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Offlineunbeliever
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Fibromyalgia and Chronic Pain
    #7644501 - 11/16/07 02:31 PM (16 years, 4 months ago)

I've recently been diagnosed with Fibromyalgia. It's either that or Mixed Connective Tissue Disorder which is pretty similar. The frustrating thing is that there is no way to actually "test" for either of these two conditions as they don't really know what causes them. Essentially it's a clinical assessment diagnosis, at least that's what my doctor says which matches what I've found in my own research.

The long and short of it is pain. Joint, muscle, tendon and just random pains all over. I've always had hyper-mobility of the joints, I can bend my hand backwards to where my fingers almost touch the top of my wrist. When I was younger this didn't even cause any pain, now it hurts as does any repetitive motion or stress on the joints. Climbing stairs, driving (fucks my right ankle/knee up), lifting, etc. And a lot of times I just hurt for no good reason. Literally from hands to feet, though mainly in the arms/legs and hands/feet.

I've been going to the doctor a lot lately for blood work and other tests to determine what it is and to rule out anything specific. I'm not super happy with my doctor, sometimes I feel ignored and sometimes I feel like I'm not taken very seriously. Right now I have a prescription for tramadol which mostly works, though sometimes I have to take more than directed. My doctor tried to prescribe 500mg Depakote which I have refused to take based on research and talking to numerous friends and family who have direct experience with it.

I'm worried about the future. I hurt this much now and I'm only 27. So far today I have taken one tramadol and a 10mg percoset I got from a friend. I feel pretty good in terms of the body buzz, etc.. but some of the pain is still getting through. It's such a low, almost cold feeling, pain too. It really fucking sucks. At this rate it seems inevitable that I'll be on narcotic pain killers until I die or some magical miracle medical break-through occurs. I've been thinking a lot about alternatives to opiates, and I'm not talking about any of the mood stabilizers or NRI's etc. I've been wondering a lot lately about picking up marijuana.

I've never been a pot smoker, I've actually only tried it 2 or 3 times, twice eaten and once smoked and each time before I really developed this condition to the point I'm at now. So I have no idea if pot would help, though I've heard a lot of people have had success with it. The problem is that I have 2 young kids and the state (and country) I live in would like to take all of that away and put me in prison for using it. The pain however, if it continues like this.. I have to try something. I actually looked at what job openings my company has in other states that have medical marijuana laws.

Anyway, this is a fucking long ass post that's probably boring and useless to most people. What I'm hoping though is that there are people out there who deal with chronic pain.. er well I wouldn't hope that for anyone, but what I mean is that I hope people out there who are having to deal with it have advice. Advice on anything. What drugs work, which don't, how to deal with it on an emotional level and what non-standard, homeopathic solutions may help.

Sigh.


--------------------
Happiness is a warm gun...

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OfflinePsilocin Dreams
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Re: Fibromyalgia and Chronic Pain [Re: unbeliever]
    #7644555 - 11/16/07 02:46 PM (16 years, 4 months ago)

Sorry to hear about this, from what I know fibromyalgia is pretty incredibly painful, like you can't even hug someone because it hurts just to be touched. I'll ask my nutrition teacher on monday what she thinks could be good for you, i know that sounds weird but she is always talking about vitamins and minerals and shit that can help out things like this. I'm sure she will have SOMETHING to say about the subject, you'll have to wait until late monday night though.

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InvisibleGGreatOne234
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Re: Fibromyalgia and Chronic Pain [Re: unbeliever]
    #7644638 - 11/16/07 03:06 PM (16 years, 4 months ago)

I would demand that doctor to give you more than just Tramadol, that stuff is basically useless imo.

And wtf is depakote going to do for you? Isn't that stuff a psychiatric drug for people with compulsive disorders or other mental issues? Ive talked to people who took depakote and reported to me that it some mean sh.t.

Tell that doctor you need percocets or something even stronger that will actually work for you, none of this sissy stuff like tramadol. If he doesn't prescribe it to you that go to another doctor that will.

Sorry, I'm the farthest thing from a doctor I'm just telling you how I would go about doing it.

Doctors in California and Oregon would probably set you up with a license to grow your own medicine for sure.. Im not sure how well it would work for your pain tho compared to opiates, but at least you wouldnt have to deal with doctors that are scared to get their patients hooked on pills. Because you will get hooked on the pills eventually, and when doctors see that happen they will cut you off into an abyss of sickness and pain.

