in the summer. I would recommend that anyone who has CFS or Fibromyalgia to carry promethizine with them.

    As I understand is often the case with CFS and/or Fibromyalgia, non of these medicines work completely. However, they do take away some of the pain. I think after sometime a person can get used to the pain, but never the debilitating fatigue.

    WARNING: If you are not severely low on seritonin, this combination of medicines I take will give you seritonin disease. It is a potentially fatal disease. My doctor tells me that usually, however, people with fibromyalgia have very low levels of seritonin and norepenephrine (almost non existent). I am not sure if this applies to persons with CFS who do not have FMS. I have been taking these medicines for over 5 years and have had no problems; however, every time I switch pharmacies I end up in an argument with the pharmacist who doesn't want to prescribe this combination of meds. Usually, my doctor has to call in and talk to the pharmacist and explain it to him or her.

    P.S. Tramadol is an opiate that is suppossed to be non addictive. Doctors are much much more likely to prescribe it; even doctors who don't know much about pain management and are not willing to prescribe you anything else. I have taken Tramadol for several years now and it does not seem to be addictive. Some people say it is despite what most doctors say. I used oxycodone for several years and I would sweat and actually crave the oxycodone. That has never happened to me with Tramadol. I will never take oxycodone again.
     
  11. kdeneris

    kdeneris

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    Thanks, sickofcfs. I hope your daughter's migraines don't progress. My migraines didn't start until I had been sick for several years. I also think vaccines (Influenza, followed by MMR) played a role in the progress of my illness. Now my daughter's school wants me to get her vaccinated for Hep A (our family stopped vaccinating after my second bad vaccine reaction) and I haven't decided what to do about it. I could file for exemption if I decide not to do it.
     
  12. curry

    curry Senior Member

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    I have a constantly stiff, aching neck which leads to migraine, and my lower legs feel partially numb.

    What helped significantly:

    - Magnesium sulphate injections, approx. 500mg, daily
    - Magnesium oil spray on the affected area, daily
    - B12 methylb
    - coQ12, 2x 200mg, daily

    What also helped:

    - Accupuncture, though as it was very costly I stopped. It is also not really a cure, but great temporary relief.


    I would stay away from long-term use of pain killers, as with time they can cause further pain. (As I was told by a GP.)

    I have mentioned this in another post before, but will keep posting, as it might help someone.

    There is a German doctor, Dr Bodo Kulinski, whose theory is that CFS is caused by trauma to the vertebrae, which leads to 'nitrosative stress' which will damage the endocrinesystem, mitochondria, etc. and ends in chronique fatigue. He has treated various CFS patients and healed them by aligning the cervical spine and treating the mitochondria, endocrinesystem etc.


    http://www.dr-kuklinski.info/buecher/buecher.html (Website is in German)
     
  13. kdeneris

    kdeneris

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    I haven't noticed that Tramadol induces dependence. I've gone off it entirely without ill effects, other than the uncontrolled pain. I step up the dose when I'm in worse pain, and step it back down when I improve. The most interesting thing I've ever heard about Tramadol was when some character in the film "Waltzing with Bashir" says that Tramadol is the party drug of choice for Palestinians on the West Bank. I have a hard time getting my mind around the idea of Tramadol as a party drug :)

    I have never met tender pont criteria.

    Most, or possibly all of the marijuana research is politically motivated at this point. You should probably read it anyway, if you are thinking of heading to a dispensary.

    If people vote yes on Proposition 19, maybe there will be some decent research, and the dispensaries won't be so dicey.

    I'm taking Trazodone for sleep. Sometimes it works, sometimes not.

    Xanax is a scary drug, especially taken on a regular basis. I have taken it, but I understand it is very habit-forming.
     
  14. Mya Symons

    Mya Symons Mya Symons

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    My son takes imitrex for the migraines. I think that it contains one of the medicines you described. It seems to work somewhat, but I think I am going to ask his doctor for something new that might work better. Maybe the combo your daughter takes will work better. Did she ever try Imitrex and found it did not work as well?
     
  15. SOC

    SOC Senior Member

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    I think vaccines are good, as a general rule. I'd much rather have a very mild rxn than get the real thing. Our only problem with the chicken pox booster is that injecting a live herpes virus into a person who probably already has uncontrolled or poorly controlled herpes virus infections without checking the current status of her immunity to chicken pox is stupid. Our best guess at this point is that the live chicken pox booster probably reactivated HHV-6, because she does now have an active HHV-6 infection. Herpes viruses are known to activate each other, so a well-informed doctor should have thought twice (at least) about giving a live herpes virus to someone who probably already had poorly controlled herpes virus infections.

    We've also avoided the HPV (Guardasil) vaccine because it's a live virus vaccine, it's relatively new, she has an active HHV-6 infection (not a good time for vaccines), and she has no risk for HPV at the moment.

