Let's talk PAIN

[voner]

Urbantravels:

Finally, here's a subject I know something about. Pain.

The question is where do I start? Pain has so many textures, and "frequencies", etc. --- the details matter.

First thing I would suggest looking up the concept of "pain centralization". This is the concept that chronic pain is at least partially caused by the rewiring of your central nervous system/brain. Various techniques, including "mirror therapy" have helped people who have "phantom limb pain" and some people with Reflex Sympathetic Dystrophy.... the Australians are leading the way in this area. Check out the NOIGROUP, or Lorimer Mosely Lorimer is a great guy -- he's got a great sense of humor but he is brilliant also. He doesn't mind - in fact, he always thinks out of the box. I've always been struck by how empathetic to patients and forward thinking and the leading physical therapy researchers are, while most NIH/CDC researchers want to stay as far as away from the patient says they can.

I also would suggest checking out the EULAR fibromyalgia treatment guidelines:

www.enfa-europe.eu/assets/downloads/eular.pdf

these are evidence-based drug treatments for fibromyalgia type pain which is what you're neck symptoms to sound like.

I have tried tens of types of therapies and drugs and the very few things I've found that helped me in any significant manner were:

Flu-like pain: opioids can kick it back -- but they have their problems. It is been found recently that glia cells in the nervous system are irritated by opioids. The research is starting to show that these glia cells are intimately involved in the pain process.. I took methadone for a long time- it helped me get of the flu-like pain wall. It did not help one bit with any of the nerve type -- "neck, shoulders, upper back" pain. I don't take methadone anymore -- and I'm not so sure nowadays I would recommend it for anybody The SNRIs help many people with flu-like pain -- as somebody else mentioned it's the norepinephrine, etc.. Once again, check out the EULAR fibromyalgia treatment guidelines

Muscle trigger point/injury pain: here the only thing I've found to help is a very educated physical therapist. I have tried many many massage therapists, chiropractors, and physical therapists -- and only once I found a skilled physical therapist who had a open mind, listens, and was well educated that I made any progress. It's not a cure but a good PT has been able to douse the fire, help manage flareups, or at least keep it at a low roar thank god! If I had the money I'd see a good PT twice a week. The two things that my PT does that helps me the most are manual osteopathic techniques and dry needle trigger point therapy. It's all hands-on work. The dry needle trigger point therapy is a godsend it's not permanent but it explodes the trigger points -- of course they can be reset...

nerve pain: I have very severe nerve/neurological-type pain manifested as extremely severe repetitive stress pain (I can't type or handwrite more than a few sentences or use the mouse much -- I use voice dictation -- and I tell you voice dictation sucks for me -so I rarely post to forums). The neurological pain is such that I can touch my fingertips into my thumb and feel nasty burning, knife edge, etc. pain in my neck, upper back, and shoulders (this is what they call "pain centralization").. when I type - when my fingertips hit the keyboard - and I can feel that same nasty pain slicing through my upper back and shoulders, armpits and neck etc. (they call this allodynia). Same thing happens if I tried to handwrite, or do any sort of small-scale repetitive activity. This pain is always a issue -- but it flares severely, especially with dropping barometric pressure, or with "post exercise malaise" and it is ever present if I tried to use the computer. Sometimes the PT work can help with this pain -- but other times I just have to lie low and wait it out you know how that goes it can be days or weeks. Here you also might check out Feldenkrais Therapy" and the information about Tai Chi -- it's similar to mirror therapy in the fact that it's trying to retrain the central nervous system. Once again -- A extremely skilled and well-educated physical therapist I have found to be far better than any medical doctor when it comes to pain. And the closer you are to those Australian PT's -- the luckier you are.

I could go on and on -- my body seems to be a reservoir of different types of pain (funny thing is -- the fatigue nowadays is just so severe that it is taking precedence in my medical treatment over the pain) -- but I realized that I pretty much have said my piece. I would start with checking out the EULAR fibromyalgia treatment guidelines, do my research and find extremely skilled physical therapist who is familiar with a multitude of manual/osteopathic techniques and dry needling

Everybody's body is different and we all seem to have to figure it out pretty much our own -but finding a practitioner of any kind that will listen and think -- the details really matter -- and try to be a problem solver seems to be key also. Pharmaceutical drugs seem to help some people in certain ways -- but for any nasty pain, especially that neck pain you're talking about -- . I certainly haven't found anything that is even close to a panacea. I hear that Ketamine is on the horizon - and it's a pretty serious pain disruptor -- the problem with pain disruptors is that their side effects are also pretty darn fierce..