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Offlinezenmunk
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Re: Fibromyalgia and Chronic Pain [Re: GGreatOne234]
    #7646094 - 11/16/07 10:25 PM (16 years, 4 months ago)

Be really careful with all the opiates, it would be very easy for you to get addicted. If that happens you can look forward to a life time of much worse pain.

Good luck.


--------------------
Like a meteor, like darkness, as a flickering lamp, An illusion, like hoar-frost or a bubble, Like clouds, a flash of lightning, or a dream: So is all conditioned existence to be seen. -buddha

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OfflineJoseLibrado
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Re: Fibromyalgia and Chronic Pain [Re: zenmunk]
    #7646171 - 11/16/07 10:52 PM (16 years, 4 months ago)

hey man. I can relate to alot of pain, been through painful things in my life. I have heard that traditional chinese medicine works really well for this. Try natura pathic doctors too, they are usually more concerned with you because they get to know you better.
Do you live in toronto? I might be able to get a number for you, for a doctor. Sweet, glad to help man and remember there is a reason for pain, pain always becomes pleasure - theres no need to hope, the universe is balanced, nothing can escape into the realms of imbalance, not even your disease!
Peace and harmonious.


--------------------
The mind is a creative tool. It searches to protect you, through message sensations(feelings). It is no different than a computer, you need to make sure its anti-virus program is in check and that it doesnt have a script that limits your experience, because of to much precaution.

And remember the computer does not appear to respond to words of anger and frustration - just give it input, in the form of new meanings that you know to be true and its messages to you and the limits it lays out for you, will change.

Guilt is an outcome of believing you are the cause of the problems.

Yet, we are not a cause to something, we see is negative or bad - Unless you believe your intentions are directed towards a bad outcome....

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Invisiblejohnm214
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Re: Fibromyalgia and Chronic Pain [Re: JoseLibrado]
    #7646615 - 11/17/07 03:05 AM (16 years, 4 months ago)

regarding opiates, there was a new study just released pretty much concluding opiates have pretty much no benefit above NSAID's w/ fibro.


And the diagnosis is incredibly specific, btw. Just few doctors are set up to do it. Look at the american reumatology board's definition. Set number of sensitive pressure points w/ so much pressure.

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Invisiblejohnm214
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Re: Fibromyalgia and Chronic Pain [Re: johnm214]
    #7646616 - 11/17/07 03:06 AM (16 years, 4 months ago)

oh and be prepared for many in the medical field to think your full of shit and crazy, whether or not they say this to your face...

Plenty refuse to believe this is a real somatic disorder rather than a psych problem

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Offlinebodynotdead
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Re: Fibromyalgia and Chronic Pain [Re: johnm214]
    #7647042 - 11/17/07 09:13 AM (16 years, 4 months ago)

Physicians have a difficult time diagnosing fibromyalgia as the symptoms are very common to other conditions. In order to be diagnosed with fibromyalgia, a person must have widespread pain in four quadrants of their body for a minimum of three months. In addition, they must also have tenderness in at least 11 of 18 specific areas.

There are several lifestyle and therapeutic methods for managing fibromyalgia.
  • Exercise. Regular physical activity has been found to be one of the most effective fibromyalgia treatment methods. Although muscle pain may increase during exercise, the pain usually dissipates within 30 minutes. Stretching and low-impact aerobic activity (swimming, walking, yoga, or using cardiovascular machines like stationary bikes or elliptical trainers) are most effective.
  • Establish regular sleeping habits. This is critical for reducing pain and improving energy and mood.
    Use relaxation techniques. Studies have shown that people with fibromyalgia benefit from regularly using techniques like meditation, yoga or breath work to counteract stress.
  • Consider cognitive-behavioral therapy. This therapy can teach you new ways to cope with fibromyalgia symptoms and stress.
  • Try acupuncture or massage for fibromyalgia treatment.
  • Try the Feldenkrais Method. These gentle movement exercises help correct poor posture or habits of movement that may contribute to pain.

