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Posted

Fibromyalgia

Am I the only sufferer here in Bangkok or are there others?

Care to share, especially how you reduce the daily headaches you're getting from this horrible disease? Homeopaths, I haven't found any in Thailand. The Homeopath in my homecountry did prescribe remedies that helped but in Thailand.... Anyone tried something different that helped?

Comments suggestions please!

Cheers!

Posted

bring homeopathic remedies with you or ask somebody to bring it to you - should not be posted because they should not be xrayed. Those remedies never expire, if they are kept closed and not contaminated.

do whatever works for you - would reccommend massage treatments, but despite your probable liking of strong massages they don't work as good as the more gentle ones, more for relaxation, like swedesh /classical massage. Start with the shorter treatments, 30 minutes, and progressively longer. You can get a good deal if you pay in advance and not in the massage shop but privately with a good therapist.

Posted

There have been postings in the past from TV members with fibromyalgia or possible fibromyalgia. Suggest you try the search function for this forum.

If you are sure this is what you have (it is a condition that is both under-diagnosed and mistakenly diagnosed quite often) then you should see a specialist as there have been recent breakthroughs in treatment. Specifically some of the newer drugs used for epilepsy and neurogenic pain (lyrica etc) have been proven effective in fibromyalgia.

The following doctors, all at Bumrungrad (which seems to be the only hospital with many specialists in this area) are all English-speaking specialists in auto-immune disease (which fibromyalgia is thought to be). The only one of them I have had personal contact with is Dr. Virat, whom I took someone to see and with whom was favorably impressed, but the others also look good based on qualifications.

Dr. Hiroshi Chantaphakul

Qualifications: Medical School: - M.D. Chulalongkorn University, Thailand, 1992

Board Certifications: - Diplomate of The American Board of Internal Medicine, 1996 -

Diplomate of The American Board of Allergy and Immunology, 1999

Diplomate of The American Board of Rheumatology, 2000

Fellowships: FACR, FACAAI, USA, 2000

Dr. Porawat Makornwattana

Qualifications: Medical School : - M.D. Chulalongkorn University, Thailand, 1995

Board Certifications : - Diplomate of American Board of Internal Medicine, 2001

- Diplomate of American Board of Rheumatology, 2004

- Diplomate of the American Board of Allergy & Immunology, 2004 Fellowships : - Allergy & Immunology, 2004

Dr. Virat Pinyopornpanit

Qualifications: Medical School: - M.D.Chiang Mai University, Thailand, 1988

Board Certifications : - Diplomate of Thai Board of Internal Medicine, 1992

- Diplomate of American Board of Internal Medicine, 1996

- Diplomate of American Board of Rheumatology, 1999

Fellowship: Rheumatology, USA, 1999

Dr. Sutthi Thampakkul

Qualifications: Medical School : - M.D. Chiang Mai University, Thailand, 1992

Board Certifications : - Diplomate of The American Board of Internal Medicine, 1999

- Diplomate of The American Board of Allergy & Immunology, 2001

- Diplomate of The American Board of Rheumatology, 2003 Fellowships : - Allergy/Immunology, USA, 2001

- Rheumatology, USA, 2003

Good luck!

Posted

Yeap,I have fibromyalgia.

Detected in Belgium about 10 years ago.

Luckily for me a very light illness till now.

Only had a lot of problems at this time when I played golf intensively.

Doctors advised me to stop golf.have Shia Tsu massages and take muscle relaxants.

I did it and the illness stabilised(nearly no pain)

Now i took ...20 kg (no exercises exept swimming and walking...else lot of problems coming back)

Shia Tsu:never find a guy/lady who could practice it here in LOS.An american guy was able to make light ostheopathic massages in Pattaya some years ago but went back to California I think.

Only medecine I take now is Myolastan.See a doctor before taking it.There is addiction to it if you take daily

Posted

I have full blown, severe Fibomyalgia. Have had the disease for over 25 years. Every day is a struggle. Especially when I have to work 12 hours a day. I have tried everything. And in my case, only homeopathic remedies helped to some extent. But I have run out, unfortunately.

Thais think I am not friendly becuase I don't smile much. They don't what it is like to live with 24/7 headaches etc. Mornings are especially difficult for me...

I recieved a couple of pm's from TV members with some extremely useful suggestions and tips. I thank you all very much.

