How do you handle it?

[gkneez]

I am so miserableI suffer from FM/CFS and the pain has been increasing steadily all say. It feels like my skin is on fire. My muscles hurt so much, stabbing pains. I can't stand light and sound I have such a migrane. I can barely pick my head off the pillwow to write this. I';m so fuzzy and fogy I can't even think straight or type. It hurts so bad. pain pills are **** nothing to help. how much can a person endure.\? I here crying i feel so bad. I can hardly functoin.My brain is screaming im in so much pain. I hrt so much.

[suzaroo2]

i feel kinda nerdy being on a blog, but i've been dealing with this stupid pain for so long and to know that i'm not the only one--is so great! my parents don't understand it and try to down play it but this place is such an encouragement!

[RNRita]

I am having a bad neck day, today.  I guess I figured out why ibuprofen doesn't help.....not inflammatory.  Why didn't I think of that?  I feel stupid now, too.  lol  I can't take pain meds and am pretty depressed.  I feel like crying a few times a day and sometimes letting it out helps, but more often, it doesn't so I am trying to hold back.  I have NO idea what I'm going to do if it gets worse because docs around here don't believe me and the ones that do get frustrated easily because I have trouble taking meds.  I guess I'll do the research on my own.

[gkneez]

My Dr. has prescribed Lyrica. It has helped quite a lot. My pain is fairly manageable with it. Because I have CFS also my Dr. prescribed Adderall XR. Now this really helps me get through the day of teaching. I am a single mom and I HAVE to keep working. So with these 2 drugs I am managing to manage?

[Joy697]

Dealing with Fibro and CFS is the hardest thing I've ever done in my life!  I had to retire from a job that I loved because of it.  Those of us on this blog totally get what you're talking about.  I can usually tell if I'm having a full-blown episode the minute I wake up.  Other times, it just hits me out of the blue.  I have pain and fatigue all the time, but some times are worse than others (as in full-blown).  As you already know, there's no "pushing it out of your mind".  I suggest that you be kind to yourself and if you feel awful, lie down, rest, and don't feel guilty about it.  I hope you have a doctor who understands and believes there IS such a thing as fibro.  You obviously need some type of prescription pain medication.  None of it that I've tried takes away the pain completely, but see if your doctor will prescribe one that will at least take away some of the pain so you can function.  After I had been on pain med for about a year, I told my doc that I didn't want to be "addicted" to it.  He very kindly told me that having constant pain can do all sorts of bad things to my body, and that if I was ever well again, he would help me get off the pain med.  He also said that I shouldn't think of it like I was a drug addict.  I took him at his word and his advice made me think differently about it.  I don't take it because I want it; I take it because I need it.  Ask your doctor for something.  You need relief!
I pray blessings and healing to you.
Joyce

[VaBreeze]

I'm so happy that you posted too.  When I joined MH I had FMS (likely CFS as well) for so many years.  When it began they called it fibrositis.  Thirty years ago there was nothing to be found about it.  When all the other symptoms began I had no idea why I was sick all of the time (with very odd medical problems).  Now we have the internet and many more resources for defining illness.  I have learned so much more about these illnesses and their cause since joining this forum.  There are many 'snake oil salesmen' out there who will prey on those who are sick.  We rely strongly upon members actual experience with treatments or physicians, not just words promoting products.  

I hope you enjoy the information we have here.  You can also google Whittemore Peterson Institute, who are researching FMS/CFIDS and others as neuroimmune disease.  It's quite interesting.  

Take care and if you have any questions, don't hesitate to ask.  

Breeze

[gkneez]

You guys are great here. I am so glad I posted. I'm doing better today but of course better is still in pain for us. I am a newbie at FM/CFS and I have a lot to learn about it. Please keep helping me learn.

[VaBreeze]

Aleve usually will not help with because it is doesn't cause inflammation.  If you check out the Health Pages we have there are several alternative treatments that may help you.  I am using colloid silver (see my journal on profile page) and am having great results.  PlateletGal and many others are on different protocols and they are helping.  