Nutrition and Supplements
  • Eat well. A diet rich in organic fruits, vegetables, and whole grains will fortify your body's natural defenses and healing system.
  • Eliminate polyunsaturated vegetable oils, margarine, vegetable shortening, all partially hydrogenated oils, and all foods (such as deep-fried foods) that might contain trans-fatty acids. Use extra-virgin olive oil as your main fat.
  • Increase intake of omega-3 fatty acids
  • Take supplements. In addition to a daily antioxidant regimen, Boswellia and malic acid have been reported to be beneficial as a fibromyalgia treatment.


--------------------
"absolute power corrupts absolutely".
Lord Acton,

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InvisibleIcelander
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Re: Fibromyalgia and Chronic Pain [Re: unbeliever]
    #7648010 - 11/17/07 03:56 PM (16 years, 4 months ago)

Check out the book by Dr. Sarno (Mind body connection) This will amaze you.


--------------------
"Don't believe everything you think". -Anom.

" All that lives was born to die"-Anom.

With much wisdom comes much sorrow,
The more knowledge, the more grief.
Ecclesiastes circa 350 BC

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Invisiblebudmanman
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Re: Fibromyalgia and Chronic Pain [Re: johnm214]
    #7648032 - 11/17/07 04:07 PM (16 years, 4 months ago)

Quote:

johnm214 said:
oh and be prepared for many in the medical field to think your full of shit and crazy, whether or not they say this to your face...

Plenty refuse to believe this is a real somatic disorder rather than a psych problem




My gf mom has been faking it for 15 years, we all know she is faking, cause even the things she says is going on has nothing to do with fybomyralgia. She hardly knows anything about it, would run out of meds after like 10 days, she does anything to abuse pills, she even abuses benadrill. So the doctors have a rite to be suspicious, they canceled 90% of her prescriptions, and shes just fine.

Oh but she still has the fybomyralgia, on and she has a bad equilibrium and well what ells, oh yea she has just about anything that is advertised on tv.


--------------------
Everything I have ever said is total bogus bs I am full of crud therefore everything I say should never be taken literal.

And I am mentally unstable.

Edited by budmanman (11/17/07 04:13 PM)

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Invisiblejohnm214
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Re: Fibromyalgia and Chronic Pain [Re: budmanman]
    #7649725 - 11/18/07 12:40 AM (16 years, 4 months ago)

Quote:

budmanman said:
Quote:

johnm214 said:
oh and be prepared for many in the medical field to think your full of shit and crazy, whether or not they say this to your face...

Plenty refuse to believe this is a real somatic disorder rather than a psych problem




My gf mom has been faking it for 15 years, we all know she is faking, cause even the things she says is going on has nothing to do with fybomyralgia. She hardly knows anything about it, would run out of meds after like 10 days, she does anything to abuse pills, she even abuses benadrill. So the doctors have a rite to be suspicious, they canceled 90% of her prescriptions, and shes just fine.

Oh but she still has the fybomyralgia, on and she has a bad equilibrium and well what ells, oh yea she has just about anything that is advertised on tv.




well, I wasn't gonna say my personal opinion of it... didn't want to piss off the poster...

I've known people that seem to have legitimate problems- who am I to say they don't hurt.

But if you work in a medical establishment, especially an ER, you can just about count on one hand the number of fibro patients that will come in during the year w/out a psych comorbidity. Almost everyone is either a drug user, depresion, or anxiety disorder case.

Now I'm not saying its wrong for these people to seek drugs per se, even if its not medically indicated (I'm a staunch libertarian), but you can tell their's quite alot going on with these folks.

These are the same people when you ask to document their pain on a one to ten scale they say 11. 1) that shows you can't follow simple directions 2) since your doing the crossword while I walk into the room, it also shows your full of shit...


But yeah fibro is a weird diagnosis... almost none of the people I've seen have ever been diagnosed in accordance w/ the rheumatology criteria, either

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Offlineunbeliever
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Re: Fibromyalgia and Chronic Pain [Re: johnm214]
    #7650305 - 11/18/07 09:02 AM (16 years, 4 months ago)

Quote:

johnm214 said:
Quote:

budmanman said:
Quote:

johnm214 said:
oh and be prepared for many in the medical field to think your full of shit and crazy, whether or not they say this to your face...

