Do any medications help? I'm constantly fatigued and have burning and redness and also sore spots in my muscles. Joint pain comes and goes, but it hasn't acted up.

Rheumatolgist prescribed me an immune suppressant (the anti-malaria drug); I took it for a few months and got scared because of the side effect of going blind. Getting your eyes checked twice a year won't necessarily prevent that. I just didn't think it was worth the risk. One Rheumatologist told me it would help w/only the joint pain and swelling, but another told me it would help with fatigue too. So I though of reconsidering, but who do I believe?

Prednisone made me feel great--got energy and improved my mood, but they are so damaging..i only stay on them for 2 weeks here and there when I get a flare up.

I'm back to taking stimulants again. I just don't know what else to take. I don't think I want to stay on them for more than 3 months though.

I take the antidepressant Cymbalta (duloxetine) 60 mg daily for my fibromyalgia pain. It helps a lot. I still have lots of fatigue and sleep problems, though. Pristiq and high-dose Effexor ER (venlafaxine) (375 mg/day) also work.

I'm not sure what autoimmune disease you have. I have a type of autoimmune arthritis and have taken sulfasalazine, methotrexate, Enbrel, and Humira for it. I take Humira now. It works the best of any that I have taken, but it is very expensive. I'm not sure what country you're in, so I don't know if it's available to you or if it would work for the condition you have.

If you are getting joint swelling, please try to get a medication to stop this. You may already know this, but the swollen joint can stretch the ligaments and tendons around it then the joint won't function properly, even after the swelling goes down.

I found that my depression responded better to antidepressants after I got my autoimmune disease under control, too.

[likewater]

Hi. I take gabapentin and wellbutrin, Prozac, Elavil and naproxen. They haven't found an auto immune cause but they are looking into that bc of my neuralgia. I'm just tired all the time and have burning pain in my joints all the time. I wonder what I'm here for. I haven't even been able to work lately and I catch every infection and cold under the sun. When I was little I thought drs found out what you had and made you better or you died. (I knew about death early on as my dad had pancreatic cancer)I never knew there was this third option. You live but can't really go out with friends or work and you're in constant pain and everyone thinks you're a weirdo hypochondriac. Yep, never imagined that happened to people, especially not NICE people. Why couldn't that just happen to terribly EVIL people. That would make more sense.

Anyway I digress. I am reading a book called the WHALs protocol. It's about a Dr with MS who changed her diet and went from being in a lying down wheelchair to being able to hike and ride a bike and everything again. I'm gonna try that diet. It can't hurt to eat healthier.

[AnomalousCarrotCake]

My rheumatologist diagnosed me with fibro and prescribed compounded low dose naltrexone (LDN) for me. It has very few side effects -- most of which pass in the first 2-3 weeks.

LDN has been studied by Stanford University for use specifically for fibromyalgia. Unless you must be on opiate pain meds for some reason, you may want to do some research and talk to a doctor about whether LDN may be for you.

Anomalous,

How much does the naltrexone help your fibro pain? Does it help any with fatigue and sleep problems?

Have you tried SNRI meds like Effexor or Cymbalta or Pristiq?

I've been on either Effexor or Cymbalta for the past 12 years. They help a lot with the pain but I'm still left with a huge amount of fatigue and sleep problems.

Thanks!

[AnomalousCarrotCake]

Originally Posted by jo_thorne

Anomalous,

How much does the naltrexone help your fibro pain? Does it help any with fatigue and sleep problems?

Have you tried SNRI meds like Effexor or Cymbalta or Pristiq?

I've been on either Effexor or Cymbalta for the past 12 years. They help a lot with the pain but I'm still left with a huge amount of fatigue and sleep problems.

Thanks!

LDN helped me with pain far more than Vicodin, Tramadol, and gabapentin (Neurontin), without the gnarly side effects. I have not tried Effexor, Cymbalta, or Pristiq.

I went from being in bed with pain most of the time to being able to get up and do some light tasks for 5-15 minutes within a few days of starting LDN.

My sleep schedule used to be shifted to a very late start, with night-time pain -- with LDN the first two weeks or so I had insomnia, but then I began falling asleep within 20 minutes of hitting the pillow (never before, by the way -- it would take me 90 minutes to fall asleep after I laid down).

Fatigue improved somewhat. But I'm not the best person to use as a case study for this, because I've also been diagnosed with CFS/ME (now SEID?) and that may complicate the picture for folks with purely fibro diagnosis.

I'm taking a short break from LDN right now, so as to see what my baseline pain is without it. But also because some people (like me) periodically have to alter their dosing schedule, especially if they have a thyroid condition. Some people take LDN every night (it's advised nighttime only, usually), some every other night, and some even less often than that. It depends on the individual.

I've been on thyroid meds for years, and there's some evidence that LDN can help 'correct' autoimmune conditions to some degree including hypothyroidism. Which means one has to start taking less thyroid medication or they will end up overmedicating themselves with thyroid meds (Synthroid, Cyotmel, Armour, others). I began to feel restless and hyper after a year of taking LDN with no issues and only improvement, and found out this is what it might be.

Your caveats, if you decide to try this:

- LDN has to be made by a compound pharmacy. It's not the sort of thing you can just pick up at Walgreen's, CVS, etc.
- LDN is not something all rheumatologists are willing to prescribe because it is being used off-label for treating fibromyalgia.
- LDN has to be individually adjusted, even if clinical studies state to use 4.5 mg a night. It may be less for you (it's rarely more). You may need to play with adjusting it more than once.
- You are best to start very slow and increase dose over time. 1.0 mg to start for one week, then 1.5 mg for two weeks, then try moving to 2.0... Side effects are often less dramatic if done this way.
- You have to quit all opiate medications for at least 2 weeks, preferably a month, before starting LDN. Opiates compete for the same receptors in neurons in the brain that LDN uses, and side effects are more pronounced if you are still using opiates close to starting LDN.
- There are a few drugs which cannot be used alongside LDN. Talk to your prescribing doctor about what you take, but also look up "naltrexone" and contraindications online, too.
- If you need surgery or got injured and go to the ER, you need a bracelet or to tell someone you're on LDN. Opiate pain meds may be less effective the same day you are treated - you may need to try different pain meds or adjust dosing.
- It helps a lot of people with fibromyalgia but it helps some people more than others. As usual, your mileage may vary.

The positives:

- It's usually pretty cheap to buy compared to other meds for fibromyalgia.
- It's been studied in observational studies on fibromyalgia at Stanford University, and has been shown to reduce pain by at least 50% in a large portion of patients in a short period of time.
- It has low side effect profile. Usually insomnia, vivid dreams, and a few people get some nausea in the first 2 weeks of use. These usually go away with time.
- Citing its low risk of side effects, especially compared to other treatments, a number of doctors do not hesitate to prescribe it.
- Usually, people have no problem taking antidepressants alongside of them if needed -- but it's best to check with a doctor about that before starting.
- There are a number of forums online where people discuss taking LDN -- it's not that rare, so you can compare notes with other people taking it including those with fibromyalgia.
- It doesn't tend to give you a hung over feeling like opiates do. Nor do many people experience dry mouth and constipation on it, like opiates and antidepressants tend to do.
- Some people experience a lift in mood and less fatigue along with less pain.

If you have more questions, feel free to ask -- you can also PM me if you like.