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Relief Any Way Possible - 10/1/2009 5:29:13 PM   
lovingpet


Posts: 4270
Joined: 6/19/2005
Status: offline 		A little background, though most of the regulars are familiar, I deal with fibromyalgia and have for probably longer than anyone, including myself, realizes.  I have battled with doctors for years to even get a diagnosis and then realized that this screwball diagnosis is really no diagnosis at all and that there is basically only a shot in the dark that any doctor is ever going to get me to the place of leading a normal life for a person of my age.  I am currently in the process of forcing the doctors to dig deeper.  There are real conditions or other issues that converge in this phenomenon known as fibromyalgia.  I have no problem making them figure it out either.  In the meantime, however, I have no real options left as far as the doctors are concerned.  It isn't that I haven't tried.  We've tried them and they have: failed to deliver relief, delivered inadequate relief, delivered some relief at the expense of nasty side effects that negated the other forms of relief, or a combination of any of these.  Some things I  know from my own medical history are blantantly unsafe for me to try, so those we have let be.

In the past 9 months, I have averaged 1-2 new diagnoses per month.  The doctors lump them all in as par for the course for a fibro patient and are attempting to treat each of them as they are discovered.  Unfortunately, treating or diagnosing some things means I have to forego several key areas of treatment, most notably pain management.

I will admit, since it is liable to come up, that I have not been the best at behaving myself and not doing things to encite my all too eager body to flare up into fibro hell.  I pulled a real number on myself about a week ago, but no need to elaborate on that one.  Needless to say, I am biting and clawing my way through life trying to live on my own terms rather than those the fibro attempts to impose.  It is a bad move as far as physical symptoms goes, but it is what I have to do to keep my sanity and from being thoroughly depressed by the whole situation.

My question is simple.  Fellow chronic pain sufferers, at what point would you consider ANY means of relief without regard for factors that have always made you think twice?  I am considering things that are extremely expensive and likely not covered by insurance, things that are fringe foolishness, and other... errr... possibilities.  I am doing my best not to just snap at this point.  I'd like to know if I do snap that I'm not alone and what to expect.

I have done all the no nonsense diet and exercise stuff.  I have overhauled my entire life.  I am pursuing every accepted medical avenue.  Still my ability to function continues to drop and my pain and exhaughstion rise.  It's like there's no end in sight and that scares me.  I have gone from at least being able to tough my way through everyday life to nearly being bedfast.  I have to turn the tide and fast.  Thanks for reading my little bitch session. 

lovingpet
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RE: Relief Any Way Possible - 10/1/2009 7:11:44 PM   
angelikaJ


Posts: 8641
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Status: offline 		Quick thought:
Have you thought about participating in some of the clinical trials?

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RE: Relief Any Way Possible - 10/1/2009 7:29:14 PM   
lovingpet


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Joined: 6/19/2005
Status: offline 		I already am, which is part of why pointed pain management is an issue.  I can't have started anything new within the past 6 months and my second opinion dx did not come in until about 4 months ago.  Since he wanted a sleep study done anyway, we opted to have me participate on the off chance it helped until my follow up which is still a couple weeks off.

lovingpet

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RE: Relief Any Way Possible - 10/1/2009 7:45:38 PM   
TwistedHeart74


Posts: 722
Joined: 9/17/2009
Status: offline 		lovingpet, I don't have fibro, but I do have chronic back/leg pain. 2 years ago I had major back surgery because of degenerative disk disease. I'm 35 with the spine of a much older person. Due to complications from the surgery, I have permanent nerve damage in both legs. I live constantly with pins and needles in my legs and feet, my toes will turn blue and I'll be cold from toes to mid calf. The back pain has, at times, felt as if it were sucking my sanity out of my skull. I've done physical therapy, had all the tests that you can have done and they still can't figure out the WHY of it all. There is no medication that helps with the nerve damage, I even had one specialist tell me "We can't make you pain free, but we can dope you to the point you just won't care." Um..that would be a resounding NO. I will live the rest of my life with pain that will only get worse as the rest of the disks break down in my back and I have to have more surgery, it's not a matter of IF, it's WHEN.
There have been days I have begged my loved ones to just kill me. I have lain in bed and screamed every time I moved. Other days I can deal with it well enough. I work a 40 + hour a week job and there are nights I come home, get in the shower and just cry.
I may not feel your pain, but I understand what pain can do you to, mentally and emotionally. The only meds that help are narcotics. I refuse to become addicted, so I use them as sparingly as possible. I'm at the point where there is nothing that can be done.
I snapped about a year ago. Completely just went off the deep end. I had had enough. I had reached the point where I was ready to slit my own wrists if it meant getting ONE peaceful moment. Luckily I had my sister there and she helped me get through it. I sank into a deep depression that took months to recover from.
You have my thoughts and prayers, and no, you're not alone. I would suggest, if you haven't done it already, find a good support group for your condition.