As far as medical marijuana -- you might as well try it. If I remember right -- there are three pain pathways in the central nervous system -- and one of the pathways involves cannabinoids just stock up on plenty of ice cream and other choice foods.. it certainly will be can bd alot more fun than most other medications..... but beware of paranoia..

Good luck and feel free to PM me - it may take me a while to get back to you -- because it'll be a while before I access the computer again.. I just had to post -- because it's taken me 15 years to glean a few bits of wisdom for my own body -- so I had to share. It's all so complex -- and thus the details matter -- my hope is for XMRV to pan out -- it explains the pain part also. peace and good luck to all!

Voner (voice dictated -- so it may be a bit garbled)

 

[kdeneris]

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.

I'm so sorry about the harsh circumstances you are facing, Meadowlark.

Fiorcet worked for me on, the few times I have taken it. I am thinking about asking for a prescription, but worry about the addictive potential.

I have noticed that when I am having migraines, I am not having PEM, and when I am having PEM, then I am usually not having migraines.

I hope you find some answers and real solutions.

Kim

 

[Otis]

Great thread, too bad we need it!

urbantravels, I think you should try for a cervical MRI because you may he dealing with a physical problem.

I too would recommend seeing a rheumatologist (sp?), some of them don't stick strictly to the 11/18 tender point criteria. Having a fibro Dx can help as it's usually a better lead-in with most docs (and strangers for that matter) than CFS. But I got great care from my rheumy long before pain became a major part if my life. He's probably a very rare exception but they are out there.

There was a thread a while back about the effort to remove the tender point criteria. At first glance it seemed like a good idea, but apparently the notion Is being pushed by a non-believer in an organic cause who wants to land fibro in the name of psychobabble. Not good. Without tender points who needs a specialist to Dx and treat. Any shrink will do. Sound familiar?

I may have seen the one only pain docs in the world who believes in stopping pain in its tracks. I had to be careful not to let him overmedicate me or I could have major narcotic addiction issues and just totally spaced out. But he is a great source for ideas.

Ultram has some mild effect on serotonin (perhaps that's why it's abused, mist likely in huge doses) so caution with SSRIs, etc. is in order. It is purported (as far as I can tell it's true) to be a non-addictive med that acts on opiate receptors. Based on your pain and what you've tried I'd say it's a logical next step.

I've researched medical marijuana and there are strains that can help a wide variety of pain types. If you can find a dispensory that isn't personally threatening I would say give it a try. These days you can eat it and drink it in addition to smoking it.

I'll try to post later on what I've tried, am taking, doses, etc. It's a long list.

 

[Otis]

Here's the link to the thread about the proposed update to the fibro Dx criteria.

http://www.forums.aboutmecfs.org/sh...diagnostic-criteria-proposed-for-fibromyalgia

 

[meadowlark]

August 59 and kdeneris (Kim): thank you so much for your sweet words and the suggestion of Fiorcet. I've never heard of it. I am in Canada, and though googling shows that it is available here, I can't see exactly what it is (though it certainly seems to be Fiorinal-related. Incidentally, I actually take a generic form of Fiorinal called Tecnal--half the price but still very pricey.)

I am seeing the doctor mid-month (again, if the "charity van" shows up) and will ask her about it. Sadly, I have little faith in my doctor. For twenty years I had a sympathetic, imaginative pain doctor who kept up on all the unsolved viral "syndromes." She has now retired. I then found a young gp who was eager to read anything about the illness I brought to her. I think all her patients were crushed when she decided to leave general practice to specialize. My present gp is exceptionally timid about prescribing anything and actually groans when she looks at my file. Naturally I am looking for someone else, but there is a real shortage of gps in Toronto so finding someone better will take a long time.

Re addiction: I was actually put on dilaudid for a year during my two-decade migraine, and when it began to be less effective (as it inevitably does) I prepared to go off it gradually, as doctors suggest. But I had to go out of town unexpectedly to attend to a family emergency, and left so quickly that I forgot to bring it with me. So I stopped it cold turkey, and had no withdrawal problems at all. I've also never had a problem with going off Fiorinal/Tecnal to check for rebound headaches (other than the headache pain itself). I don't want to tempt fate, but so far I've been lucky this way. I do know people who have become very, very seriously addicted to Fiorinal, and that's a frightening situation.

