Fibromyalgia

[Muzza]

Modern philosophy is that life is supposed to be comfortable... that if something is wrong then you should do all within your power to change that. We have medicines for everything, courses for anything, and prayers focusing on one thing. Our well being.

We get so busy trying to fight the problem, trying to remove the pain, relieve the suffering, ridding ourselves of the problem. We start to lose sight of where we are, of who we are, and of what we do.

If someone talks to you about problems they're having, do you listen? or do you glaze over what they're saying with the obligatory line 'you need healing!'? Do you listen to them? Try to relate to them? Attempt in any way to understand them? Or do you try and be the 'fix-it person'?

When Jesus was in the garden of Gethsemane praying, he asked God to take the cup of suffering away from him, but that ultimately, God's will would be done through him. How many of us do this? How many of us take the time to look at our lives and say honestly to God 'your will be done!'?

Do we take what we are going through and learn from it? Do we pray about what we're going through and ask God for strength and wisdom to use our suffering to furthur His kingdom? Or do we demand healing in His name and try to avoid any earthly responsibility or burden from what we're going through?

A lot of people in this world are suffering, in a lot of different ways. Can we reach out to these people honestly and say to them, 'I know what you're going through...' Or are we of the mindset, if someone has a problem, all they need is prayer! How understanding is that? I mean really! Who wants to hear that when all they may want is for someone to listen to them and show that they care?

When people come to you and ask for help, how accepting are you? How understanding are you? How compassionate? How trustworthy? Can we still listen to people? Rather than just shooting off on the healing spiel... can we give someone the time and care to just listen?

What about someone has been sick for years and would appreciate someone who would listen to them without trying to fix everything for them. When all people do is say 'you need healing', 'we need to bind this affliction in the name of Jesus', or any of a dozen other responses, it is quite frankly unhelpful and can be very hurtful.

Have some peace. Some compassion. Perhaps some common sense. Instead of jumping on the person and hijacking what they're trying to talk about... just LISTEN. Be still and listen...

 

[Muzza]

How many people really have a clear idea on suffering? Know what suffering is? Can relate to suffering?

Sadly in the world as it is today, there are far too few people who understand. One of the large factors in this ignorance is, today's mentality of 'look out for number one'.

We as a society are far too self absorbed, centred entirely in on ourselves and our own problems. We fail to realise that there are other people around us in as much, if not more, pain than we ourselves are going through.

When I say pain I don't limit that to just physical or just emotional. It encompasses the whole spectrum of the sensation of pain.

The average person is too busy trying to work through their problems, be they big or small. They don't have either the inclination or the desire to find out if others around them are in pain, let alone the ability to help those others with what they're going through.

This is something that is going to have to change unless we want society to become so self centred as to not see past your own realm of experience. It's only in reaching out to others and attempting to understand them in and through their pain, that we ourselves become able to solve our own problems.

Compassion is a commodity far too few and far between in our country. Its always, 'oh thats their problem not mine', or 'get over it, its not as bad as you think it is', or 'well theres always someone worse off than you, so stop complaining'. We have lost the ability to reach out to others in a way that will help them, rather than lay new hurts on their already existing hurt.

What does it hurt to ask someone, 'how are you?' and really mean it? I guess if you don't have the patience or the desire to listen to them, then it wouldn't be a good idea. But isn't that just the problem? That we don't want to listen to others, we can't be bothered being there for someone when they need it.

So coming back to the beginning question... how many people really have an idea on what real suffering is? The answer is, far too few.

Suffering is not, having a sore foot for a few days, straining a muscle in your back, hurting your knee and being unable to walk properly for a few weeks. Suffering in it's largest form is spending every day in that state, not having relief from pain, or tiredness, or mental anguish. Its not a flash in the pan phenomenon. Suffering is a lifestyle.

There are people that spend every day for years suffering from something, and those people learn something that the rest of society will never know. That life does contain pain, and that true happiness and joy isn't found in a lack of suffering, but is demonstrated in spite of that suffering.

Next time someone tries to talk to you about problems they're going through, instead of cutting them short, or overtalking them with your latest issue, try listening to them. Give them the respect they deserve, and let them share with you what they're going through. You might learn something.

 

[Muzza]

I do have more that I could post, but I don't want to overcrowd the board. If anyone wants to read them, then let me know.

 

[RJ1]

Ah, thanks for sharing, Muzza. Definitely words of wisdom.

Was anyone else in here using Vioxx? My doctor prescribed it but now it's off the market. It wasn't helping anyways. I may as well been taking tic tacs for pain. I see her again on the 14th. I guess I'll get something new then but to be honest I've gotten so used to living in pain that I just don't think much of it, unless it gets so bad I can't move. Then I get cranky.

