When I was first diagnosed with fibromyalgia, my doctor (who, I’ll add, never-not-once implied the pain was all in my head) told me the disease was non-degenerative — meaning that as bad as it might get, it would not get continually worse over time. I clung to this like a drowning rat to a deck chair off the Titanic.
But now, I’m reading some things that suggest maybe the good doctor was misinformed. For instance: Dr. Mark J. Pellegrino. Now, in addition to being named after an awesome and overpriced imported water, Dr. Pellegrino both treats patients with, and suffers from himself, fibromyalgia. He even wrote a pretty helpful book called Fibromyalgia: Up Close and Personal . (Full disclosure: that’s an affiliate link and I’ll get, like, thirteen cents if you buy it from this link. Or something.) The guy knows fibro backwards and forwards, you might say. Dr. P. had this to say recently in an interview with ProHealth.com:
Q: Doctor, in your experience does fibro get worse over time or does it get better as you get older?
Dr. Pellegrino: In my experience from seeing more than 20,000 people with fibromyalgia over the past 20 years, I can say:
• About a third of the people do better over time,
• A third of the people stay the same,
• And a third of the people get worse.
So that means that two-thirds of the people will not get worse which is good.
Those who are diagnosed quickly after developing fibromyalgia symptoms and tried different treatments and find successful treatments are more like to do better over time. As we all get older, we tend to develop other conditions from degenerative factors, wear and tear, injuries, etc. that cause pain and can make fibromyalgia even more painful.
I think the key is not necessarily trying to get better, but trying to have a stable baseline where one’s function is good and a good quality of life is reported.
Now, obviously, this is one doctor’s experience. Granted, it’s extensive experience, but still — anecdotal. However, if a third get worse — even if it were somehow implausibly just his third — well, that’s a horse of a different color, as my father used to say.
This question is important to me personally because I have experienced such a downturn in my health in the last 12 months or so. Most of this downturn I can directly attribute to the other chronic conditions, but I also know fibro pain from my general back pain. I can tell which is which, and what I’m feeling is not just bad back pain. The fibro, when it flares, is definitely getting worse — although I haven’t seen a significant increase in the frequency of flareups, so that’s something, I suppose.
So what I want to know is this: what’s the general consensus? Is there a general consensus? Or is this disease as maddeningly unpredictable universally as it is individually?
Stupid fibro.
Stupid fibro. I love your site & could definitely put together a guest post with the understanding that you are a much better writer than I am. I would say that I get slightly worse every year. I don’t know that it’s fibro as much as it’s not having any remissions or any sleep which just wear me down over time.
Aww, thanks, Sarakastic! I love your site, too. You helped inspired me to write about my own pain.
I totally get what you’re saying about the distinction between the fibro itself and the lack of rest or any kind of a break. It seems sometimes that I could deal much better with the pain if I could just have a freakin’ break once in awhile!
I followed a link, here, from Google; looking at the question of fb as degenerative disease. I’ve been to other sites, too, looking at the same question, having been advised that I could be turned down for long term care insurance if it is degenerative. In reading the posts, here, I thought I might share my own experience.
I have found a palliative, pain treatment that helps me stay functional.
It is homeopathic mag-phos: 3X, 6X or 6C, whichever you can find. It is sold in health food stores. Our Whole Foods, carries it in their health section. It is simply cell salts in extremely minute quantities that go from under the tongue directly into the blood stream and, then, very quickly feed the cells that are screaming in pain.. (Apparently, cells can only take it in in very minute doses, but , then, can need more very shortly.)
Recovery/relief takes less than a few minutes. Since not everyone’s fibro is the same, of course it isn’t necessarily for everyone, but if it helps a little, it won’t harm you to take more until you have the relief you need (unless you have a true allergy to the milk sugar they use to bind it into tiny pellets; then, of course, you would avoid it because of your allergy.) You can take more, again, if and as soon as pain begins to recur.
My pain is migratory and generally not dull. It can be quite acute, moderate, sharp or crampy. If it happens in my chest or esophagus, it can feel like a heart attack. Mag-phos relieves it. Wherever it is, usually mag-phos provides relief. I keep it with me all the time. I order it in large quantities (4000 pellets) on line. ( I don’t recommend this unless you have tried a small quantity and found it works.) It isn’t very expensive, relative to standard drugs.
The times that it does not provide relief are times when there is something else going on. Migraine, for instance, or an injury or inflammation from some other cause.
A few other things have helped:
1. I used to get a lot of migraines. For years, I could avoid them by using a soft neck brace; the kind that velcros around the neck. I slept with it and wore it any time I expected to have to use arm/shoulder strength, as in lifting: also in the beauty chair for shampoos and at the dentist’s office. Migraines aren’t much of a problem, now, so I am not using it except in the beauty and dental chairs.
2. I don’t lie flat to sleep. There is too much pain in that position. I bought a wedge which allows me a choice of angles. Propped in that position, I have been able to get good sleep. I do waken in the night with discomfort when I have slid down, but it is a quick adjustment back into position and I am back to sleep. One thing that slows the sliding process when I am on my back is a pillow under my legs, right where thighs meet buttocks. Since everyone is so different, I think the main thing about this is learning to experiment to see what works.
3. Muscle fibers seem to be weaker with this disease. At least that is true for me. Consequently, there have been many times when a minor movement has torn a few fibers and my back has reacted as if it had a major injury. I learned that I could prevent this during flares by wearing a low back brace during work. If the injury had already taken place, the brace helped mitigate the pain of movement, but prevention was how it helped the most.
Doctors generally advise against the neck brace and back support, but I have found using them enhances my ability to stay active .
Repetitive movement of any kind tends to cause stiffness and, often times, cyst formation. (Even continuous walking ). I have learned to vary exercise so that repetition is minimal. Yard/Garden work provides the best varied exercise for me. That said, I will be quite stiff if I don’t first take a couple of ibuprofen before I start working. I know ibuprofen is hard on kidneys, but if I don’t get some exercise, I am afraid I won’t need the kidneys for very long. Trade-offs!
Well, I hope this reaches someone whose symptoms are enough like mine to warrant trying some of these practices.
Thanks for the comment, Doll! So glad you found some relief that works for you. I’ll be honest: my opinion of homeopathic and alt-med treatments is that whatever relief they offer is placebo-based – but that’s been my experience, and everyone’s different, so I totally accept the possibility my opinion is wrong. Whatever works for you, is my deeply held and cherished belief when it comes to chronic pain treatment – so thank you for sharing your experience here! I hope others can benefit from your story, and that you come back!
I keep hoping I have other conditions that are making me worse but every time I have X-rays or scans nothing else is ever found. I also keep trying to find research on the progressiveness of this condition as I have got steadily worse over the last 15 years. what i used to call my worst flare days are now my good days. It definitely comes down to a “One size” does NOT fit all with us Fibronaughts. Some can stay on a level, even get better while a small group of us seem to keep going down the Fibro spiral.
I’ve been suffering from Fibro since I was about 17. I’m now 28, and despite having tried several courses of treatment, from pills to yoga to meditation, I haven’t found anything yet that truly lets me stay functional. The closest I’ve gotten so far is taking a combination of 300mg Lyrica, 30mg Baclofen, and 10mg Meloxicam about 3-4hrs before bed each night. And even that doesn’t always work. I’ve been looking into other treatments, as I recently lost my insurance, and came across a supplement called Kratom. Has anyone else used this?