Research done by Dr. Garth Nicoloson and others show that those with FMS/CFIDS have multiple infections (more about this is in the Health Pages as well).  Medications being prescribed at this time only treat the symptoms of FMS, not the cause.  You can do the alternative treatments in your own home.  If you have any other medical condition, it would be best to check with your physician before starting one.

I hope this helps and we do understand what you are going through.  Take care.  

[Wants2SeeClearly_09]

Hi I just wanted to say hey to everyone, and I have had fibro for almost two years. That I actually know of, I just got diagnosed about two years ago, it took along while for that to happen and alot of pain. I do  have cymbalta, anxiety med, and vicodin prescribed for the FM, and PTSD. I have recently just been thinking maybe I dont need the vicodin, they have become very much like a need, and I dont like the withdraw from them. I havent been on them since the begining of June, and I am in so much pain omg. I keep wanting to call my PCP to get an appt,I just dont know what to do, I take  Aleve also but it does nothing. I do sometimes use my wii fit and excerise, on my good days, bc I cant afford the physical therapy..so..Its a hard thing to handle, but know that you are not alone, and have support. Just try and take it one day at a time...hugs to you :)

[kiddthekatt]

  I have to agree with the other posters, although it is one of the hardest things you're going to face, you have to fight back. When I was diagnosed 2 years ago, I could barely get out of bed, but I have a 14 year old grandson who depends on me and his Papa and I have to put his well being before mine. Don't get me wrong, my health and well being is also very important, I choice to take this child as a baby of 3 days old and to me, his well being over rides anything else.

   At first it was so dam hard to combine everything in my life with FM, but you just keep plugging away. The most important thing to do is to find a dedicated doctor or doctors who believe that Fibro is a disease. And finding the right medications or treatment for you. But when you go into a flare like you are having now, I would suggest going to the ER, they can help you.

   Like Bill was saying the depression was horrible, and after my doctor put me on Zoloft, I began to be able to think more clearly. I started Savella 6 days ago and I already feel so much better. I pray that I continue to feel better and better. Just remember, you are not alone and we are here for you. Take care.

gentle hugs
Angel

[kitonthemoon]

One thing I've learned since 15 yrs ago of dealing with stabbing pain, burning pain, and just Pains is trying not to let it taking me down with my illnesses....if I do, my illnesses defeated me, what's left?  and I try very hard to be mindful of the fact, my negative emotions surely have a negative impact on my pains.  It goes on a very vicious cycle. Billgonz1 is absolutely right about that.

Please know that you are among people who understand what it is like to be in pain 24/7, 365 days.  Don't feel bad about crying, or wanting to scream....we are only human.  It is better to let our emotions out, before it eats us up inside and explode. Sending you lots gentle huggies and hope you have a less pain day.

Kit

[VaBreeze]

Here are two links to other posts that we have had regarding what others do to help with the pain and treatments.  We do know it's painful and can sympathize with you.  It isn't easy, but we are all here trying to support one another with these illnesses.  Hope you feel better soon.

http://www.medhelp.org/posts/Fibromyalgia---CFS/how-do-you-keep-from-totally-freaking-out/show/979196

http://www.medhelp.org/posts/Fibromyalgia---CFS/What-do-you-do/show/956733

[billgonz1]

I had 4 back surgerys along with Fibro . The pain gets so bad it burns They really messed my nerves up . Even effecting my bladder . I'm taking oxycodone . But it does not touch the Fibro . I am trying to learn to live in the Now . I'm trying to not focus on the pain . And doing meditation . It doesn't really help the pain . But i feel less hopeless . I also had to go on antidepressants To keep me out of depression . I was on my back and wheel chair for two years . I had a psycotic break for 10 days . I thought i was on fire. You may have to go to hospital to get good diagnoses . If you can't handle it at home you need help . The depression can get profound and just as bad as pain . Will also make things worse . Be proactive get to a doctor soon . I really feel for you. Gentle hugs Bill