Again, thanks so much.

 

[Carrigon]

I really don't think there's a day that goes by that I am not in pain. Some days are worse than others. Narcs don't work on me and make me sick. So I'm limited in what I can take. For nerve pain and flareups, I'm on Phrenilin, it's a butalbital/tylenol combo. When I come home from doing something like shopping or seeing a friend and I'm flaring, I take that. It does help. However, it does nothing for my lyme arthritis pain.

My my arthritis pain acts up, I end up resorting to Naproxen or aspirin, but usually Naproxen. But I can't take it much because of the acid reflux.

 

[urbantravels]

Thanks everyone for the thoughts and suggestions. Really helps me organize my thoughts and get myself together for the next push. Dealing with my HMO is becoming increasingly difficult because it seems that avenues to treatment shut down once they can blame everything on the CFS. I've been having severe neck pain since at least April, were it not for the CFS I don't think I'd be assuming I should just sit here and take it instead of insisting it get checked out.

Current plan of action: Ask psychiatrist if I could try switching from Effexor to Cymbalta; ask PCP if I can get some Tramadol since the meloxicam isn't doing a damn thing; nag PCP about the neck pain and whether I ought to get an MRI or an X-Ray or SOMEthing to see if I might have cervical stenosis or some similar condition.

*sigh* I remember I used to have a full-time job and many complaints about it; I'd take it back in a heartbeat in exchange for this damn CFS and all the work I have to do just to keep my disabled self going. What other conditions are there where you have to work so damn hard just to get adequate medical care?

Anyways. I have not made any moves on medical marijuana but I did google around and find a dispensary near me that looks to be reasonably legitimate about dealing with medical, rather than stoner, customers. Looking at the ads in the back of the alternative newsweeklies only baffles me - I don't know what they're talking about half the time! I don't speak stoner!

 

[SOC]

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.

That's the way we go for now, too. I'm with you, I'd research the Hep A vaccine. I don't know how Hep A is transmitted, even, so I don't even know what the risk for a kid is. I had to laugh at my PCP's argument (after the fact) for giving the chicken pox booster -- What if my daughter got pregnant someday, didn't have enough immunity, got chicken pox and something bad happened to the baby? Uh, hello? That's not even on the radar. We have FAR bigger health concerns with her. If we were concerned that she might get pregnant (we're not), we could test her immunity to chicken pox. Duh.

I'm all for vaccines, but a little common sense needs to be used.

 

[kdeneris]

Hi, Meadowlark --

If you do a search on this board, you might find some recommendations for good doctors in Toronto. Finding one has made a huge difference in my life. I still have migraines and ME/CFS but at least I know someone is trying to help me, not groaning, sighing, and eye-rolling through the exam.

Best of luck.

Kim

 

[kdeneris]

That's the way we go for now, too. I'm with you, I'd research the Hep A vaccine. I don't know how Hep A is transmitted, even, so I don't even know what the risk for a kid is. I had to laugh at my PCP's argument (after the fact) for giving the chicken pox booster -- What if my daughter got pregnant someday, didn't have enough immunity, got chicken pox and something bad happened to the baby? Uh, hello? That's not even on the radar. We have FAR bigger health concerns with her. If we were concerned that she might get pregnant (we're not), we could test her immunity to chicken pox. Duh.

I'm all for vaccines, but a little common sense needs to be used.

For some of us, the only good vaccine is a dead vaccine

 

[SOC]

For some of us, the only good vaccine is a dead vaccine

LOL! So true!

 

[Carrigon]

We shouldn't have to fight and fight just to get treatment for things. It's so not fair. I have found that if I don't make a big deal out of whatever is bugging me, the doctors just ignore it. And there is a danger in them just trying to pass off everything you have.

 

[Mya Symons]

We shouldn't have to fight and fight just to get treatment for things. It's so not fair. I have found that if I don't make a big deal out of whatever is bugging me, the doctors just ignore it. And there is a danger in them just trying to pass off everything you have.

I have found if I mention fibromyalgia, I will get treated, even for the pain. However, if I mention CFS, I won't. So I don't bother. I think this is because the FDA has approved medication for the treatment of fibromyaliga (thanks for this one Pfizer). Pretty Sad.

