fibromyalgia

[telecom_goddess]

I know some of you suffer from this. How did you discover you had it? Did you suspect you had and got it confirmed or what? I know a lot of doctors don't even consider it a real physical disorder.

I just wonder cause I have days where I'm in constant pain everywhere and days where I'm doing ok...but it's happening more often than not. I brought it up to my dr who basically shoo'd the idea away and explained my pain on meds I was taking.

[Shangri-laschild]

Try looking at the symptom lists online. I had been noticing a weird bunch of symptoms and when I talked to my doctor about it, he suggested fibromyalgia. I had my doubts but once I looked at the symptom lists online, it sort of clicked in my head. It's more than just the pain (though that is a predominant part) and the other common symptoms might help you decide if it sounds like it is accurate to you.

[Mishi]

Well, I had various symptoms for 2 years, worsening over that time. Went from doctor to doctor and had numerous blood tests. Finally got a referral to a Paediatrician (I was 14), then sent to a hospital for a week for assessments by a Rhumatologist, a Paediatrician, an Occupational Therapist, a Physiotherapist, a short one with a Psychologist and an Immunologist. Many X-rays, Cat Scans and Doppler Imaging (to be sure I didn't have Marfans) later, I was finally diagnosed with Benign Joint Hypermobility Syndrome and Chronic Musculoskeletal Pain Syndrome. Physio didn't work and I was told there was nothing more that they could do for me.

I got sick of being sick all the time and slowly started exercising to almost my limit x 1 day, a little bit less the next and taking a break on the third day, then starting over again. Cut out all foods that contained solanine, and let me tell you, potato flour seems to be in everything! Only OTC pain relief, which did nothing so I eventually gave up on that. Found out later that people with HMS (as it's now known) tend to be resistant to painkillers.

It wasn't until I was talking to Seshat that I found out that my second condition is also known as Fibromyalgia. Some days really suck, but as long as I stay on top of my exercise regime and don't overload on foods that have solanine in them, my pain levels are tolerable. I still feel like I have a bad case of the flu all day everyday, but I don't want to miss out on fun things just because I feel like crap.

[Cazzi]

Mishi, thanks for posting this and telecom_goddess for starting the thread
I also have HMS and from time to time have suffered bouts of "all over"pain which seemed to fit the bill of "chronic widespread pain disorder". The last 8-12 months though I've been getting those symptoms more & more often and feel like my energy is draining away along with my strength, which is odd as I go to the gym regularly but have been finding the cardio workouts harder & harder to do.

When I was first diagnosed with the HMS I was also examined for other things & at the time was told I had about half the markers that point to fibromyalgia, but that wasn't anything to worry about. I had been debating asking my GP next time I see her to refer me back to the specialist, now I think it may be a good idea, just to put my mind at rest!

Its interesting to learn about the potatoes, i do eat a lot of those, and use potato flour as one of a few substitutes for wheat as I also have coeliacs. I think I'll start taking notes on how I feel after eating them. Thinking about it now though, a friend I don't see very often was diagnosed with fibromyalgia a couple of years ago & I remember her saying she felt bad after eating potatoes too.

Thanks, I love this forum & its helpful members

[Seshat]

Oddly, potatoes are one of my staple foods. However, each fibro patient is different, which is part of what drives the researchers crazy!

Twenty-odd years ago I was diagnosed with chronic fatigue syndrome. I may or may not still have it - it's a diagnosis of exclusion, and if you have fibro, you can't definitively say that the CFS-like symptoms aren't the fibro.

Fibromyalgia, however, has a diagnostic test.

I seemed to recover from the CFS. YAY! But I was still depressed, and still in pain - just not the 'sick and tired' characteristic of CFS. Or at least, not as strongly and not as continuously.

I put it down to depression, and tried to find a treatment for that, that worked. Anna finally asked me "When you say 'you just want the pain to end', do you mean mental, physical or both?"

Then she asked me to describe the pain I was in, right at that specific instant. And convinced me she MEANT it, meant for me to be clear, and to say everything, even things I thought were insignificant.

Well, she stopped me partway, and told me we were going to the doctor the very next day. The only other people she knew in that much physical pain were people who'd run a marathon with insufficient training.

Anyway, the doctor's reaction was similar to Anna's. He reached for his referral pad before I'd finished describing the pain, and sent me to a pain specialist.

The pain specialist listened. He did let me finished, asked some probing questions, asked about my other diagnoses and how they'd been reached. Then he had me lie on his examination table while he found very specific locations, and applied a very specific amount of pressure to each of them.

If you respond with pain to <however many> of those points, you have fibromyalgia. (If you don't, you still might. It's not a perfect test, unfortunately, but it's the best they had last time I checked.)

I responded to almost all. Now .. 'responded' is a very gentle word. The first time, I was unprepared for what he was doing - and he got a severe spasm, and a scream followed by sobbing. After that, I asked if I could hold Anna's hand. He got more controlled pain responses after that - so it didn't sound like he was torturing someone in there.

