When you have an illness like fibromyalgia and chronic fatigue syndrome that can cause dozens of symptoms, many of which wax and wane over time, it's hard to know which ones to tackle first. And when you consider the need to find treatments for each individual symptoms, it can be daunting.
Something that can really help, in my experience, is identifying symptom clusters. Which of your symptoms come on around the same time? Which ones seem to lead to others?
For example, does pain seem to lead to brain fog? Or does brain fog typically come on 2-3 days before a flare? These kinds of patterns offer clues about treatments.
Here's a real-life example: Several years ago, I developed a tremor in my hands. In researching tremors, I discovered that they can be tied to low dopamine levels. I looked at other symptoms of low dopamine and realized I'd been having a cluster of them -- impaired balance, rigid and achy muscles, and worse-than-usual brain fog.
I looked into natural ways to boost dopamine and found out about rhodiola rosea and theanine. I started taking rhodiola and it helped some. Theanine comes from tea, so I increased my tea intake to what's considered a therapeutic level -- at least 3 servings a day. The tremor went away, and the other dopamine-related symptoms improved as well. I eventually switched to theanine supplements, to ensure consistent levels. When the tremor comes back, I take more. It's never failed to work.
I've used the symptom-cluster approach a great deal in my recovery. To identify your clusters, a symptom journal can really help. It's also a good idea to talk to the people around you -- what patterns have they noticed that you may have overlooked? It can take a few months to identify your clusters, especially if you have flares and remissions.
Once you've identified clusters, you can look for underlying causes of that set of symptoms. Is it your immune system? Is it low growth hormone? Could it be a food allergy or chemical sensitivity? It's not an easy process, but it's definitely worth it. Once you have a likely cause, you can look into treatments. Make sure to discuss all of this with your doctor, who may be able to narrow down possible causes a lot faster than you can on your own and then can help guide treatments.
One thing you DON'T want to do is take your symptom log to your doctor -- he or she won't have the time to look over and analyze such a huge amount of information. That's a tool for you to use to get started on the right path.
Most of my significant improvements have come from treatments aimed at neurotransmitter balance. You can learn about those symptom clusters and treatments for them here:
You can get valuable clues about clusters from treatments that do and don't work for you. If antidepressants don't help but supplements that help with immune function do, you know you need to focus on immunity instead of neurology. See Supplements for Specific Symptoms to help with this process, and also look back at which treatments have failed for you.
Have you been able to identify any symptom clusters? Has it helped you find treatments that work for you? Leave your comments below!
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Unfortunately my doctor couldn’t even handle my list of symptoms from the 6 weeks prior to my appt (from which had ?’s) — I’m sure the symptom log would have over-whelmed her even more it does me. If she was as familiar with fibromyalgia as she “pretended” to be, the symptom log would NOT be an overwhelming threat to her, and shouldn’t be to any Dr who claims to be able to treat fibromyalgia. I miss my Dr in AZ – he knew how to handle a appt with his fibro patients very well.
find a dr that has a worked with fibro patients for at least 5 years. The right dr, and seeing them at least quarterly, is making a major difference because we are able to get on top of things and manage meds better. This should be someone who won’t rush you and gets to know you well. My dr. has seen me before fibro and now with it. I take a pharmacy of meds for IBS, GERD, hypothyroidism, etc and he is the voice of reason in the midst of this mad pharmacy gone wrong. He is slowly removing one med, sometimes with no replacement and sometimes giving me one that handles several issues instead. Acupuncture and the herbal tea he made for me makes a major difference in my life for a while, especially to stablize. Still use when flaring or brain fogging.
Do you mind me asking who your Dr. in Arizona is, I am moving there and would love to find a good Dr. who works with FM
I have been dianosed with CFS, six years ago. My PCP passed away and I am now looking for someone that you would suggest. I need someone willing to listen and go over my meds, not change them immediately. I am taking Lorocet, Soma, and Ambien. Just enough to get by, not enough to eliminate the pain.
They are weaning me off Lyrica and putting me on Nortryptoline. Has anyone had better success with the Nortryp.
Outspokencrony – I’ve been on just about everything. Lyrica helped a little with the pain … Nortriptyline? helps with sleep but my weight gain was just awful. It is the most powerful of that drug line … if the weight gain is too much, there are other ones in that line, i.e., amitriptyline, etc., that can help, too. I gained 15 lbs. in 3 days and a total of 50 lbs. Needless to say, I don’t take it anymore. A great pain mgmt. doctor is a Godsend … I have one that takes care of everything … after 65 doctors and 6 years, we’ve settled on a list of pills that contains Percocet and Cymbalta … like everyone says here, you have to try multiple drugs until you find what’s right for you. Sending a prayer your way
Adrienne, you make some great points in this and your previous article about symptom clusters. You inspired me to share some more thoughts on my blog about advocating for ourselves with our doctors: http://fibrokitty.blogspot.com/2011/04/with-fibro-you-may-be-your-only.html
Beyond just keeping track of our symptoms, doing some research before we got to the doctor to figure out which ones go to together will do a lot more than just showing up with a random list. By identifying the clusters and putting possible causes with them, you can go to the doc more prepared and they can follow up on those thoughts, rather than be over-whelmed. With Fibro, many of the docs will so easily just pass it all off to “Fibro” without looking at what other causes there may be (and therefore what they could do to treat and clear some of those symptoms).