    We still do all killed virus vaccines. Last year we didn't get flu shots in time because our PCP didn't consider us high risk. :rolleyes: Not surprisingly, my daughter caught H1N1 on campus (probably) and brought it home to me (I hadn't been out of the house in weeks). I was in bed most of the fall and nearly bedbound most of the winter. This year Dr Lerner gave us flu shots as soon as he had them.

    My personal opinion is that it's far riskier to chance getting full-blown virus infections than it is to take killed virus vaccines. Live virus vaccines, as I was told, are harder on your immune system and may not be appropriate for some PWCs.

    So while I'm unhappy that the doctor gave my daughter the chicken pox booster, I don't blame the vaccine. I blame the doctor for not having the common sense to check whether she had sufficient immunity to chicken pox before giving the booster.... and for not believing ME/CFS is real and therefore dismissing the possibility that her occasional "mono-like symptoms" were reactivations of EBV and HHV-6.
     
  16. kdeneris

    kdeneris

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    I had a 'flu vaccine in 2003 that activated shingles -- probably involved live, attenuated Influenza virus. The Rubella component of MMR is made from live, attenuated virus. But I did get a Tetanus vaccine this year with no ill-effects, and so we are doing all killed vaccines now, too. I just hadn't researched the Hep A vaccine.

    No Gardasil for us.
     
  17. SOC

    SOC Senior Member

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    My PCP started with me with Effexor, which didn't really help, but switched me to Cymbalta, which did. He had me switch them one-for-one immediately, as I recall. No wean off one onto the other -- just 90mg Effexor one day and 90mg Cymbalta the next.

    Dr Lapp put me on Tylenol PM to induce sleep and trazodone to maintain sleep. Works beautifully for me. He said both are fine to stay on long-term for PWCs. Safer than taking Xanax every night.

    So, for me, 90mg Cymbalta, Tylenol PM, and trazodone at bedtime make big improvements to my sleep and pain issues with relatively small concerns about long-term difficulties.
     
  18. SOC

    SOC Senior Member

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    I think she started with Treximet, because the insurance company just started asking why we didn't try something else first, so I guess we didn't, lol! I'll have to check the records.
     
  19. meadowlark

    meadowlark Senior Member

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    The slow onset of my ME/CFS began in the early 80s with daily migraines that stopped like a light switch whenever I had a fever. When the fever stopped, the migraine returned--like a light switch again. This was a hemiplegic migraine. It went down the left side of my body, as though a spike went through my skull, eye, left arm, left pelvis, left leg and left foot. (Yes, I limped.) I had these migraines about 320 days of the year for at least 20 years, and though I tried the usual list--tricyclics, imitrex, seizure meds, marijuana, many more---none were any help. (I tried more than 40 different meds.) At the same time I had so many stomach ulcers that my diet became restricted virtually to baby food. (To complicate matters, I'm allergic to tylenol.) With all in this play, I found that fiorinal with codeine was by far the most effective. It does include aspirin, which is hard on the stomach, but it has a limited amount, and my stomach doctor prefers it for me, as he thinks it less likely than other meds to make my ulcers bleed. Because of the barbituate in fiorinal, I regularly went off it for a while to prove I wasn't having the notorious "rebound" headache, though rebound headaches are for migraines with a conventional etiology.

    Weirdly, I went to work for twenty years with those migraines.

    My CFS diagnosis was in 2001. Since then, fibromyalgia, orthostatic intolerance, vertigo, and sky-high glandular fever have kept me either housebound or (for the past year) 90% bedbound. The fever, of course, has ended the migraine, but I find my pain just as miserable. All of us have very high tolerance for pain, of course. But the fever--as high as 102/103 for weeks on end--is just about to break me. I use cold cloths and ice on my forehead and wrists, of course, but I can get delirious, which is scarey because I live alone. As we all know, it is very hard to get friends to visit or help with errands, and to add to the problem, my closest friend (closest in miles) lives 90 minutes away. So I'm in sort of a wind tunnel here.

    Unfortunately, I can rarely afford to take the only drug that briefly breaks the fever--once again, the dreaded fiorinal. I live on government disability--and the disability plan doesn't cover fiorinal or imitrex (which, for some reason, has suddenly started to work for the now-rare migraine). I have to choose between eating and buying my prescriptions. I also can't afford transportation to the doctor, as the cab to the doctor costs the same as four days' groceries. I have tried different charities, asking for help to get to the doctor, and have found one social agency that will help with the cost. That will help a little, financially--on the blessed day that the van they promise to send around doesn't forget to come. So far, that hasn't happened.

    I honestly don't know what to do. I would be glad to hear recommendations. Though government disability won't pay for much, I'm particularly interested in what people do for unrelenting fever.
     
  20. August59

    August59 Daughters High School Graduation

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    Does Fiorcet work for you as well. It seems that it is fairly cheap and plentiful in the states. I think I have seen it for about $40 for a qty. of 60.
     

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