Plenty refuse to believe this is a real somatic disorder rather than a psych problem




My gf mom has been faking it for 15 years, we all know she is faking, cause even the things she says is going on has nothing to do with fybomyralgia. She hardly knows anything about it, would run out of meds after like 10 days, she does anything to abuse pills, she even abuses benadrill. So the doctors have a rite to be suspicious, they canceled 90% of her prescriptions, and shes just fine.

Oh but she still has the fybomyralgia, on and she has a bad equilibrium and well what ells, oh yea she has just about anything that is advertised on tv.




well, I wasn't gonna say my personal opinion of it... didn't want to piss off the poster...

I've known people that seem to have legitimate problems- who am I to say they don't hurt.

But if you work in a medical establishment, especially an ER, you can just about count on one hand the number of fibro patients that will come in during the year w/out a psych comorbidity. Almost everyone is either a drug user, depresion, or anxiety disorder case.

Now I'm not saying its wrong for these people to seek drugs per se, even if its not medically indicated (I'm a staunch libertarian), but you can tell their's quite alot going on with these folks.

These are the same people when you ask to document their pain on a one to ten scale they say 11. 1) that shows you can't follow simple directions 2) since your doing the crossword while I walk into the room, it also shows your full of shit...


But yeah fibro is a weird diagnosis... almost none of the people I've seen have ever been diagnosed in accordance w/ the rheumatology criteria, either




Some people have legitimate problems, some people don't. News at 11. If you had to deal with the range and severity of pain I do I think you'd be a bit more compassionate. I realize there are plenty of people way worse off than I am. Having to deal with throbbing, deep aches all over my body is pretty fucking horrible. So far opiates are the only thing I've found to help. My doc tied to Rx some crazy mood stabilizer but that's got too many negative side-effects and risks to be worth it when something else already works. Though I'm still not sure what I'm going to do in the long run.


--------------------
Happiness is a warm gun...

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Invisiblejohnm214
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Re: Fibromyalgia and Chronic Pain [Re: unbeliever]
    #7655509 - 11/19/07 04:02 PM (16 years, 4 months ago)

Who's to say I'm not compassionate?

All I'm saying is my observations and those opinions of the doc's I've met. Fibro patients are almost always a depresion case, anxiety, or drug/etoh abuse.

Where did I say this wasn't a real diagnosis? Even if it turns out to be psychosomatic, that doesn't mean it's not real, or that you're not really in pain.

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OfflineEightball
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Re: Fibromyalgia and Chronic Pain [Re: unbeliever]
    #7717441 - 12/04/07 09:01 PM (16 years, 3 months ago)

my mom has fibro and she takes 400mg of tramadol a day and 1 or 2 Mobic. Shes also scripted oxycodone but she doesnt like taking it. All this doesnt really help her get mobile unless she pops an oxy then shes good for a couple of hours but then the pain hits her harder from exerting herself. I too have some serious chronic pain and was smoking pot and only taking 100mg of tramadol a day which seemed to help a lot. But due to some asshole stealing several 100 $ from me (and me being unable to work) i can no longer afford pot and my tramadol supply cant make up for the lack of pot's effects. Ive had doctors essentially tell me its psychological after putting me on countless drugs they assumed would work. Just makes me want to smash their knee-caps and tell them the pain is all in their head. Ive actually been dragged out of a doctors office by my mom (twice) because i was ready to kill the doctor for essentially telling me he wouldnt treat me


--------------------
If you're frightened of dying and you're holding on.you'll see devils tearing your life away.
But...if you've made your peace, then the devils are really angels
Freeing you from the earth.

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Offlineschmutzen
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Re: Fibromyalgia and Chronic Pain [Re: unbeliever]
    #7735646 - 12/09/07 07:44 AM (16 years, 3 months ago)

I'm going to be honest and not tell you that this is the worse it's going to get.  I was diagnosed after having numerous blood tests that showed not to be arthritis or Lyme's disease, and seeing a rheumatologist for the "point" test.  Before this I had been dealing with 'shin splints' that wouldn't go away for over a year - this turned out to be compartment syndrome tested with pressure/response needles to my calves, my muscles had grown faster than the tissue surrounding them. 

I needed to have fasciatomies (the tissue sliced open) on both legs.  My physical therapist said that I'd being playing football in two weeks.  It was over two months before I could walk again without crutches.  It helped with the throbbing quite a bit though.