Well, in a sense he was.


My current treatment regime.
Diet, dictated by PCOS/insulin resistance and GERD. Given both of those, my medical staff have just said 'try to eat nutritiously and pay attention to what foods make you feel worse'.

Exercise, but extremely careful and controlled exercise. On a bad day, my exercise is struggling to the mailbox and back using my walker. On a REALLY bad day, my exercise might be resistance movements in bed with Dancer or Anna providing a resistance for me to push against.

On a normal-to-good day, I walk the dog at least partway around the block. All the way around if I can do it without adding unduly to the pain.

(What is 'unduly'? Something only experience can tell you, unfortunately. If you have a 'pain crash' the next day, you did too much. Scale back about 20%. If you get through a week without a pain crash, try adding about 20% to next week's exercises.)

I try to get to a hydrotherapy pool once or twice a week, where I do a gentle set of hydrotherapy exercises. My set was prescribed for me, but it's simply a 'work each muscle group' set. Any book of exercises or any fitness instructor or physiotherapist can probably give you a suitable set of exercises. Just ignore the number of repetitions they recommend, and start with three of each.
If three of each causes a crash, drop to two of each, or one of each, or one of every other exercise. However slowly you need to start.

I also have a weight training set of exercises. Once again, it's a 'work each major muscle group' set, but with no situps, and the pushups start out as 'against a wall'. You then work the pushups against a high bench, then a low bench, before ever trying them on the ground.
Do them with no weights, using your own body as enough weight to make a resistance. Then use just the bars. Then start adding weights to the bars. Whenever you add a level of weight, drop the number of repetitions.

Continue increasing your exercise until one of two things happen:
- your body seems unable to continue increasing without a pain crash.
- you become capable of doing enough things that you want to do/your quality of life has improved to a level you're comfortable with.

Once either of those conditions has occurred, make a note of the exercises and repetitions and weights. That's your maintenance level. Stop increasing, don't decrease unless you have to. Keep it up, though. If you stop, your body will very quickly let you know - because everything that had become easy will become hard.

The reason for exercise as a treatment for fibromyalgia is this:
Pain leads to lack of movement.
Lack of movement leads to muscle atrophy.
Muscle atrophy leads to the Dark Side.

No, wait....

Muscle atrophy makes movements hurt more.
This means you have more pain.
Which means you move even less.
Which means your muscles atrophy even more.
Which means pain for even easier things....

The good bit is that the same spiral can be travelled upwards. Move more, and muscle builds, and activities become less painful, which means you can move more, which means....

But you MUST MUST MUST MUST MUST start VERY SLOWLY. Pain crashes will hurt you, both physically and psychologically. Every pain crash makes you less willing to exercise (or it does me), so take it gently.

[crazyofficeclerk]

I had a really bad case of bronchitis that sent me to the emergency room one night after work. When I went to see my GP the next day he prescribed me an antibiotic and cough medicine. Ten days later I was back back because I felt worse than I had when I started. Another round of antibiotics I was back again and saw the nurse practitioner who sent me for an x-ray. That x-ray led to a diagnosis of pleurisy. Two weeks later I was back in tears because I felt horrible, like I had been hit by a bus. She did the test for fibro. My left side was tolerable, but when she pushed on my right foot, I shrieked and came up off the table. Unfortunately, even thought they believe that I have fibro, they won't prescribe anything to me. Some days are better than others though.

[Sapphire Silk]

I had a really bad case of bronchitis that sent me to the emergency room one night after work. When I went to see my GP the next day he prescribed me an antibiotic and cough medicine. Ten days later I was back back because I felt worse than I had when I started. Another round of antibiotics I was back again and saw the nurse practitioner who sent me for an x-ray. That x-ray led to a diagnosis of pleurisy. Two weeks later I was back in tears because I felt horrible, like I had been hit by a bus. She did the test for fibro. My left side was tolerable, but when she pushed on my right foot, I shrieked and came up off the table. Unfortunately, even thought they believe that I have fibro, they won't prescribe anything to me. Some days are better than others though.

Quite frankly, I'm skeptical of most prescription meds used for fibro. Narcotics are of limited value and addictive. NSAIDS help some people, not others. Ditto for Tylenol.

Some people are being placed on anticonvulsants like Lyrica or Cymbalta . . . but both of these meds have a lot of side effects and their long term safety is not well established. I've known people who ended up with permanent tardive dyskinesia from Lyrica.

Seshat has some good suggestions. Regular exercise, diet, avoiding triggers are all good strategies. My sister in law gets deep massage therapy; she swears by it.

But ultimately, each treatment plan is going to be different. Research meds and stick with a provider that takes your concerns seriously.

[Mishi]

One of my friends has a past diagnosis of CFS, with a lot of the same symptoms I have. She swears by acupunture, because it's the only thing that helps relieve some of the pain and pressure in her neck.