 

[Victoria]

My primary diagnosis was FM, but I also have the extra "bonus" of back pain from bulging lumbar discs pressing on the nerve roots causing severe sciatic pain (which I had surgery for the L4/5 disc in June 2008). I also have a couple more chronic spinal disease issues which add to the FM pain (allover my body).

So for anyone who has chronic (often debilitating) pain......................


I could go through the pain meds I've tried, but I think the most helpful thing (since I stopped work in Feb 2010 due to extreme pain & exhaustion, 5 months of severe head & pain behind the eyes - worse than any migraine I suffered), is a combination of things.......

• Get off the computer (as soon as an episode of back, shoulder, neck, head pain starts. And yes, there were many years of constant pain in my life, and I couldn't get off the computer when I worked full-time in an office). Now I'm not working, I have a choice about my daily activities.
• Ensure you drink plenty of filtered water each day - dehydration exacerbates or causes muscle/back pain.
• If you can, go for a very slow, gently walk each day - you may need to start with a 5-10 minute walk for several weeks before you can increase it to any degree. But standing up straight & moving eventually does help. Took me a long time to see an improvement.
• work out what stresses you - delete that stress trigger OR work out ways to minimise it's impact on your life (if you can't delete it) - stress makes you tense & exacerbates many symptoms, especially pain levels
• Get enough restful sleep - I can say for sure. that "restful" sleep helps. I mean real restful sleep, not having your eyes shut for 10 hours. Research has proven that depriving healthy people of sleep for 2-3 days induces the symptoms & pain of FM.
• Find a distraction that works for you - funny movies where you have some good belly laughs really DO help with pain reduction. I took up photography & started going for walks looking for photo subjects in the local Botanic Gardens & the local beach - I was so busy trying to find interesting flowers & other scenes down the beach, that it wasn't til I got home, that I realised how much that distraction & walk had relieved or reduced my pain levels.
• Seek out the company of positive people - friends or family or strangers (including people like my SIL who always has a smile & makes me laugh). I always feel better when I'm around someone who is sympathetic & understands my limitations. That feeling mentally better , also includes a reduction in pain. People who are negative & make me angry, piss me off OR induce feelings of rage & resentment also increase my symptoms. Mind/body/spirit balance is important even if you don't understand why.
• Have a soak in a lightly scented bath (with calming or pain relieving essential oils if you can tolerate them).
• ensure you have a good supportive chair and/or the right bed for you. My new ergonomic office chair supports & is extrememly comfortable. I watch tv & eat sitting in this chair. My dining table & chairs are "gathering dust". The new latex, allergy/arthritis friendly bed I bought 6 months ago reduces the pressure on my hip & shoulder pain. Prior to that, my inner spring mattress would put pressure on my painful hip every time I turned over & this caused me to continually wake in the early hours.
• Ensure you wear comfortable clothing and shoes (or footwear) - forget vanity, fashions & what people might say. Wear what is comfortable, warm or cool (depending on your climate/environment). Being too cold makes you stiff, tense & exacerabates pain.
• Ensure you have a balance of acid/alkaline foods in your diet - I find too much heavy acidic food increases my bowel, stomach/hip pain in particular. High carbs in my diet also makes my stomach/bowel pain increase. Find out which foods/diet work better for you.
• Stop focussing on your health. Now this advice is a weird one. I've spent so many years focussing on my chronic ill health & pain, that I would have said this particular advice is impossible. How can you not be aware of your health, when every living moment is consumed with pain & debilitating symptoms. How can you not be aware of your health, when not only do symptoms remind you, but I personally, have been interested in the subject of health, diet, exercise & alternative remedies for the last 30 years. I have studied alternative diets & lifestyles of long living cultures & indigenous medicine of some races. I have formally studied herbal medicine, aromatherapy, massage, allergies, mind/body techniques & everything in between. SO MY ADVICE IS.......FIND A NEW INTEREST WHICH HAS NOTHING TO DO WITH HEALTH.

And the most important advice is to try each drug or alternative remedy for a reasonable length of time (whatever works for you) - don't give up if it doesn't work initially in the first 24 hours. Give it a chance before you go on to trying another new treatment or drug. Or stop & try something new, but be open to going back to that unsuccessful drug/treatment in the future - your body & most symptoms change or increase/decrease from time to time. What didn't work today, might work in 6 - 12 months time.