  • 1 month later...
Posted

I too have suffered since 2000 with Fibromyalgia.

For people who are unaware its only diagnosed when virtually everything else is eliminated.

There are some 65 different symptons and you could suffer with one or two or the lot !!

The drug that worked for me was Amitriptyline at 100 mg daily which really dumbed down the pain etc and now just take a mantenance dose of 50 mg.

Symptons now are very light but you youve got it for life.

Chivas

Posted

I'd have to agree with Sheryl regarding the Lyrica. I have a band of chronic pain which includes electrical like sensations, pins/needles and pain throught my lower chest, abdomen and all the way round my back for 10 years. Its yet to be diagnosed properly and diagnosis so far have been post herpetic neuralgia, peripheral neuropaphy and others, only thing agreed is its nerve pain.

The trycyclics are first line with neurologists but for many they can be inneffective or side effetcs like confusion, flat mood and dry mouth make it not worth it. Lyrica is really effective for some people with nerve damage related pain. I have pain management appointment next week so i'll report back if i find any new info or good suggestions on how to deal with nerve pain.

Posted (edited)

I was diagnosed with FMS inthe mid 1990s. Fortunately I had a good rheumatologist who tried several different medications until he found the right combination for me. Unfortunately one of the medications that worked well for me, Flexeril isn't in the Thai formulary. A local rheumatologist who didn't understand how flexeril works on Fibromyalgia told me they didn't need another muscle relaxer in the formulary since they had other options. She wanted to prescribe methocarbamol which is not effective. Its truely a shame flexeril isn't available for FMS sufferers here. The key to controlling symptoms seems to lie in the management of stage IV sleep (Delta Sleep). There was a study done at the University of Florida several years ago where healthy volunteers were deprived of sleep. Several days later they developed FMS symptoms including tender points. People with FMS will fall asleep and enter Delata Sleep but with spike alpha waves (awake like state) all night long. The result is despite the fact the person doesn't get sufficient restorative sleep and thus develops FMS symptoms. Medications that enhance delta sleep, Flexeril among them, can help reduce symptoms to a minimum for many people though there will be periods of exacerbation. Fortunately there was another medication that was in the Thai formulary that would work for me though not as well as Flexeril.

Another intervention that works is exercise. Exercise daily even when it is painful to do so but don't over do it. It will help with symptom management.

I have had personal experience with one alternative therapy. In fact I was one of the guinea pigs that tested accupuncture for a state in the US that later approved it for reimbursement though I was not aware I was a guinea pig at the time. I later found the therapy was offered to me because I had a medical background and they wanted my input. When I started treatment I didn't believe it would work. I was amazed after a few sessions. The accupuncturist was in fact a medical docotor who had also studied accupuncture. When I asked for an explantion of why and how it worked he told me that he could never explain it in Western medical terms but that in Eastern terms it made perfect sense. Double blind studies have proven it is effect for some conditions.

The key to effective management of FMS is to find a good physician who understands the disease and who continually upgrades their knowledge. Ask your physican about their experience treating FMS. IF they don't give satisfactory answers find another physician. There is no standard one size fits all treatment for FMS though some physicians act as if there is. Medications that work for one FMS patient may not work as well for another. Amitryptline (Elevil) is often prescribed but for me it gives me a hangover leaving me constantly drowsy. The medication combination my US rheumatologist prescribed, Flexeril and Trazodone (Desyrel here) did not leave me with the hangover though for others it might do so.

The US National Institutes of Health has a page links to articles and studies on Fibromyalgia. There is also a good article from the Arthritis Foundation on the condition. Links are below. I would recommend reading a few of them. Being an informed patient will help you make better decisions on your treatment. Good luck in getting your symptoms under control.

http://www.nlm.nih.gov/medlineplus/fibromyalgia.html

http://ww2.arthritis.org/resources/arthrit..._04_Fibro_3.asp

Edited by ChiangMaiAmerican
Posted

Just to add to ChiangmaiAmerica's comment about accupuncture, my mother has suffered from fybromyalgia for several years, and has regular accupuncture sessions which help her tremendously along traditional chinese medicine treatments. She had almost no success with normal western treatments (in the UK).

