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fibromyaliga and distressed - 9/26/2010 7:04:30 AM   
subette101


Posts: 2
Joined: 9/26/2010
Status: offline 		Hello all fellow CM'ers. I have a question. I've always had a high tolerance for pain, in fact it's rather erotic for me. However, here lately my fibro has been acting up, and the pain is unbareable. It's breaking my heart. I want the good stuff and yet it seems I can no longer handle it. Does anyone have any suggestions. I am happily with someone that I adore so much, but this is causing major frustration mostly on my part. I love it, but again it seems I cannot handle it. WHAT CAN I DO? Please help. Thanks everyone and happy chatting!
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RE: fibromyaliga and distressed - 9/26/2010 7:50:19 AM   
lally2


Posts: 2621
Joined: 4/16/2009
Status: offline 		maybe youre relationship with pain needs to change.  but i dont know how possible that is when youve always really enjoyed it.  feeling it as pain and painful and something to submit to in order to reach the cathartic subspace afterwards is and has always been my relationship with pain. 

youre with a guy youre crazy about and so submitting to him and what he enjoys whilst he takes care not to push you too far too hard into areas you cant really go anymore or right now would be another slant too.

just groping in the dark here really - good luck anyway, im sure youll find a solution.

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RE: fibromyaliga and distressed - 9/26/2010 8:09:48 AM   
LadyRian


Posts: 486
Joined: 9/5/2010
Status: offline 		Oh wow, I am so sorry you're experiencing this.  :(
There's fun pain, and no fun pain. Fibro is really no fun pain.


The Alt healers are discovering that fibro responds well to dietary changes, in many cases. Also drinking more water  helps a lot.( Distilled is the best, if you can get it.)

Gentle excercise, such as Tai Chi, with a focus on stretching and controlled movement helps.
Reiki. If you're unfamiliar with it, it's Buddhist based energy work, which has been helpful to many fibro sufferers.  You can find a lot of information about it online. I would recommend Usui Reiki, personally. There are a lot of different types out there now, but Usui Reiki is the tradition with the longest history of practice in the USA. It's been around in Japan since 1922.

One of the theories which is making the rounds is that Fibro is related to overproduction of cortisol in the body, and is  part of an autoimmune response to stress levels.
Anything which reduces stress is really great.

Are you doing the warm showers thing when it acts up, or  using a heating pad?
Also, is it the sort which flares up, or is it the ongoing, seemingly never ending kind?




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RE: fibromyaliga and distressed - 9/26/2010 8:22:15 AM   
Tantriqu


Posts: 2026
Joined: 12/29/2006
Status: offline 		I had fibromyalgia after a car accident from the chronic pain.
The most important thing is to realise it's not a disease, it's just tight fibres caused by muscle tension. Make sure you're not depressed; if you are, you've got to get that treated. Low dose anti-depressants and therapy are the best treatments, and have been proven to help with fibro, since any chronic pain can cause depression.

Then presuming a medical doctor diagnosed you with fibro, the most important thing is to exercise, no matter how much pain you're in; swimming, an extra-large Swiss exercise ball, and belly dancing did it for me! Like Tai Chi, they're all low-impact, and all strengthen your core.
Physiotherapy can also help, especially to ensure your daily stretching routine is maximised.
The worst thing you can do is sit and feel sorry for yourself. The best thing you can do is be active, no matter what your excuse not to do crunches.
Guaranteed you'll feel better within six weeks if you do this, guaranteed you'll feel worse if you don't.

I'm all for hydration, but don't drink distilled water: it'll rot your teeth and cause kidney stones.

Good luck!

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RE: fibromyaliga and distressed - 9/26/2010 11:15:31 AM   
LadyRian


Posts: 486
Joined: 9/5/2010
Status: offline 		Hi Tantrique, slight thread jack here. Where would I find this info about distilled water? All of the impurities have been distilled out, such as the calcium and other mineral salts which encourage kidney stones, and because it's a truly neutral PH, there's no acidic quotient to it.

In the course of my research I've read that this "rots your teeth" is a myth, started by the people who support fluoridated water. Fluoridated water has been indicated to cause some major health problems, as fluoride is a toxic mineral.

http://www.fluoridealert.org/

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RE: fibromyaliga and distressed - 9/26/2010 1:38:54 PM   
DickSteel


Posts: 148
Joined: 3/20/2010
From: Man of Mystery & Intrigue
Status: offline 		I see you are in Tennessee.  Only us international spy types are privy to secret information about cures in other countries.  There are many cures that have yet to meet the 7 year long and 200 million dollar approval process in the USA.  Google "fibromyaliga CMO", there is a cure and you can get it OTC (over the counter) in the USA.  They just can't say it's for fibromyaliga. I saw GreedyTop with "ask me about CMO" in her sig, ask her about it or where to get it, it's cheap.