In my own case I can usually tell within 24 hours whether something is going to have an improvement. I am so sensitive to drugs & alternative rememdies.

In fact, even when an analgesic or anti-inflammatory treatment works for me, I have to STOP it after about 3 weeks, because the efficacy wears off. So rather than increasing the dose & running the risk of addiction, I chose to stop the remedy or treatment & restart it at a later date.

I find these days, that a short burst of 5 days treatment (at the most) reduces a severe episode to a manageable level. I rarely have these severe episodes (now I'm not working & doing more walking every other day). But make no mistake, I still have some painful or debilitating days every now & then, so I am not under the misunderstanding that I am cured of FM (or anything else) - I have just learned to manage my symptoms better & focus on some healthy new interests.

I am currently seeing a new GP who wants to wean me off my night sleep drug, but after a week of less than optimal restful sleep & a re-emergence of back pain, I am mentally struggling with the whole idea. BUT, I will follow her instructions until I see her again in 5 weeks. I can't report to her that I MUST have my restful sleep, if I haven't tried her instructions. (It's a full 5 weeks because she will be away on holidays for a couple of weeks). She gave me a sample bottle of Melatonin to try, but as it gave me vivid dreams, restless sleep & most umpleasant side effects, I'm putting it aside for the time being.

And keep an open mind (when people/doctors suggest different rememdies & ideas - you'll never, ever know if you never, ever try (or re-try at a later date).

 

[sensing progress]

Have you watched Dr. Lapp's "Stepwise Approach" webinar? He went pretty in depth into pain management. I'd recommend that.

 

[meadowlark]

Hi Kim:

First, I hope you find an answer to your migraines. They are so unbelievably debilitating.

Thank you for suggesting I search the board for Toronto doctors. My brain fog makes me pretty dumb sometimes, and so does depression. I end up feeling purely bewildered when I ought to be looking for solutions.

I searched the board, and found only Dr. Alison Bested, who I've known of for a long time. She is one of the eleven doctors who developed the Canadian Criteria. She holds down a one-woman, part-time ME/CFS unit at Women's College Hospital in Toronto and also has a private practice (her website says, touchingly, that "She has been privileged to treat patients with Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities for the past 18 years.") Her waiting list is notoriously long, and in fact my gp's referral to her has met with no response for a year now. I also called myself--and got no response. The fact that her office is a two-hour transit ride for me (I can't even make it to the subway entrance) is also discouraging. But I will try again and cross the bridge of travel logistics when I come to it, right? You would think that her office might at least know some enlightened pain doctors or gps elsewhere in the city.

I also spoke to a friend this morning. I have been thinking of trying to find the names of HIV doctors who might be interested in XMRV, and she suggested placing an ad for such a doctor in a Canadian medical journal, or some kind of HIV/AIDS publication in Canada.

So I thank you for the kick-start.

P.S. Re fibro: For me, old-fashioned tiger balm on the neck has always been best (though it doesn't work at my pressure points or for pain in other areas). God knows I smell like the world's biggest camphor bottle, but on that point it's lucky I live alone.

 

[Stone]

http://www.thermophore.com/product/thermophore-original-moist-heat-pack-large-back

Pain is the worst symptom for me with my ME/CFS. Opiate pain relievers work for emergencies such as major storms causing terrible emergency pain, but long term regular (daily or semi-daily) use of them renders them completely ineffective. Some antidepressants also help. Elavil (Amitriptlyne) worked well for me in the early years of my disease but caused weight gain and I had to discontinue it. But there are two things that have proven to be the most effective by far. One is the thermophore heat pack. It produces fast and intense moist heat without water. I don't go anywhere overnight without it. It's amazingly helpful. Get the standard original model in the large size. Yes, it's almost $70 but WELL WORTH IT for sure (link above). Also a good massage therapist is a priceless asset. Mine is certified as a myotherapist and I could not function without her treatment. The massage pushes the built up toxins out of the muscles and allows them to heal properly. It's not as pleasant as you might imagine, in fact it's a little painful, but the benefit and pain relief I get is also well worth it. It may take a little time to find one, but once you do, stick with them and seem them regularly if you can. I see mine every two weeks. Weekly would be better but I can't afford it.
I hope this helps.