  • 4 weeks later...
Posted

Hello, i know so well what you are going through...mornings are hel_l...every morning, i feel dissapointed to be alive...i take my tramadol some coffee, eat if i can which is rare and usually within the next 2 hours, i transform from a zombie to a somewhat human being...i live near rangsit and i am looking for thai/chinese doctors which have studied CFS/Fibro. Thai massage have helped me tremedously but are not a remedy, however they can keep you going if you have them 2 to 3 times a week, length of the massage is absolutely not a factor, what is are: the time you have the massage and who does it. i never go beyond 45 minutes, rarely an hour. Sometimes a 10 minutes massage can make more good than whatever you can buy...i just listen to my body and it tells me when it wants to be touched and massaged strongly...no carresses here....this is my first post to this site, and your message spoke to me.

Let us have a CFS/Fibro club in the Bkk area so we can all share info and get better from that evil thing.

Dancing FoolFibromyalgia in Bangkok

I have full blown, severe Fibomyalgia. Have had the disease for over 25 years. Every day is a struggle. Especially when I have to work 12 hours a day. I have tried everything. And in my case, only homeopathic remedies helped to some extent. But I have run out, unfortunately.

Thais think I am not friendly becuase I don't smile much. They don't what it is like to live with 24/7 headaches etc. Mornings are especially difficult for me...

I recieved a couple of pm's from TV members with some extremely useful suggestions and tips. I thank you all very much.

Posted

For any sufferers not yet aware of ity, this is the link to the US FDA press release approving Lyrica for treatment of fibromyalgia. It is the first drug to be approved for use which is not a narcotic or pain killer as such, but rather works by altering the brain's pain perceptions:

http://www.fda.gov/bbs/topics/NEWS/2007/NEW01656.html

In post #3 I listed the doctors who, by look at their interests and qualifications, seem most likely able to treat this condition. If any of you have any experience with any of them, please share.

For those interested in exploring alternative or complementary therapies, note that St Louis Hospital has a Chinese medicine/acupuncture department.

Posted (edited)
For any sufferers not yet aware of ity, this is the link to the US FDA press release approving Lyrica for treatment of fibromyalgia. It is the first drug to be approved for use which is not a narcotic or pain killer as such, but rather works by altering the brain's pain perceptions:

http://www.fda.gov/bbs/topics/NEWS/2007/NEW01656.html

In post #3 I listed the doctors who, by look at their interests and qualifications, seem most likely able to treat this condition. If any of you have any experience with any of them, please share.

For those interested in exploring alternative or complementary therapies, note that St Louis Hospital has a Chinese medicine/acupuncture department.

I figured sooner or later someone would invent a drug that mimics what hypnotherapy does for Fibromyalgia. I wonder what the side effects are with the drug, as there are none with hypnosis. Also once you are finished with the hypnotherapy all you need is 1 maintenance session every 4 to 6 months and probably no end to the drug therapy.

Edited by John K
  • 1 year later...
Posted

Hi All,

I've just come across this thread and noted some of the responses with interest.

I was diagnosed with FM and MPS a few years ago after wasting thousands of baht and many hours on receiving treatment for prostatitis (the link was a tightening of the pelvic floor muscle group causing similar symtoms). I was so relieved to finally get the correct diagnosis though I was extremely lucky in that my mum, a doctor, has the same and listening to my description put two and two together. Having initially been offered an appointment with a psychiatrist (!!!!!), I persevered and eventually was referred to the physical therapy department where an excellent doctor (Khun Wannee) immediately agreed with my diagnosis, found a whole load of active trigger points and began treating me.

The treatment the was so effective for me was a kind of acupuncture called 'dry needling' where slightly larger needles than traditional acupuncture ones are used to tap on the myofascia at the trigger points and release the 'energy.' This can be extremely painful and I follwed up these sessions with physio and ultra-sound (the day after needling). I cannot express how good this treatment was for me!! I found that it became even more effective as doctor and patient get to know each other; for me this meant being able to explain my sources of pain more accurately and for Khun Wannee being more confident that I could endure longer sessions. After abou 7 or 8 sessions my symptoms were largely gone.