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RE: fibromyaliga and distressed - 9/26/2010 2:07:14 PM   
Lockit


Posts: 11292
Joined: 5/7/2007
Status: offline 		Actually fibromyalgia is a disease and one of the brain. It can be seen with an fmri according to research done by a Texas University, funded by Ross Puroe. However you spell his name. This study and research was buried and I believe there were reasons for that, that I would rather not get into as it is a hijack of the thread. It effects most of the body in one way or another. Many things can be found to relieve the symptoms, but I know of no cure or I would be on it. I found things that helped a great deal at times, but at other times had no effect. Unfortunately, it is a game of doctor you have to play with your body to see what helps at what time and what to do in other times. Keep in mind that there are different severities of the illness in one person and different people. What works for one will not work for another and what works in one person for a time could not work at another time. There is no one answer fits all.

When in a flare up... good luck finding things that work. You can treat symptoms but that is all you can do. Set up life in as healthy way as you can, don't over do anything and take care of yourself. Other than that... all you can do is ride it out and stressing over it will make it worse. There will be times that a slight breeze hurts and other times when you can take and enjoy pain. Find as much balance as you can, treat the symptoms you do have at the moment and expect for it to always be challenging and you won't stress as much.

A memory foam mattress is my god send. I am more stiff when I wake up, but I actually sleep most of the time unless the clock in my brain is all messed up or I have severe pain, then nothing helps. Good sleep, good attitude, good food, good vit/minerals/enzymes and such and balance in every day life in all ways and you will do better, but will not be cured or be better always.


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RE: fibromyaliga and distressed - 9/26/2010 2:46:26 PM   
WinsomeDefiance


Posts: 6719
Joined: 8/7/2007
Status: offline
quote:

ORIGINAL: subette101

... I am happily with someone that I adore so much, but this is causing major frustration mostly on my part. I love it, but again it seems I cannot handle it. WHAT CAN I DO? Please help. Thanks everyone and happy chatting!


Hello Subette101,

One thing you can try is a much longer warm up while incorporating some sensation play. If your Top/Dominant partner is willing and on board, start with a full body massage (you receiving), progress to a light floggng, and slowly build up the sensations from there.

Hope this helps.

WinD

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RE: fibromyaliga and distressed - 9/26/2010 4:57:53 PM   
thornhappy


Posts: 8596
Joined: 12/16/2006
Status: offline
quote:

ORIGINAL: Lockit

Actually fibromyalgia is a disease and one of the brain. It can be seen with an fmri according to research done by a Texas University, funded by Ross Puroe. However you spell his name. This study and research was buried and I believe there were reasons for that, that I would rather not get into as it is a hijack of the thread.

My neurologist and my rheumatologist both told me about the fMRI and PET scans showing the different areas activated in fibro patients.  It's not been buried.

That said, there are a lot of quack cures out there.  The same with a lot of diseases that have symptoms that vary with the individual and/or require treatment by managing symptoms (as in many auto-immune diseases).

I have 3 auto-immune syndromes and just got tagged with fibro (and I squawked mightily against it).  So far I don't want depression meds, and am using PT (mostly aquatherapy) and tramadol to deal with it. Oh yeah, and neurontin for sleep (I've taken that for years). And an attitude adjustment!

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RE: fibromyaliga and distressed - 9/26/2010 5:03:38 PM   
ResidentSadist


Posts: 12580
Joined: 2/11/2007
From: a mean old Daddy, but I like you - Joni Mitchell
Status: offline
quote:

Actually fibromyalgia is a disease and one of the brain

It's an immune disorder.


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I give good thread.

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RE: fibromyaliga and distressed - 9/26/2010 5:13:43 PM   
Lockit


Posts: 11292
Joined: 5/7/2007
Status: offline 		I disagree, I believe from years of research that fibro is a brain disorder, but this has been argued for decades. lol The brain involvement is the one thing that every fibro patient has. The rest is all depending on other factors that suggest a genetic component, sister illnesses, etc. The neurotransmitters and brain chemicals are faulty. The brain and spine effect everything in our body, combine that with genetic factors, lifestyle, injury, etc. and you get the varied symptoms and various health issues which lead to various answers and prolonged diagnosis time frames.