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RE: Relief Any Way Possible - 10/1/2009 8:04:24 PM   
lovingpet


Posts: 4270
Joined: 6/19/2005
Status: offline 		Thank you so much!  I am sorry for what you are going through.  I know how difficult it can be.  I am not remotely suicidal.  Quite the opposite.  I'm pissed and want my life back!  LOL  I haven't found a real time local group, but I do have support networks via internet.  It helps in those darker times.  Gentle hugs and all my best to you darlin!

lovingpet     

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RE: Relief Any Way Possible - 10/1/2009 10:47:19 PM   
thornhappy


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quote:

ORIGINAL: TwistedHeart74
I live constantly with pins and needles in my legs and feet, my toes will turn blue and I'll be cold from toes to mid calf.

Are you getting treatment for regional pain syndrome?

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RE: Relief Any Way Possible - 10/1/2009 11:24:55 PM   
TwistedHeart74


Posts: 722
Joined: 9/17/2009
Status: offline 		thornhappy, I'm not getting treatment at all right now. I've got to get insurance with my job before I can do anything else.



lovingpet, I went through the suicidal part and then I got PISSED. Angry just doesn't cover it. I realized that I had hit a point of wanting to quit and that wasn't me. *hugggsss gently back* I think it's wonderful that you have support, stay strong and don't back down. I think attitude has a bit to do with how our bodies deal with things. Sending lots of positive energy your way!

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RE: Relief Any Way Possible - 10/2/2009 5:25:19 AM   
sirsholly


Posts: 42360
Joined: 9/7/2007
From: Quietville
Status: offline 		LovingPet...

If i were you i would try to forget about the search for a diagnosis until the pain is better controlled (easy for me to say). Pain can screw up your judgment, as i am sure you know, so agreeing with a  diagnosis and agreement to treatment can be made out of desperation.

I would suggest a pain clinic.


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RE: Relief Any Way Possible - 10/2/2009 7:34:16 AM   
lovingpet


Posts: 4270
Joined: 6/19/2005
Status: offline 		Thanks so much twisted one!

Holly:  I don't have a pain clinic all that near to me, but I am trying to get a referral to the one at the university I am using even though it is over a two hour drive.  The one here is strictly for cancer patients.  My heart goes out to those who suffer from cancer, but I also find it very pretentious on the part of the doctors there to be so exclusive as if others cannot suffer massive levels of pain.  The sad part is that my mother has been with their billing office for years and they know her personally and still won't take me on as a patient. 

I am just afraid if I am not feeling so bad that I won't be motivated to keep going and get to the root(s) of it all.  Every time I turn around it is a new dx and more drugs and more equipment and less of a life.  I want the key one or two things that make it all make sense and work to treat them instead of trying to pacify each individual symptom, which is basically what all these diagnoses are in my head.

Hopefully, I can get on with a better pain clinic.  Hopefully, I can switch doctors to one that doesn't make me want to slug him.  Hopefully, I can get better answers and relief.  In the meantime, I am left with some rather extreme things (financially, medically, even legally) that are left to even try.  There is talk of installing e stim and a morpheine pump directly in my spine.  More people than I can even count have suggested dealing with the risk and trying marijuana.  I have taken more than a short look at things like accupuncture and such despite the fact that my insurance covers absolutely NOTHING in the alternative vein.  My herbalist is out of ideas.  Seriously, I'm at a loss and I am just frustrated as hell.  I am trying very hard to not consider any of the above because clearly the consequences are pretty steep and they should all be of pretty well last resort.