A few months later, I movede up to Khon Kaen province and when my symptoms came back a bit, I was again able to find a great acupuncturist in Srinakarind hospital who had a great understanding of FM/MPS. I began to find that a few sessions would sort me out and for 3-4 months before symtoms came creeping back. Now back in Bangkok, I need some treatment again but may now go down the DIY route; I am not recommending that everyone try this but I am lucky in that my mum is an acupuncurist as well as a convential doctor so has given me some training and insights and the fact that I have further gained knowledge from my treatments and research.

I would strongly recommend fellow sufferers to consider this kind of treatment. I also strongly recommend stretching exercises which help to elongate those contracted muscles. There's some good info on the net about these or go and have a few physio sessions and get training there. Again, I'm lucky in that my symptoms are not that severe and so ave also been able to exercise. Cycling and swimming have been good for me and I have even started running and gym work again but have to be careful not to overdo it!!

Finally, there are things that I have found that aggravate the condition; stress is definately a factor (I'm sure it is a chemical thing). Bad posture is another, particularly in the working environment while using computers. Also getting over-tired and poor sleep patterns. I don't like to treat my condition with drugs on the whole but sometimes a light sleeping tablet for a couple of nights guarantees an undisturbed sleep which has very positive effects in bringing down overall pain/discomfort levels.

I hope this is of use to some of you and will be back to check this area of the forum more regularly. You can PM me if there is anything you want to ask me, too. I really do feel that sharing onfo about this is very important.

Best wishes,

Tommo

  • 3 months later...
Posted

any contacts in Chiang Mai? I 'think' I have it... aching hips/tendons in the morning - a hot bath helps as does Tramadol and Celebrex - aching for first 1 to 2 hours pretty intense - it does ease but never truly goes away - breaks my sleep too every night.

Posted

My wife has had CFS for some four years now. Has had a few ups and downs with the illness. It’s probable that she has some Fibromyalgia as well.

She found Nevermin injections every couple of days stopped her headaches, the doctor showed me how to give them. It’s a B1/B6/B12 ampoule. There is also something called Medivan B6/B9/B12, available in Germany.

Now for the last three months she has been having Hormone treatment and has improved tremendously. Progesterone, Testosterone, 7-keto DHEA and a T3/T4 thyroid. As a trial the Progesterone was stopped for a month and she said she definitely felt worse. She has now been back on it a couple of weeks and I see the difference.

In addition she also now takes a lot of vitamins each day..CoQ10 (200mg), magnesium (250mg), Omega 3 fish oil (2000mg), C (2000mg) plus a multu vit and a multi mineral. Also has been taking Amino Acids and has acupuncture weekly.

So six months ago she was still resting 3-4 times a day, quite a few pains, not sleeping well and struggled even to play 9-holes of golf. Yesterday we played a comp. at Rose Garden, five plus hours walking in the hot sunshine…she lasted better than I did…Today she is fine.

She has also cut down her Amitriptyline to 15mg and sleeps quite well (you can buy them in bulk Polytanol).

Now this treatment is not cheap and I am getting what I consider to be overcharged for some things (well everything actually), I am now supplying most of the vitamin from either the UK or USA…friends bring them over. It may not suite/help anyone else, but this is our experience for what it’s worth. If you want to know where this doctor is, then you can PM me. I have some reservations about the clinic but cannot deny how much she has improved. I do understand what a terrible illness this is, don’t want to give anyone false hope, but this is our experience so far.

We went there as a last resort! So we are giving the guy six months..he says that he will get her back maybe to 80% of what she was…we will see. We always have the fall back of Sheryl’s recommendation and will go and see that guy for a 2nd opinion on her treatment…risks etc.

Good luck.

Posted
My wife has had CFS for some four years now. Has had a few ups and downs with the illness. It's probable that she has some Fibromyalgia as well.

She found Nevermin injections every couple of days stopped her headaches, the doctor showed me how to give them. It's a B1/B6/B12 ampoule. There is also something called Medivan B6/B9/B12, available in Germany.

Now for the last three months she has been having Hormone treatment and has improved tremendously. Progesterone, Testosterone, 7-keto DHEA and a T3/T4 thyroid. As a trial the Progesterone was stopped for a month and she said she definitely felt worse. She has now been back on it a couple of weeks and I see the difference.

In addition she also now takes a lot of vitamins each day..CoQ10 (200mg), magnesium (250mg), Omega 3 fish oil (2000mg), C (2000mg) plus a multu vit and a multi mineral. Also has been taking Amino Acids and has acupuncture weekly.

