Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

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Hopelessness and "Broken"

mlphipps1991
mlphipps1991
I have dealt with chronic pain ever since I was a young teenager. I currently am 21 and was diagnosed with this disorder on Friday by a neurologist/rheumatologist. I had been waiting such a long time for this appointment to come and the doctor did nothing to help me. I have seen my family practioner on my campus but she won't touch any of my pain issues with a 10 feet pole. To be honest, I have had to resort to taking pain medicine I was prescribed originally for my Ulcerative Colitis/IBS years ago but receiving it illegally. I do not go to drug dealers- I go to a family member who's a former medical professional that is prescribed the same medicine. I hate this feeling and I've been searching for other options- legal options. I am not a criminal but the medical society has made me feel that way. But if I tell a doctor what I know what helps, I'd be preseved as a drug seeker.With being excited for this appointment, I thought I would finally receive something for pain to make my life functional.

Instead, I received a "sorry I cannot do anything since 'all of' the meds for it are too similar to your medicine for your OCD. Sorry for your back luck and all. Lose some weight and see if that helps." It wasn't that blatant (although it is close) but it made me feel like absolute worthlessness. Here it is, I finally get into a specialist, and there isn't any hope.

I feel so hopeless. After my appointment, I cried, started having a panic attack, and made myself take a nap. I was/am so depressed by the feeling of these chains that I feel like I will never be free.

Here it is, past three in the morning, and I am unable to focus on my school work due to the pain and depression that has hit me within the past two days. Any suggestions of where to go from here? I am on trazadone already for my sleeping problems and am allergic to ultram/tramadol. Narcotics help- that's the blunt, sad truth.
deleted_user
deleted_user
miphipps...I have been in your shoes and it's not easy. Here is what I did. I found a clinic that doesn't deal with pain management. My FMS is being treated now. I know it sounds like a crazy thing to do but it's what I had to do because I had seen so many doctors about my spinal condition (before my diagnosis of FMS) trying to find some relief. I don't know where you're located but that is what I would try. Keep your head up, there are doctors out there that will listen, they are just hard to find.

Right now, what I would suggest to help with your focus is deep breathing exercises and meditation. I know it sounds weird but it does help. I can help you with that if you'd like. The biggest thing is don't loose hope! There are wonderful people here who can help you. Warm hugs!!
cristledreamz
cristledreamz
the rheumotologist who diagnosed me w/fibro also wouldn't prescribe anything cuz i take psych meds. all that they would do was recommend a med for my psych doc to prescribe and he won't cuz he's not a pain doc. it's frustrating. i hope u find someone who will help u. i'm going to a chiropractor now which is helping quite a bit. least someone said they'd help me.
deleted_user
deleted_user
If you can find the right massage therapist they can help immensely. I have two that I alternate. Can only afford once a month, but it is wonderful. Also I agree with Painfullyme that using relaxation techniques can help. Signing up for a yoga class at your YMCA or local recreation center will teach you breathing and movements to ease your painful areas as well as improve your flexibility. My rheumy has prescribed gabapentin, trazadone and a med for arthritis. My other doc has me on cymbalta. I take info from the one doc and give to the other doc so that both can work together. I guess I have been lucky...then again, maybe it is because I am older and more assertive?
Athenapks
Athenapks
I suggest you talk to a campus counselor, find a local support pain group, search out another doctor. Do online searches.

Looking for help, finding new professionals who believe your problems with pain takes a while.

Only place I know of that believes fibromyaliga sufferer's pain is the Johns Hopkins Pain Clinic. They have doctors, done clinical research into pain. And they have some thing called "Pain Day" - schedule an appointment & they evaluate your pain problems. Get a doctor's, professional's referrals.
deleted_user
deleted_user
What everyone else has been saying, plus:
Look at treatment with a TENS unit - you can buy them online for a reasonable amount.
Look at doing water aerobics/exercise - much easier on the joints - make sure it's a nice warm pool.
Try hot baths with a couple cups of epsom salts in it - muscle relaxant.
Work yourself over to eating more organic, natural and less processed foods - less junk in, less junk out.
Try probiotic/fermented foods that help increase how much nutrition you're actually getting into your system.
Catnip and skullcap are both decent pain killers - find an herbal PDR and check them against your current meds, more for skullcap than catnip. Take the catnip in tea form (everyday pain) or smoke it for extraordinary pain (when the pain meds wouldn't work anyways). Use the skullcap in place of narcotics - it treats the same receptors. Get organic if you can - again, less junk in, less junk out. Hope that helps!
deleted_user
deleted_user
I can relate! Then when they actually put me on narcotics I still have alot of difficulty. Get assertive, find new doc, look at the meds listed here, I have found lyrica and nuerotin to very helpful for all the fibro issues which increase all the other pain we have from other things. Much easier to deal with our other issues when the fibro is under control. I would also ask for an anti-depressent which you probably need anyway and that will let them know that you are serious about this pain and not just looking for narcotis like many docs think! Good luck honey and let us know!
deleted_user
deleted_user
Painfullyme, I read your bio we r similar spine n fibro. Why no pain clinic? I've been trying to get into one for shots. Or anything they want to give me. Ruptured thoracic spine surgery not an option.