 

[Otis]

A compounded gel for muscle pain

Compounded gels and creams may be a really good bet for muscle pain.

I currently use a combo a pharmacist cooked up with my neurologist. It's ketoprofin, gabapentin and lidocaine in PLO. It's a very synergystic combo, but possibly expensive depending on insurance. It gets my muscle pain much better than narcotics (even large doses) and I don't know how I lived without it. Much more practical than lidioderm patches which won't stick to my back where the muscle pain is worst.

Here are the details from another post:
The compound is written on the jar as 'Gaba 5%/Keto 5%/Lido 5%', which is 5% of the pain relievers, which are ground up.

I would suggest a trial of 30 or 60 grams. Without insurance its usually $1 per gram. Many compounding pharmacies can do PLO, but I'd try to go local if possible because you want a nice smooth (and somewhat sticky) consistency. If they mess it up, the compound can 'crack' and the solid and liquid components will separate. Alternately the thing can turn into a liquid goo. It's a bit of an art, but stick with it. If you run into problems you can drop the gaba and keto and just do the lidocaine, but insist on the PLO as that makes it transdermal which penetrated the (outer?) layers of the skin.

I can't recall the ingredient name (part of the PLO) but it has fascinating thermal properties. It's liquid in refrigerated form, a gel at room temp and solid at skin temp. Definitely store at room temp. It's sticky on application and I try to let it solidify as much ad possible before dressing. It will stick to clothing some. I've never had it stain clothes but a t-shirt is standard attire for me. It often leaves a residue that will wash out of cotten.

For me 2-3 layers (at 8-24 hour intervals) is ideal. My neuro was surprised at how long it works for me and your mileage will vary, but more than one layer is better. For me I hate to shower because I have start over on the process. My poor wife

Otis

 

[alex3619]

Hi

I tried tiger balm and the like many years ago. The best cheap product I have found is called Ice Gel in Australia. Its active ingredient is just menthol I think (technically two types of hydroxybenzoates), the same stuff as you get in cheap throat lozenges I think. It is the only thing I have found that quickly works on Achilles tendon pain, it is less effective on some muscle pains, it depends on the kind of pain. I have more to say on diet and pain, but I need to be doing something else now, so maybe I will say more later. Bye, Alex

 

[kdeneris]

Hi Kim:

First, I hope you find an answer to your migraines. They are so unbelievably debilitating.

Thank you for suggesting I search the board for Toronto doctors. My brain fog makes me pretty dumb sometimes, and so does depression. I end up feeling purely bewildered when I ought to be looking for solutions.

I searched the board, and found only Dr. Alison Bested, who I've known of for a long time. She is one of the eleven doctors who developed the Canadian Criteria. She holds down a one-woman, part-time ME/CFS unit at Women's College Hospital in Toronto and also has a private practice (her website says, touchingly, that "She has been privileged to treat patients with Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities for the past 18 years.") Her waiting list is notoriously long, and in fact my gp's referral to her has met with no response for a year now. I also called myself--and got no response. The fact that her office is a two-hour transit ride for me (I can't even make it to the subway entrance) is also discouraging. But I will try again and cross the bridge of travel logistics when I come to it, right? You would think that her office might at least know some enlightened pain doctors or gps elsewhere in the city.

I also spoke to a friend this morning. I have been thinking of trying to find the names of HIV doctors who might be interested in XMRV, and she suggested placing an ad for such a doctor in a Canadian medical journal, or some kind of HIV/AIDS publication in Canada.

So I thank you for the kick-start.

P.S. Re fibro: For me, old-fashioned tiger balm on the neck has always been best (though it doesn't work at my pressure points or for pain in other areas). God knows I smell like the world's biggest camphor bottle, but on that point it's lucky I live alone.

Hi, Meadowlark:

I think contacting Alison Bested's office for a referral to a g.p. or pain specialist is one of your best bets, so good luck finding someone in the local area! How amazing that Dr. Bested says she has been privileged to treat ME/CFS patients, too!

And the HIV doctors might be really interested in taking on ME/CFS. I would look up the specialties of HIV doctors online, searching University Medical Centers for their name. Should be easy to find them on the web sites. I would also think that doctors in academic medicine would be most interested in "crossing over" to ME/CFS.

Take care, Meadowlark. I'm really sorry you are so sick.

Kim