So six months ago she was still resting 3-4 times a day, quite a few pains, not sleeping well and struggled even to play 9-holes of golf. Yesterday we played a comp. at Rose Garden, five plus hours walking in the hot sunshine…she lasted better than I did…Today she is fine.

She has also cut down her Amitriptyline to 15mg and sleeps quite well (you can buy them in bulk Polytanol).

Now this treatment is not cheap and I am getting what I consider to be overcharged for some things (well everything actually), I am now supplying most of the vitamin from either the UK or USA…friends bring them over. It may not suite/help anyone else, but this is our experience for what it's worth. If you want to know where this doctor is, then you can PM me. I have some reservations about the clinic but cannot deny how much she has improved. I do understand what a terrible illness this is, don't want to give anyone false hope, but this is our experience so far.

We went there as a last resort! So we are giving the guy six months..he says that he will get her back maybe to 80% of what she was…we will see. We always have the fall back of Sheryl's recommendation and will go and see that guy for a 2nd opinion on her treatment…risks etc.

Good luck.

Great - and very best wishes for your wife

Posted
I cannot sing the praises of Lyrica enough. It worked wonders for me with spinal nerve damage pain.

Hi - you got it in Thailand? Pharma? cost? any side effects? how long did it take to work? any info appreciated - my life is pretty much a misery - pain in tendons and nerves - especially hips - takes me an hour - a hot bath and a Tramadol before I can function and I'm always (mostly unconciously) 'stretching' - local hospital just says its the 'nerves' and I should excercise more

thanks

Posted (edited)
I cannot sing the praises of Lyrica enough. It worked wonders for me with spinal nerve damage pain.

Hi - you got it in Thailand? Pharma? cost? any side effects? how long did it take to work? any info appreciated - my life is pretty much a misery - pain in tendons and nerves - especially hips - takes me an hour - a hot bath and a Tramadol before I can function and I'm always (mostly unconciously) 'stretching' - local hospital just says its the 'nerves' and I should excercise more

thanks

No I didnt get it in Thailand however I would assume that it is there as it is discussed in numerous Thai medical sites. Here is one in English.

http://www.thailandepilepsy.org/?page_id=220

Lyrica is its brand name. The drug is actually called Pragabalin. In Australia it is around 4500 baht a month but I would imagine that it will be cheaper if it can be bought in Thailand or has a generic equivilent.

I would suggest that you do some research for yourself and then discuss its suitability for you with a neurosurgeon or pain management specialist . ( "google" lyrica or pragabalin)

In my case it took about 1 week to kick in. The only side effect I suffered was a little weight gain but that could also be attributed to the fact that I went from a highly active extreme sport lifestyle to lying in bed for 6 months overnight. The first week also had some slight "spaced out" moments while the brain adjusted to the drug but it was just like I was I 20 years younger and back in Uni again smoking pot...lol

I also cannot stress enough the value of doing exercise. For me it was absolute agony to begin to walk again and if the team of physios and doctors hadnt kicked my butt I probably would have just given up or gone at a much slower pace. Thank goodness they did because after a while the pain began to diminish and I started to feel and function better. You probably know this but A LOT of nerve pain is "phantom pain" resulting from the body being hurt over a longer period of time and the brain retaining that memory and continuing to send out the signals to the nerves even when the cause of the pain has gone. Lyrica works to "reprogramme " the signals sent to the nerves. That is why the medical guys are telling you to get off your arse and do some exercise, a lot of what you are going through is "in the head" and when you do something repetitively eventually your brain will realise that the cause of the pain has gone and that it doesn't need to keep on sending the signals to the nerves and so it will stop doing it. Also the release of endophins from exercise is a natural pain reliever and helps you feel better. I know it is tough but just get out there and do it ! Tramadol and other nasty stuff like that are gonna kill you in the end so you HAVE to get moving and tell and show your body you are getting better by exercising. Start small and work your way up. For me it started with the epic task of walking to the other side of the room and by the time I got there I was crying from the pain.

I am now off Lyrica and completely drug free. ( Prior to Lyrica I was on opiate based painkillers). I am back exercising in the gym every day for 1 hour, swimming 2 kms a day and riding the bike for 20 kms. I still get "niggles" of pain every now and then but nothing like what I was 6 months ago. At the current rate of my rehabilitation I figure that in 6 months time I will be back to 80% of my pre episode condition and 12 months from now 95%. I will never be 100% but I can live with a 5% decrease.