In some ways this is one of those which came first diseases and we won't know for sure until we do know for sure, but I believe strongly that it starts in the brain and goes from there.


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RE: fibromyaliga and distressed - 9/26/2010 5:50:50 PM   
LadyRian


Posts: 486
Joined: 9/5/2010
Status: offline 		I've had several friends who suffer with it, and so far, all they've been able to do is manage it as best as they can. There doesn't seem to be any cure, not yet anyway. :(

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RE: fibromyaliga and distressed - 9/26/2010 5:55:17 PM   
DickSteel


Posts: 148
Joined: 3/20/2010
From: Man of Mystery & Intrigue
Status: offline 		Us secret agents have many special powers.  Here is a free ebook about the fibromyalgia cure and how it is an autoimmune disorder based in the memory T cells.  There is no catch, no spam, no viruses, no email address required and no code needed.  Just click the link and a copy of the book will pop up in adobe reader. 

Free Book Link 
(requires adobe reader, takes about 15 seconds to load)

Fibromyalgia, like arthritis, is when your autoimmune system attacks healthy tissue.  The memory T cells command macrophages to attack your own body.  With arthritis the T cells attack cartilage.  In fibromyalgia they attack muscle and connective tissue.

< Message edited by DickSteel -- 9/26/2010 5:57:23 PM >

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RE: fibromyaliga and distressed - 9/26/2010 6:07:05 PM   
WinsomeDefiance


Posts: 6719
Joined: 8/7/2007
Status: offline 		When I was first diagnosed with Fibromyalgia, 20+ years ago, the Rheumatologist calld it an auto-immune disease. Over the years, as the disease became a little more acknowledged and understood/researched, I think the concensus was that it was more likely to be a neurological disorder, and even a psychoneurological disorder.

It is now understood or accepted by some, that Fibromylgia sufferers also have other medical issues that can be linked to auto-immune diseases, but that wasn't always the case. As evidence on this thread, there is still a great deal of controversy and confusion, disbelief and bias associated with Fibromyalgia.

This is a huge problem wth the diagnosis, as least it was for me. So may of my concerns were dismissed as "oh that's just your Fibromyalgia flaring up." It took several other severe complications, such as temporary blindness, partial paralysis, my kidneys shutting down, high blood pressure caused by vasculitis etc. before anyone began to stop and LISTEN and stop dismissing my concerns because of the Fibromyalgia diagnosis.

People read various reports and make their on decisions, some based on logic and some not so much.

Sadly, all the confusion and 'beliefs" from specialists down to non-suffering individuals surrounding Fibromyalgia just adds to the frustration many with the diagnosis have to live with. And it can be VERY frustrating.

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RE: fibromyaliga and distressed - 9/26/2010 6:51:43 PM   
Lockit


Posts: 11292
Joined: 5/7/2007
Status: offline 		Natural products are often used in medication and I consider them medication. Just because something says it is natural doesn't mean it is good for you. When someone is marketing a product and have some real financial benefit to their findings, I seriously consider their findings could be self professed and done so for a profit. Time will tell all of course. I am not saying none of these things can work or help, but I am saying that I have watched many, many chronically ill sufferers spend fortunes in products that claimed to cure this or that and help with fibro and guess what... they all still have fibro and all even if there was improvement for a time, were not helped for all time.

I found a product that helped me in a major way, but it didn't do anything to cure anything except a serious depletion of vitamins/minerals and enzymes which now I find is a problem I have in having Celtic's disease and I can't have my wondrous product anymore. I recommend it to a lot of people because it helps in general... but it is just what it is. Some help and improvement in some things. Not Fibro.

Most fibro patients do not have inflammation or damage. There have been cases where there are these things but there were also other illnesses that the patient had that explained these things. I do not have inflammation unless I injure myself or use too much heat... or eat a little too much salt. lol

Some patients with fibro do have auto immunity issues, but not all of them do. Many who have chronic fatigue and fibro, have immunity issues. Those with Lupus or other illnesses will have the problems but not all fibro patients are seen to have immune type issues. Whether that is because they aren't there all the time and come and go, we cannot for sure know, but the only time I have had immune problems was when my chronic fatigue was active and I was no longer in remission.

