100 lb. Club - Cuz I need more !@#$%& problems!

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02-01-2010, 11:13 PM
Okay, so I've had pretty bad pain for years now. I always assumed it was fibromyalgia as my mom has it and our pain is similar. Now that I'm working, the pain is so much worse. standing all day=blow.

As it turns out I do have fibromyalgia. (yes I posted over in the dieting with obstacles forum ;) ) and maybe also myositis which causes your immune system to attack otherwise healthy muscles and causes pain and inflamation.

She says it looks like I have that, but I don't WANT to have it, cuz over time I guess it can cause your heart and lungs to fail....???? AUGH.

I'm so sad right now.

I WENT hoping to get something for the pain, but she refused me pain meds saying that giving me pain meds would 'take the edge off' but ultimately be a 'disservice' to me.

I cried when she said that. work is so hard. at least she gave me a note saying that i could sit at work.


02-01-2010, 11:44 PM
Well I don't know anything about fibromyalgia but I hope the sitting at work will help and give you a little relief.

02-02-2010, 12:29 AM
Personally, I would suggest getting a second opinion from a doctor who understand the conditions better. Ideally a specialist in the field (often a rheumatologist, but neurologists are gaining ground).

If there's a fibromyalgia and/or chronic fatigue support group in your area, attend at least a few meetings if you can. You'll get a lot of insight into the disorder, and in talking to the other members you'll get a lot of feedback on the local experts and who is knowledgeable and compassionate, and who is not.

Medications, including pain medications can be an important part of getting symptoms under control. Although the most helpful medications often aren't pain medications.

My neurologist understands fibro better than any doctor I've ever met, and he told me that I'd probably still be working if I'd gotten treatment (including medications) years earlier.

I assumed the pain was inevitable and untreatable, and endured it for decades (with no diagnosis). It wasn't until extreme fatigue became constant that I aggressively sought a diagnosis and treatment. The fatigue was so severe I was sleeping every moment I wasn't working (and fighting to stay awake when I was at work - having to put more effort into staying awake than doing the job).

For many people fibromyalgia may be primarily a sleep disorder. A sleep study will determine whether or not you're getting the right kind of sleep. Many people with fibromyalgia do not spend enough time in restorative stages of sleep. My last sleep study shows that I spend almost no time in restorative sleep. When you deprive animals of this kind of sleep they die of immune disfunction. It may be no coincidence that I've been diagnosed with autoimmune disease).

I take amitriptylene and cyclobenzaprine at bedtime to increase the likelihood and duration of deep sleep. It controls my symptoms better than the pain medication I'm prescribed (tramadol).

The rheumatologist who spoke at our local fibromyalgia support group said that most of her fibro patients need some type of prescription medication to improve sleep quality/quantity than require pain medications. She always treats with sleep meds first, and then adds pain meds only if the sleep meds don't improve symptoms enough. She said that about half her fibro patients do not need prescription pain meds on a regular basis (some she prescribes pain meds only for severe flares).

If you do get a doctor to prescribe pain medications, make sure it's the right kind of pain medication. NSAIDS may or may not help, and there are potential side effects and risks associated with long term use. Narcotic pain medications often aren't very helpful for fibro, especially for women. I found tramadol (Ultram) to be extremely effective for me, while the (supposedly stronger) darvocet did absolutely nothing for the pain.

Tramadol can cause physical dependence though, so you have to wean off it, if you're using it as a maintenance (daily) drug. This isn't the same as true addiction. Using tramadol as prescribed, it doesn't cause the "high" that narcotics can.

My rheumatologist and neurologist supported pain medication use, telling me that if the pain medication allowed me to exercise more (which it does) then it made sense.

02-02-2010, 12:41 AM
Why on earth will she not give you medication to take away the PAIN? How is that doing you a disservice? So you should be in pain all day? I'd call back and INSIST on pain medication- you should have some relief at least!

02-02-2010, 01:20 AM
thanks you guys.

to address some of your points kaplods, I'm going to the pain center, so they can help me further hopefully.

also I can't take a lot of medications because I"m bipolar. no ultram for me. no neurontin, (It makes me stupid I used to take it for other issues) and it also doesn't help the pain, lyrica, it's similar so I'm kind of anti it, and th eidea of living in a drug induced fog......doesn't appeal to me. befor eI found the right med for my bipolar I lived in a fog for 5 years.


no more.