I wish you all the best and sincerely hope that it is you in 12 months time telling your story of recovery to someone who needs help on TV. There is light at the end of the tunnel. You just have to make the resolution to walk towards it. Best of luck on your journey.

Edited by hagler
Posted
I cannot sing the praises of Lyrica enough. It worked wonders for me with spinal nerve damage pain.

Hi - you got it in Thailand? Pharma? cost? any side effects? how long did it take to work? any info appreciated - my life is pretty much a misery - pain in tendons and nerves - especially hips - takes me an hour - a hot bath and a Tramadol before I can function and I'm always (mostly unconciously) 'stretching' - local hospital just says its the 'nerves' and I should excercise more

thanks

No I didnt get it in Thailand however I would assume that it is there as it is discussed in numerous Thai medical sites. Here is one in English.

http://www.thailandepilepsy.org/?page_id=220

Lyrica is its brand name. The drug is actually called Pragabalin. In Australia it is around 4500 baht a month but I would imagine that it will be cheaper if it can be bought in Thailand or has a generic equivilent.

I would suggest that you do some research for yourself and then discuss its suitability for you with a neurosurgeon or pain management specialist . ( "google" lyrica or pragabalin)

In my case it took about 1 week to kick in. The only side effect I suffered was a little weight gain but that could also be attributed to the fact that I went from a highly active extreme sport lifestyle to lying in bed for 6 months overnight. The first week also had some slight "spaced out" moments while the brain adjusted to the drug but it was just like I was I 20 years younger and back in Uni again smoking pot...lol

I also cannot stress enough the value of doing exercise. For me it was absolute agony to begin to walk again and if the team of physios and doctors hadnt kicked my butt I probably would have just given up or gone at a much slower pace. Thank goodness they did because after a while the pain began to diminish and I started to feel and function better. You probably know this but A LOT of nerve pain is "phantom pain" resulting from the body being hurt over a longer period of time and the brain retaining that memory and continuing to send out the signals to the nerves even when the cause of the pain has gone. Lyrica works to "reprogramme " the signals sent to the nerves. That is why the medical guys are telling you to get off your arse and do some exercise, a lot of what you are going through is "in the head" and when you do something repetitively eventually your brain will realise that the cause of the pain has gone and that it doesn't need to keep on sending the signals to the nerves and so it will stop doing it. Also the release of endophins from exercise is a natural pain reliever and helps you feel better. I know it is tough but just get out there and do it ! Tramadol and other nasty stuff like that are gonna kill you in the end so you HAVE to get moving and tell and show your body you are getting better by exercising. Start small and work your way up. For me it started with the epic task of walking to the other side of the room and by the time I got there I was crying from the pain.

I am now off Lyrica and completely drug free. ( Prior to Lyrica I was on opiate based painkillers). I am back exercising in the gym every day for 1 hour, swimming 2 kms a day and riding the bike for 20 kms. I still get "niggles" of pain every now and then but nothing like what I was 6 months ago. At the current rate of my rehabilitation I figure that in 6 months time I will be back to 80% of my pre episode condition and 12 months from now 95%. I will never be 100% but I can live with a 5% decrease.

I wish you all the best and sincerely hope that it is you in 12 months time telling your story of recovery to someone who needs help on TV. There is light at the end of the tunnel. You just have to make the resolution to walk towards it. Best of luck on your journey.

Many thanks - it ain't fun that's for sure... feels like I've aged 50 years in the space of a year

Posted

There is no locally made brand as Lyrica is still under patent. You have to buy the brand name import, which will be costly.

Like all drugs, it has side effects and contrindicvatioons and you should reseaerch these.

Summary of adverse effects:

Very common: Dizziness, somnolence.

Common: Increased appetite; euphoric mood, confusion, decreased libido, irritability; ataxia, attention disturbances, abnormal coordination, memory impairment, tremor, dysarthria, paraesthesia; blurred vision, diplopia; vertigo; dry mouth, constipation, vomiting, flatulence; erectile dysfunction; fatigue, peripheral oedema, feeling drunk, oedema, abnormal gait; increased wt.

  • 7 months later...

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