There are simply far too many factors to argue for sure on any theory. Even my take on it is theory based, but also based on experience and working with many others, professional and not, that were patients and or researchers. I will never forget my favorite. His treatment cost almost three thousand dollars a month.. he was a doctor... he was just as sick as I was and his agency for which he asked me to be national spokesperson for went down just like my respected web site went down. Being too sick to keep up with it all.

No one has the answer and anyone who claims they do is suspect in my book, including me! We know certain things with almost certainty and yet... Joe Blow, professional or not can come up and rip us to shreds with some aspect of it all. It is simply too complicated to know for sure and we each think what we think and one day I hope to the powers that be someone does find the answer! Until then and it is known worldwide to help all patients with fibro... fuck it... we just have to deal.

We have come a long ways since Dr. Cho and thinking Chronic fatigue or yuppie flu was the same as fibro... but we have a long ways to go before we have all the answers!


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RE: fibromyaliga and distressed - 9/26/2010 7:20:27 PM   
Rule


Posts: 10479
Joined: 12/5/2005
Status: offline 		Stop eating. If you do eat, then limit yourself to plain yoghurt. And do take plain vitamin C tablets daily; nothing fancy. Once your symptoms disappear or diminish (after about two weeks), one by one add more food to your diet until the symptoms return; then you will know what foods to avoid.

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RE: fibromyaliga and distressed - 9/26/2010 8:17:48 PM   
thornhappy


Posts: 8596
Joined: 12/16/2006
Status: offline
quote:

ORIGINAL: Lockit
Some patients with fibro do have auto immunity issues, but not all of them do. Many who have chronic fatigue and fibro, have immunity issues. Those with Lupus or other illnesses will have the problems but not all fibro patients are seen to have immune type issues.

I be in the auto-immunity brigade.  Anti-centromere titer >640 (limited scleroderma), Sjogren's by symptom, Reynaud's (with nail bed capillary damage).

Auto-immune stuff goes way back to my great-grandmother.  The last thing I saw indicated it could be a mix of genes and environmental factors (like viruses, toxins, etc.)

And Rule, if I ate nothing but yoghurt you'd have to hang one of those signs on me that says "No flames within 50 feet", and move my computer into the bathroom 'cause that's where I'll be most of the time!

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RE: fibromyaliga and distressed - 9/27/2010 12:53:35 AM   
Rule


Posts: 10479
Joined: 12/5/2005
Status: offline 		Ah, lactose intolerant? That poses a problem. Okay, so then limit your diet to potatoes and chicory - and daily tablets of plain vitamin C. If the symptoms do not go away or diminish, then change to another kind of potato. When the symptoms have gone away, one by one add other foods to your diet until the symptoms return, so that you may know which foods trigger the symptoms.

If there are complications beside the fibromyalgia, I cannot promise anything, but the fibromyalgia itself I expect to diminish or even temporarily to disappear. If possible, do exercise.

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RE: fibromyaliga and distressed - 9/27/2010 7:00:32 AM   
subette101


Posts: 2
Joined: 9/26/2010
Status: offline 		Thanks everyone. I have been on so many medications, including neurotin, xanax, soma, tramadol, celebrex just to name a few, plus lots of herbals, herbal baths as well. I have seen chiropractors, osteopaths, rheuamtologist, neurologist etc. Still.... Plus I never know until the "session" begins that I cannot handle it. We have discussed longer warm ups, but time is limited. It breaks my heart. It means so much to Him and I. He wants to stop and that truly breaks my heart. I was a herbalist and a aromatherapist plus a massage therapist for many many years. Massage does work wonders, however with not being able to work, that is kinda now a luxury in which I feel guilty to do.
Anyway thanks for all the info, I will certainly try all. FUCKING FIBRO! I refuse to give up on our Sessions, so I guess just wish me luck ;)

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RE: fibromyaliga and distressed - 9/28/2010 4:46:57 PM   
voltbang


Posts: 3
Joined: 4/12/2007
Status: offline 		FMS is also used by some doctors as the diagnosis when nothing else fits. My wife was diagnosed with FMS. Talking to others with FMS though, her symptoms were not quite right. A few years later, a differernt doctor diagnosed her with Celiac. Cut out the gluten and the FMS like symptoms all faded in about three days. It's amazing.

But after years of chronic pain, she isn't interested in any sort of pain play, subbing, any of that. She will top me sometimes, but I am a switch and the other side of it just doesn't come out anymore with her. Alas.

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