Great Article! I agree that keeping a journal is essential. I often suggest to fellow “fibromates” that they even look back just the past 24-72 hrs to see what they have eaten, activities, emotions, etc. occured. I too would appreciate the name of the physician in AZ that is amenable to working with us. I head the Scottsdale Empowerment Fibromyalgia support group and we would love to add his/her name to our resource list. Thank you again for this article and any further postings and comments. It’s good to know you are not alone in this world! In peace and wishing you good health – Bonnie
Migraines used to be a huge issue for me, along with all the other fun typical symptoms. When I was diagnosed with CFS/FM, I was sent for allergy testing. After a few months of cutting out all the allergans I learned about, I realized that I had not had a migraine. I haven’t had a migraine in six years. I think allergies and intolerances can play a much bigger role than we realize.
I have recently been having edema of the legs and feet and more fatigue. I went to a nurse at my oncologist office to see if it had anything to do with my NHL. The nurse saw the pitting in my legs and feet and heard everything I had to say. She said it could be from my age (51)and or my weight (230) or a change in my Thyroid. She ordered blood work right away. It came back saying that my Hypothyroidism that was treated already, had changed by 4 points more Hypo. So now I am taking 137 strength medicine instead of my usual 125 from ten years ago. I am still having some swelling but it takes over a month for the new medicine to start working fully. Learn your body and how it acts. Changes might be nothing but don’t ignore new symptoms, go see your doctor or nurse until someone takes it seriously. Sincerely Sharon again
Keeping a diary sounds wonderful, but my doctors only have 15 minutes per patient. Even a summary is too much for them to handle, as there are too many symptoms and too many other chronic illnesses (asthma, allergy, etc.)
So how do you deal with those 15 minutes??? Too much to say, too little time.
Adrienne, as usual, your article is fabulous! I’ve never thought about clusters, but it makes a lot of sense. Bookmarking this to re-read when I can think a little more clearly.
In most cases has been detected that chronic fatigue syndrome is due to the bad posture that young people have in their schools or the stress caused by the tension of the study or work. I remember that Findrxonline mentions that this is not very common because people suffering from this disease are adults between 45 and 60 years since acquiring this disease more easily by the pain they feel at that age. One of the alternatives by the doctors are prescription medications – vicodin, lortab, or oxycodone – because they control the pain severe or moderate, although they must be prevented by their side effects.
A symptom log would be too much for my Dr to absorb in the HMO 15 minute per patient system. My fibro is severe and I have other multiple chronic conditions as well. What we are now doing effectively is noting any changes rather than listing it all. Dr is able to focus on those much better now.
I would love to have all the symptoms addressed, but being so severe, I am pleased to have found a way to communicate with my Dr within the HMO boundaries.
Lyrica never worked for me! I’ve been on Savella for about 2yrs now and it has helped me better than anything! Less pain – than ever. Ever. Still flare ups but not as severe or as often. Still get bouts of fatigue but usually only after a. Trip or i overdue! Went to PA to take care of my 34 yr old son after back surgery for. 13 days. And slept on the couch and til I got home I had a flare up for 2 weeks all I wanted todo was sleep for 2wks and had some pain! Not as bad as before but just cn stay awake. Savella is a God send to me!!! I’m just sick of people telling me I don’t look sick! Or how someone else they know has fibro and they work allday with the pain -i’m on disability!!!
Thanks to these newsletters I have tried different things and drugs for my Fibromyalgia. I have taken, Lyrica, Neurontin, Cymbalta, etc, etc. I finally took my self all my meds and it was the most miserable I had ever been. Pain and depression were out of control. I picked myself up and went back to my doctor. I did not any medicine that was going to make me gain anymore weight. She put me on Effexor. Mentally I had been great. I hadn’t even gone up to the dosage that she told me to take. I was still in pain though. She told me that taking anymore wouldn’t make the pain any better. Since my head was on straight it was now time to do something different. In one of these newsletters I read that a Gluten free diet had helped some people. I was told if it was going to work, it would take about a month. 2 weeks into the diet I realized I was able to go up and down stairs and get off the toilet without trying to figure out how I was going to do it. My energy is way up. I’m only doing this now for about about 1 1/2 months so I am still learning about it but feeling much better.
I have CFS/ME/FIBRO .. I live in South Africa , we have something in this country called ‘ Olive Leaf extract’. I take the tablet form, the minute I feel any symtoms starting .. Or any infection.. Which is a lot of the time, sinus inf or bladder or kidney , ANY Infection … It is a natural antibiotic , so you can’t take it all the time, .. The first day 2 tabs every two hours ( ie approx 8 to 10 tabs a day) the second day less , 3rd day less untill feeling better ! .. Another pain reliever is ‘ Biofeedback ‘ therapy , this ‘balances’ all your organs, detoxes, & cleans out all the bugs etc… Approx every 2 or 3 months. Hope this helps everyone as it has helped me.
TODAY SO MUCH PAIN. WONDER IF IT IS NOT BETTER TO JUST DIE. MY HANDS SO WEAK, NO BALANCE, FELL OVER SHOES! INFECTIONS. FLU. MUSCLE PAIN. CANNOT SIT LIE DOWN OF WALK. CANNOT TAKE A SHOWER. NO STRENGTH TO LOOK AFTER MYSELF.