Thanks for all the support.  Any other ideas, please, I'm all ears.

lovingpet

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RE: Relief Any Way Possible - 10/2/2009 8:33:18 AM   
Mercnbeth


Posts: 11766
Status: offline 		hi lovingpet,
 
a few years back one of the MD's this slave was complaining to explained that there was no way to eliminate the pain and discomfort this slave was experiencing...only a way to "manage the symptoms".
 
for this slave, "manage the symptoms" of chronic pain means to get this slave's head in a place where she doesn't care that it hurts...not that the pain doesn't exist...like a virtual Demerol drip.
 
to that end, this slave started using cannabis, 7 years before it became legal for medicinal use in The Great State of California.  it has been nothing short of a blessing.
 
best wishes to you!

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RE: Relief Any Way Possible - 10/2/2009 11:55:58 AM   
Rule


Posts: 10479
Joined: 12/5/2005
Status: offline
quote:

ORIGINAL: lovingpet
I have done all the no nonsense diet

Have you tried the diet that I have proscribed several times on these forums for chronically ill people? My recommendation to you: stop eating for two weeks, except for daily plain vitamin C tablets. If you must eat, then eat plain yoghurt only. After two weeks please let me know if your condition has or has not changed.

Usually I myself daily take four to eight 500mg vitamin C tablets.

Oh: And NO drugs.

Edited to add for clarification: when I said 'stop eating', I meant everything, and that includes tea and gnawing on your nails.

< Message edited by Rule -- 10/2/2009 12:07:44 PM >

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RE: Relief Any Way Possible - 10/2/2009 1:30:50 PM   
lovingpet


Posts: 4270
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Status: offline 		beth:  I am usually pretty good at tuning the pain out.  It is when it gets to these higher pitches that I am just completely unable to handle anything.  I am glad I am not the only one who would consider the balance of the law versus my health to be worth tipping in my favor.  I don't know if I can really go there.  I have the consideration of ums, but it is a real temptation for sure.

Rule:  I'm not sure if I would be able to do what you suggest.  As a "side effect" of the other conditions, I have issues with blood sugar (unstable, neither always elevated nor always low).  I think consulting the doc would be wise first.

As comes as no surprise, I have been keeping after other people today and not doing much for myself, so I had probably better attempt to behave the rest of the day.  All input is welcomed and appreciated!

lovingpet

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RE: Relief Any Way Possible - 10/2/2009 1:41:54 PM   
Lockit


Posts: 11292
Joined: 5/7/2007
Status: offline 		((((((((((((Lovingpet)))))))))))))

Narcotic's are the only relief I could get if I had someone who would read my medical records and give me some assistance. Since the one place I can go, labled me without an examination, without looking at medical records and going on the list of medications (drug seekers have a similar list) I cannot take because of the illness they say I made up and when they google it, think they are expert on after reading one page. Without the meds I am nearly getting to where I cannot bare to walk or stand up. The not being mobile is making things worse and life and what I had left is... dead.

I'm in hell and in the same boat you are in. All I can say is we manage to get through it. I know you fairly well and I know you will get through this no matter what. You know where I am hun. Even if you can't see me, I am most likely there or will be soon.

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RE: Relief Any Way Possible - 10/2/2009 1:53:45 PM   
Rule


Posts: 10479
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quote:

ORIGINAL: lovingpet
Rule:  I'm not sure if I would be able to do what you suggest.  As a "side effect" of the other conditions, I have issues with blood sugar (unstable, neither always elevated nor always low).  I think consulting the doc would be wise first.

Ignore the doc. What has he done for you so far?

If I am right, your condition - including your blood sugar - will start to normalize almost immediately. You can always have someone with you the first day, in case that you do loose consciousness because of low blood sugar.

Have you ever lost consciousness because of low blood sugar?

Edited to add: In any case, there are some milk sugars in plain yoghurt. So if you eat three litres of yoghurt per day, you ought to be fairly good.

< Message edited by Rule -- 10/2/2009 2:19:28 PM >

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RE: Relief Any Way Possible - 10/2/2009 5:20:58 PM   
sasseeNshy


Posts: 120
Joined: 4/12/2008
Status: offline 		lovingpet....I seriously appreciate your pain.  In all honesty, I think your biggest problem lies in the fact that most of the medical/legal community considers "fibromyalgia" as the "designer diagnosis of the week".  Fibromyalgia is to them, simply a diagnosis of "it hurts everywhere" - 18 trigger points gets the diagnosis.  Some are better adapt at handling this pain, but to those who suffer the pain interfers with every aspect of their daily life.  Unfortunately, as much as I hate to say it, I don't think this disease is treated as seriously as it should be.