I was given percocet for my tooth. OMG IT MADE THE PAIN DISAPPEAR! I only wanted it for work, which is only 2.5 days a week. she refused.

I sleep good, but it may not be restorative or whatever as I"m often tired, I CAN stay awake, but I can basically lay down and fall asleep at any time of day. Maybe I will do a sleep study...


02-02-2010, 01:27 AM
So sorry you are going through this. My mom has it and I know how hard it can be. Hang in there. I hope you find the help you need, painfree and able to work.

02-02-2010, 07:20 AM
Wow, I can't imagine the pain you must be in. And I thought *I* had it rough with arthritis in my spine. I'm so sorry you're going through this.

Do other methods of pain control help? Things like heat or ice, a soak in the tub, or mild stretches? All of these things help me. What about a muscle relaxant? (Asked as a question, because I know nothing about your condition.)

I also don't know your beliefs, if any, but I said a prayer for you. :hug:

02-02-2010, 07:41 AM
Sorry to hear this ,Lottie. Kaplods seem to be on the right track. Hope you feel better soon !

02-02-2010, 08:05 AM
Lottie....I am so sad to hear this. Yes, please speak with a specialist (or two). I hope they can find a way for you to live with no pain.


02-02-2010, 12:24 PM
:hug: sorry to hear it, Lottie

02-02-2010, 03:25 PM
Lottie, My heart goes out to you. :hug: I hope you get the best help at the pain center.

02-02-2010, 03:36 PM
sorry you are going through this- hope the pain center and other resources will get you the help you need!

02-02-2010, 03:39 PM
You may be in a bit of a jam if you can't take any of the non-narcotic pain medications and some of the other drugs used to treat fibro. Amitriptyline and cyclobenzoprine are both neurotransmitter-affecting drugs, so they may or may not be feasible for you.

Darvocet and tramadol are only somewhat related to opiates. More doctors are willing to prescribe darvocet and tramadol than the "true" opiates like percocet, because of the risks and long term side effects and abuse potential of opiate drugs (not to mention the paperwork they have to fill out when prescribing true narcotic meds).

My husband is in that boat. Darvocet does not control his pain very well, but his doctors tell him he's "too young" to be taking a true opiate. One of the problem with the opiates is that habituation occurs relatively rapidly, meaning that if you use them on a regular basis, they become ineffective fairly quickly and you then need a higher dose or a stronger opiate to control the pain.

The pain of fibromyalgia unfortunately (in my experience, and from what I've heard from doctors and patients in my fibro support group) habituates to narcotic pain medications much more quicky than other pain conditions. So percocet a couple days a week may work for you now, but in six months it probably won't. You'll need more or need a stronger opiate, which will also, in time, stop working for you.

Doctors are reluctant to go down that path. It's a bit like use of antibiotics, the risk of becoming immune to the drugs has to be weighed with the benefits of using them.

If your doctor referred you to the pain center, I feel a little better about her knowledge of fibro (or her willingness to admit she doesn't know fibro). Pain center doctors are a lot better (in general) than general practitioners at working with their patients to find the right meds and treatments.

In my experience, the general practitioners often are prone to either underprescribing or overprescribing pain meds. Underprescribing is more common, because overprescribing can get doctors in a lot of trouble, so some are very reluctant to prescribe adequate pain medication. However, overprescribing is just as bad, and I'm not primarily talking about the risk of abuse or dependence. I'm mostly talking about doctors prescribing a pain drug that is too strong and/or too soon. It can leave you with no relief at all because you built up a tolerance to too many of the drugs too soon.

That's the reason my husband is in such a bind. He's 39 years old, and his doctors don't want him to be 50 years old and on morphine (and in kidney failure, as a result) because vicodin and oxycontin have stopped working.

Most doctors get a lot less training in chronic pain management than you would expect (especially as pain is a symptom of so many of the disorders they are treating). The pain clinic doctors will have a lot more experience.

Good luck.

02-02-2010, 05:20 PM
So sorry you're going through this Lottie! Hopefully a second opinion and the visit to the pain center will provide you with some more answers and hope.

02-03-2010, 12:34 AM
thanks everyone,

kaplods, I can't take ultram, it's got something to do with seretonin she said, so I can't take it cuz of my bipolar. and amitriptaline makes me severely manic.

I'm not sure what i"ll do.

aleve and sitting at work for half the day (spread out throughout the day) made the day tolerable.

thanks again everyone.