 

[Dzhessika]

Hi There,

I'm not on vioxx but I can relate to you and having to try meds after meds and nothing works , don't you just feel like a human ginuea pig at times,I know what the pain is like i've had alot of chronic pains since I was 15 but am slowly getting healthy I hope *knocks of wood* and half the time you just want to give up because No one will believe you that its there, like you're just making it up and its in your imagination or yet that you're depressed then they issue all these test where you have to drink horrible stuff just for the results to come back normal ,I'd give any thing to see a doctor drink that just once!!!I know i'm just rambling here but I wanted you to know you're not alone and i'll pray for you that they would find something that truly works and the pain will ease up !Have a great day!

Jessica

 

[feathergirl]

Thanks Muzza

Yeah...I went to the doctor's a couple months ago & she gave me vioxx for some probs I was having...I never used it though. I don't have fm or anything. Just probs with my knees & back & cramps like once a month. I think the doctor just gave them to me cuz she didn't want to deal with it...that and at the time I didn't have any health insurance. Most of the time pain meds don't work anyways...so all I can do is wait it out(and cry if its really bad). Sometimes I get so bad I'll have to go home from uni/work/friends & I hate that. I guess you guys understand that more than I do. At least mine isn't constant pain. Just once a month or so. See ya.

 

[night2day]

I used to be on Vioxx about 2 years ago...but had to be taken off due to it not wanting to play nice with my GERDS. Now the only type of pain relief I get from flu-like achy muscles is from half-doses of Ultram taken 12 hrs. a part.

One has to really wonder about the FDA along with it's the drug approval process when they can't even take in consideration the results of long-term usage.

 

[night2day]

...Next time someone tries to talk to you about problems they're going through, instead of cutting them short, or overtalking them with your latest issue, try listening to them. Give them the respect they deserve, and let them share with you what they're going through. You might learn something.

Thank you. Words to well remember.

A majority of those who are more willing to listen methinks who are those who are more able to relate to the specific problem or, in this case, chronic conditions. Yet, even then we're all different and affected differently. Sometimes even being recognized and taken seriously helps a great deal.

 

[RJ1]

To all in this thread! You're very sweet, compassionate people. I feel a lot better just knowing I'm not alone, although I do wish no one else had to go through this.

Yep, I do feel like a human guinea pig. I was tested and retested. poked and prodded this whole year. I didn't get a diagnosis until just over two weeks ago. Now we're in the 'experimenting' stage of meds. Take this, see if it works, if it doesn't we'll try something else. That's just ducky but in the meantime I have had moderate to crippling pain every single day of my life for a year now. I'm getting tired and frustrated. I'd give anything for just one pain free day. I'm just frustrated tonight. Tomorrow will be better. If nothing else I'll feel better because I got this off my chest.

Thanks for letting me rant and thanks for sharing. It really does help. You people in here are the best.

 

[night2day]

I wouldn't mind getting out other than doctors' visits an short trips to Wal-Mart. I sometimes end up complaining about it. Only thing is...a minor trip to more than one or two places it's: "I need to go back home."

Reminders are good. Just...uh...different ones are better.

 

[praisegirl2]

I also have fibro. for about 4yrs now. Most days are bad. I have no insurance so can't go to the dr very often and no meds that help. I took Vioxx it helped some but not on really bad days. I haven't taken it in a long time. No it is off the market anyway. this week has been really bad for me. I hurt so badly from head to toe sometimes I don't know how much more I can take. I can't walk my dog or play with the kids. I can't vaccum my house or sweep or mop. If I go to the store I can't walk the next day.
It is not a fun thing to have this.

 

[RJ1]

I also have fibro. for about 4yrs now. Most days are bad. I have no insurance so can't go to the dr very often and no meds that help. I took Vioxx it helped some but not on really bad days. I haven't taken it in a long time. No it is off the market anyway. this week has been really bad for me. I hurt so badly from head to toe sometimes I don't know how much more I can take. I can't walk my dog or play with the kids. I can't vaccum my house or sweep or mop. If I go to the store I can't walk the next day.
It is not a fun thing to have this.

I'm so sorry to hear you're going through this thing too. I wouldn't wish it on anybody.
I'm lucky in that I have insurance, unlucky in that nothing being offered is helping much. I honestly can not remember what it was like to have a day free of pain.
I know exactly how you feel. Vacuuming right now would knock me down for three days or more. It's ridiculous. What's really bad is I can't do my hobbies right now either. Even holding up a book for a little while to read it can cause severe neck and shoulder pains.

Please hang in there. You can get through this. We're here for you. If you ever need to talk just post here or PM me. I am more than happy to listen or gab any time.
I know this is hard and I see no end in sight either but those few good days are worth the bad. Plus just being there for the family means everything to them. I've found out the hard way that my worth has nothing to do with how much I can do for others. It comes from just being me. Who knew? LOL! The same is true for you.

 

[night2day]

...and half the time you just want to give up because No one will believe you that its there, like you're just making it up and its in your imagination or yet that you're depressed...