Dr. Whitcomb has some theories as to why the condition exists, though many MRI specialists will tell they are BS.  You will need to register to see most of the site. http://www.stopfibro.com/

I think my situation could be due to head injuries from sports, abuse as a child, or even the Spirit World telling me I need to open my eyes and change my ways.

As for medication I've tried everything.  Muscle relaxers, opiates, benzos, sleeping pills, RSL and Parkinson's meds, and anti-depressants.  I stopped the anti-depressants because I believe my problem is more physical than chemical, and I wasn't to going to risk further damage to my body from side effects.  Some strains of Indica work better than Sativa strains of Marijuana at helping deal with the pain, a large part of the help is from being able to relax IMO, if MJ adds to  anxiety - this can manifest as an increase in pain.  Opiates do not do much for my pain. I've been using on and off for two and half years though. :tongue: I get them from a Personal Care Provider, but as most of the people here mentioned, don't get hooked and johnm214 is spot on when he says most doctors and Chronic Pain Specialists will think you're crazy or a junkie, so be beware. They help distract me from the pain, kind of like laughter is the best medicine, they make me not care about it, but they do nothing to make it go away.  I use recreationally on the weekends and my tolerance is very low.

Benzos and Valerian root do help when my insomnia and anxiety gets really bad.  I tried many OTC products for pain relief: SAM-E with B vit., MSM and condroitin, chlorella, arnica, silica, 5-HTP, fish oil, different acids, etc, etc.  I highly suggest Ginger supplements if your nausea is unbearable.  Some things will help for awhile and then do nothing.  Meditation has helped.  Exercise has helped.  Most importantly for me has been to 'man up' and take a really hard look at myself.

Chinese massages have been helpful, so has MRT (myofascial release therapy), though insurance will not cover these even if provided by a Registered Nurse.  They often will cover PMT (physical medicine therapy) where they may be able to help you find someone who practices something similar to MRT.

http://en.wikipedia.org/wiki/Myofascial_Release

I have also found that I've developed a small allergy to some alkaloids found in potatoes that have been exposed to sunlight for too long.  So really watch what you eat.  MSG is under speculation for many.

My muscles in my shoulder, wrist, and ankle are permanently clenched, my left testicle and my back feel like they're being stabbed. I need to work hard to conceal my pain and discomfort from my family and friends,  but I'm still able to play guitar on occasion, and still able to go for a jog about once a week.  And still able to hold down a full-time job in the Water Operations and Maintenance Dept.  Mushrooms and other psychedelics help me see my life in a new perspective and give me hope and therapy.

If you ever need someone to talk with, shoot me a PM.  Much Love :heart:


--------------------


"Blow up your TV, throw away your paper.  Go to the country, build you a home."

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InvisibleIcelander
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Re: Fibromyalgia and Chronic Pain [Re: schmutzen]
    #7735724 - 12/09/07 08:43 AM (16 years, 3 months ago)

I think my situation could be due to head injuries from sports, abuse as a child, or even the Spirit World telling me I need to open my eyes and change my ways.


Check out the book by Dr. Sarno on this subject. The Mind Body Perscription http://www.healingbackpain.com/books.html There may be a mind body connection to the physical symptoms that will not respond to physical medical treatment. This has been my experience. This book really helped me.


--------------------
"Don't believe everything you think". -Anom.

" All that lives was born to die"-Anom.

With much wisdom comes much sorrow,
The more knowledge, the more grief.
Ecclesiastes circa 350 BC

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OfflineLeanbean
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Re: Fibromyalgia and Chronic Pain [Re: Psilocin Dreams]
    #9101926 - 10/19/08 09:33 PM (15 years, 5 months ago)

I'm so sorry that you were recently diagnosed.  I have fibromyalgia also.  I first got it when I was 25 and it lasted for about two years.  It recently came back after almost four years after I got sick in Mexico.  If you live in one of the states where marijuana is legalized, I would go for it.  I live in California near Carmel and I acutally just got my doctor's note on Friday, but it seems that it is worthless until I get my ID Card.  I thought the place that I went to did it all but apparently not!

I really hope that this does not last long for you.  It can go into remission.  Right now I take Vicodin for the pain and do stretches...sometimes it hurts so much that I cry.  The pills help but I worry about long term effects.  I want a more natural alternative and want to give marijuana a try. 

Hope tomorrow's a better day for you!

Kat

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