Also been doing yoga, little upset I'm not as flexible as I should be. When does pain stop? I'm not pushing it and listening to body, which screams ouch

Mlphipps campus docs won't touch you unless you need a band aid. Go to another doc. My husband says even docs that graduate at the bottom of their class practice medicine. Keep looking. I went to one doc that got me soo rattled I still complain! Good luck!
deleted_user
deleted_user
Honey I feel for you. -Hug-

I am 25 and was diagnosed in the summer and the specialist told me something similar; lose weight, hope it helps, sucks for you, bye. And almost that blunt of terms. I was very blessed to find a psychiatrist and family practitioner that worked together to get me on the right track. But now I need to start over again having moved to a different state.

The best thing to do from here is to not give up. Everyone that responded has given really excellent advice and the only thing I can add is to really try and control your thoughts as best you can. Don't let FMS define you. Accept it as a part of you, but not what makes you. Go slow, give yourself a chance, find your rhythm and listen to your body. It will tell you what it wants/needs. In the throws of a flare up it doesn't always work of course, but for me knowing what I had even if others didn't understand it or empathize, allowed me to know how to control it the best I can.

I hope that helps. I don't mean to sound cliche or anything and I am far from perfect. In fact I am not doing so hot myself right now. I will be praying and thinking of you. Message me if you want or if I can help further. It will be ok. You will find some help, i'm sure of it!
fibrolizzy
fibrolizzy
Hello..I'm so very sorry you're having such a hard time getting the relief you need. It angers me so much that people in legitimate pain have to be put through this!

I agree that an antidepressant will help. I discovered the hard way that not taking it definitely made my pain off the charts. It at least numbs it some. Then I also agree with the others to keep looking for another doctor. Our pain clinics here mainly just do injections, then give you pain meds for the procedure. I'm fortunate to have a GP who is understanding about my pain.

Keep looking...don't give up!
skinnybinny
skinnybinny
Rheumotologists generally just diagnose but rarely treat these days so that is not uncommon. Mine gave me an initial prescription of Tramadol (which didn't help me at all) and sent me back to my primary care doc for treatment.

I think only a very small percentage of doctors will prescribe narcotics these days because the FDA has made the paperwork a nightmare. Pain clinics are supposed to pick up the slack and help patients in chronic pain but if it's Fibro pain then many won't help you.

It took me 10 yrs of pain before I found a doctor to prescribe narcotics and give me a life back. I hope it won't take that long for you. I had to be assertive.
deleted_user
deleted_user
Reading all this has given me a little hope. I did get three different meds (Cymbalta, Lyrica and Savella) NOTHING worked they all had side affects and that was not good. Adding more problems was not my idea of help. Now I am going to try going to the pool to exercise, just walking hurts so I am hoping the water will help me move easier. I have struggled with this not knowing what I had. AND now I know what it is, it seems just as hard. I read so much and get more lost and confused. I am getting more depressed, having anxiety issues and my sleep apnea doesn't help. I try not to stress but that seems to be my everyday issue.
I hope talking and reading every ones ideas will help me feel less alone with this. Thanks for listening.
deleted_user
deleted_user
smoking catnip now that I had never heard of
I broke my back last year thats was introduced to this
I take Lyrica and Prisq I get no other pain medication
deleted_user
deleted_user
My husband used it as a tea for more general relief, was in a bad way when we didn't have insurance and knew that smoking it would get it into his system faster and in a more concentrated fashion (stomach acids don't destroy as many of the compounds). Works great! Like anything, use moderation, and standard disclaimer about this not being medical advice, yada yada yada - most medical advice the past few years hasn't done anything for me anyways ;)
deleted_user
deleted_user
I remember how frustrated I was when I was told if you lose weight your pain will ease. I lost 65 lbs. but pain stayed the same. So finally I was sent to a Pain clinic, it was like going to a zoo. All they wanted to do was experiment with this and that. They had no one at the time who could say this will work. I remember contacting a doctor at aPain Clinic in the states, he told me by no means have the treatment they suggested. I wish I could remember his name. OH well the point is keep looking, and trying, don't give up. We are all hear for you too. Maybe we haven't gone through all the same things as each other but we all have felt, fear, pain, frustration, so don't give up. Keep asking for help, keep telling your story, for one day some one will be able to help you. Until then we are all hear to support you. thanks isabee