I think this is one of the most frustrating aspects of FM and the illnesses in the same family. That family members, friends, and doctors don't know much about the illness, thus can't do the correct tests for it, and don't know how to treat it. My experience is good doctors will at least tell you if they simply don't know of something. The bad ones always try to blame the patient in some way, such as to say they have depression and need to see a psychiatrist, which makes it actually worse. Ignoring the blatant abnormalities and inconsistencies present they simply don't know how to explain.

On the FM newsgroup on usenet the posters term it as "IAIYHS" (It's All In Your Head Syndrome) since that's always what a 1/3 of doctors try to claim. (The second 3rd acknowledges it but doesn't know what to do. The third 3rd thinks everything is FM.)

Course, that's forgetting that illnesses such as diabetes, rheumatoid/osteo-arthritis, multiple scorolsis, and, migraines were once claimed to be caused by mere stress too. Today we now know save for the osteo-arthritis and migraines they're auto-immune diseases, while the osteo is an bone degeneration illness and migraines are a neurological disorder.

 

[Noor Saffiyah]

No more meds for me. Not if I can help it. All they did for me was have me walking into walls and the like. I can already do that without meds!!

There are quite a few warnings against taking Nuerontin and the like as well. Stay away from the Epilepsy meds!!

 

[night2day]

...Stay away from the Epilepsy meds!!

Er...doh!!!

I'm on Depakote 500 mg twice a day to prevent severe reoccurring migraines. It's really helps, though gives me side effects such as tremors. Although, I'd rather deal with the tremors rather than the migraines thank you.

 

[night2day]

Those who are on meds of any kind for this or the side conditions: The docs ever tell you to somehow find a way off the medication...but they never really tell you how to get off of them?

And it's known that the medicine is helping since in that at least it is keeping the symptoms under control to a certain point than when not being on the medicine at all. But isn't that all they're treating...the symptoms and not the main cause?

I have the usual 3 month appointment with the family doctor early next month. I was thinking of showing him the list of viruses (posted earlier in the thread) and ask what he thought. Mine was sparked by a virus (Mononucleosis->CFIDS/ME->FM) And FM is usually caused by a virus or injury. Has anyone visited an Infectious Diseases specialist regarding their condition?

 

[RJ1]

No more meds for me. Not if I can help it. All they did for me was have me walking into walls and the like. I can already do that without meds!!

There are quite a few warnings against taking Nuerontin and the like as well. Stay away from the Epilepsy meds!!

I think it depends on a lot of things. Some people can take meds and not have adverse effects. Some people's quality of life is so low without meds that they feel it's worth a chance to go ahead and take them. FM can be quiet severe for some people, so much so that they have no life at all without meds. It all just depends on the invidual, how severe their symptoms are, what kind of life they have off of meds, how well their body handles meds and of course what kind of meds they are getting.

As for me, I just wish they would find a cure so I could go back to 'normal'.

 

[Muzza]

I went to a naturopath the other day, who told me some interesting stuff about how my body is doing. The condition it's in etc. Basically i'm depleted in all the basic minerals that my body needs to function properly, as a result, my spleen, one kidney and liver, are not working as well as they should. Which is just exacerbating the symptoms.

Has anyone here heard of something called 'Coenzyme Q10'? It's something the person got me taking, i've only been taking it for 2 days, so it's not long enough to notice anything. But basically it's supposed to help energize my bodies cells again, so that I actually have energy to do stuff again, rather than running on a flat battery.

 

[feathergirl]

I haven't heard of either a naturopath or coenzyme Q10...but that'll be awesome if they help you out. Hope it helps. see ya

 

[night2day]

I went to a naturopath the other day, who told me some interesting stuff about how my body is doing. The condition it's in etc. Basically i'm depleted in all the basic minerals that my body needs to function properly, as a result, my spleen, one kidney and liver, are not working as well as they should. Which is just exacerbating the symptoms.

Has anyone here heard of something called 'Coenzyme Q10'? It's something the person got me taking, i've only been taking it for 2 days, so it's not long enough to notice anything. But basically it's supposed to help energize my bodies cells again, so that I actually have energy to do stuff again, rather than running on a flat battery.

Is a natruropath one who works in the field of holistic health? One doctor did mention something along the lines regarding going the route of a more "natural" approach. But, he wasn't in the position to watch my progress or see how I was being effected. A chief concern would be some of the "natural" treatments out there would need to be overseen by a professional in the medical field just as it were a regular medicine...and currently it's not something the medical community as a whole is doing.

Natural supplements and the like can have the tendency to be harmful if not monitored properly. Especially when medication is taken which can mix and with the supplement and cause unforeseen side-effects. Still, many have benefitted from them while others have not. It's a case by case basis.

Did the naturopath explain how and why some of your basic minerals are being depleted. I know it can happen in various illnesses when the body turns on itself even when the person is ingesting enough of those minerals into the system and those minerals simply don't get digested. Wondering at what point it occurs.