[1756GR2]

I had many tests from several doctors over a span of years, was told I had arthritis (tests ruled it out, and it wasn't pain in my joints), severe depression (not), or something that "will go away by itself." A new doctor took the time to listen and diagnose, and I felt SO much better about everything. Still in pain, but felt a lot better overall when I knew what it was.

There are bad days when I'm useless physically and when the fibro fog sets in, and there are good days when I can accomplish something. Those are the days when I overdo because I'm feeling better, and I end up with flares for a while. I don't sleep well so I'm never really rested.

I've been offered antidepressants and other drugs, but I don't see the point (for me) in taking something that at best will cover it up, and not help. (Thanks, Panacea, for mentioning the anti-convulsants. I see the side effects my son sometimes has to endure with his epilepsy meds and I would be extremely cautious about them.)

I'm pleased to see that it's getting better attention now than it had been getting. My understanding is that it's a syndrome, a collection of symptoms, so that there's often a good bit of testing for other things to rule them out before a diagnosis can be confirmed.

[Seshat]

I am on medications:

Regular meds:
Tramadol, as a pure pain reliever.
Epilim and Cymbalta to try to reduce the neurotransmitter effects. (The Cymbalta also helps relieve my depression.)

I'm also on Diabex for the PCOS, and Nexium for GERD, and I take an antihistamine.

Occasional meds:
For breakthrough pain I'm permitted Tramadol, Ibuprofin or paracetemol/aceteminophen (Panadol in Aussieland, Tylenol in USlandia).

I'm also allowed an occasional Valium for disabling anxiety & panic attack prevention.


I and my family have made a conscious choice to aim for quality of life, not quantity of life. Lifestyle changes alone weren't lifting me out of suicidal levels of pain and depression, so for us possible long-term body damage is an acceptable risk: without the drugs, we had a real risk that I would someday not be here at all.

[crazyofficeclerk]

I take an NSAID when the pain is so bad I can't stand it, but I know several people who have gone on a prescription and are very happy. Me, not so much. I take a swim class two days a week that is for arthritis and it works wonders. I also tend to over do on days that I feel good and then crash. Recently, I have had to work 45-50 hours a week at work and I was miserable. I still can't seem to feel better. I'm sure that I've done some damage but hopefully I can slow down now.

[Seshat]

I also tend to over do on days that I feel good and then crash.

That's a dangerous pattern.

Here's what I've learned to do: work out the maximum I can do without a crash on a 'normal' day. On a good day, do no more than that.

I have to keep reminding myself that I'm giving my body the extra 'cope' (resources, energy) that the good day allows, so that it can heal. Of course, there's nothing wrong with spending that extra 'cope' time in the garden, reading a good book, listening to birds and smelling flowers. Or something else pleasant but not stressful.

[Mishi]

Okay, I might be waaay out of line here, but despite the fact that most people with fibromyalgia respond differently to various inputs, the things that make a longterm difference to pain levels and quality of life are exercise and lifestyle changes.

Prescription narcotics are not the answer. Cymbalta helps with the 'brain fireworks', but can have all sorts of nasty side effects. There is no magic pill that will make it go away. I wish there was, but there isn't. If you take painkillers without any other changes, all that will happen is that you will build up a resistance to the drugs, will probably develop an addiction and the pain will come back.

Find a doctor that is willing to work with you, get referrals to various specialists and sort out a long term health plan that works for you. Painkillers should only be a very small part of the overall picture. It might take some time to figure it all out, but it's worth it in the long run.

I'm now at just over 11 years since the beginning of my symptoms. Even though I had to figure most of it out for myself, my pain levels are tolerable. I know to rest when I need to, I know the symptoms that show I'm about to experience a flare-up (My friends pick up on my body language even when I insist that I'm fine and don't need help), and I'm looking at returning to part time work when my girls are at school. I know that keeping my weight around 50-55kg helps with my pain levels, doctor has okay'd it even though it means I'm on the light side for my height (165cm). I missed out on so much because I was sick during my teenage years, I'm not willing to miss out on anything else if I can help it. I have it easier than most though, as I'm not (currently) depressed. Good luck!

[Seshat]

Mishi, you're not out of line at all. And I totally agree with you.

Yes, I use drugs as part of my management of my fibro, but only because diet and lifestyle alone didn't lift me out of suicidal. As things improve, we'll be dropping the drugs.

Until the researchers can identify what's going on to the point that they can say 'Oh! it's a deficiency in neurotransmitter X' or 'the receptors for Y are failing' or 'there's a change in brain structure Z', the use of drugs in fibro treatment is guesswork and symptom management.

[telecom_goddess]

Wow I didn't know this took off so well I think I need to start with finding the symptom list and then maybe a dr that is not going to shoo away the possibility that it might be fibromyalgia and actually explore the idea.

I'm already changing my diet due to diabetes, a lot less sugar and lower fat versions of everything, stuff like that. Plus I do like fresh veggies and am growing a garden so I have an abundence of them at least part of the year.