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RE: Relief Any Way Possible - 10/2/2009 5:31:21 PM   
Lockit


Posts: 11292
Joined: 5/7/2007
Status: offline 		That and they don't have the correct doctor's researching it. We need neurologist! Also doesn't help when money for research is funneled to MS. Had that money not been funnled away we may have more answers. I do wonder why Ross Puroe's research was buried, although I don't have to think too long and hard as to why it would be beneficail to hide the facts.

We are the garbage can dx that we have been since the early nineties when more was known and the public becoming aware. Just as with Aid's when they first saw it. They said they only needed a shrink. There are doctors that believe fibro can lead to death... just not as often as Aid's.

It is too easy to explain us away, find fault with us becasue they are limited in explaining it all or finding what needs to be found. It is a form of medical discrimination in my opinion and surely neglect in many cases.

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RE: Relief Any Way Possible - 10/3/2009 1:37:36 AM   
sirsholly


Posts: 42360
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From: Quietville
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quote:

to that end, this slave started using cannabis, 7 years before it became legal for medicinal use in The Great State of California. it has been nothing short of a blessing.
It is the greatest pain reliever there is. Depending on where you live it may be legal to have it prescribed in pill form (THC). 

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RE: Relief Any Way Possible - 10/3/2009 4:32:45 AM   
Louve00


Posts: 1674
Joined: 2/1/2009
Status: offline 		I'm pasting a link for you that may or not be helpful to you, for fibromyalgia.  Maybe it will and maybe it won't give you some ideas.
Good Luck to you. 

http://www.lef.org/protocols/immune_connective_joint/fibromyalgia_01.htm

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RE: Relief Any Way Possible - 10/3/2009 1:24:13 PM   
Lockit


Posts: 11292
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Status: offline 		I think it is a good idea to do the normal things human's need to remain healthy and active, but think it is a huge mistake to treat something misunderstood with a certain protocol with the agenda of selling a product and using studies that may or may not actually have a key to understanding fibromyalgia, to promote an agenda.

Throughout the years I researched, took part in support sites, wrote things, counseled and helped prevent suicides over illnesses such as fibro; I have watched one doctor after another, one company after another and many with an agenda of making money off the ill and desperate, that it makes me want to barf on them all.

Until something is truly understood... it is anybodies guess as to what is best. And if we are so different in how our bodies function or don't function... why would the typical answers be of benefit?

I really hate that they push the depression thing as most I knew had depression AFTER the onset of these illnesses and their lives being changed. Not before or as a result of hormones... easy answer there bud's! How they make such a big thing of what seems reasonable in an illness that is anything but reasonable. If I listened to the doctors or these people pushing this or that, I would be dead now because my body did not act normally and their typcial solutions would have thinned my blood and I would have bled out like my mother did. It can be dangerous, some of these solutions and very costly. I knew a doctor who had cfs and fibro. He created a protocol for himself that cost two thousand dollars a month that his wife had to pay for. He was a great man and I love him dearly... but he was wrong. With all that expense... he still had to quit doing everything he was trying to do to help us all. And his protocol basically covered a lot that people put out there for all of us to consider in being well or feel guilty in if we don't do it because we didn't try the way we should.

If they find that all fibro patients are the same and suffer all the same things as are found in some of these articles... then their solutions might make sense, but they can't and they don't.

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RE: Relief Any Way Possible - 10/3/2009 4:42:13 PM   
DavanKael


Posts: 3072
Joined: 10/6/2007
Status: offline 		Lovingpet and everyone who's posted who experiences chronic pain, I understand: it's a bitch. 
Mine's from several injuries and generally, unless I am really in agony, people wouldn't ever know. 
This may sound strange but a few months ago, I started taking martial arts courses and my pain level has decreased markedly.  I think drugs have their place and beth's suggestion is a great one for pain management if you're able to minimize the legal risks but holistic management of pain is a preference for me: looking at massage, acupuncture, etc. 
Best wishes, 
  Davan

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