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Chronic Fatigue Syndrome vs Fibromyalgia
3 Replies
PEANUT - September 27

Hi. Once again I am sooooo confused after a visit with my rheumy yesterday. He too is not sure what to do with me and has referred me to a 'specific' FMS specialist at the University of Alberta Hospital in Edmonton, Alberta, Canada which is where I am from. I do have some 'trigger points' which would indicate FMS although I do not feel really bad pain much of the time. My biggest issues are fatigue, digestion problems, dizziness, cognitive problems and hard to catch that breath. Also I seem to have developed an intolerance to cleaning products, scented shampoos, strong smells, and loud noises. I did a sleep test and it ruled out sleep apnea. I generally need 9 to 10 hours of sleep and am still tired all day. So I spend my days feeling 'unplugged', dizzy and usually nauseas . I still force myself to take walks but am usually totally exhausted when I get back. Also I'm sure my town thinks I have a drinking problem as I walk the street in a dizzy state recognizing that I am not walking a straight line. I usually force myself to eat in spite of the nausea. And, though my food intake is definitely down over the last 10 months, between Cipralex and Cymbalta, I have put on 10 pounds - my metabolism must be totally screwed up. Now, even with the nausea, what I do want to eat is unhealthy foods, which combined with little aerobic exercise, is not a good combination. Anyway, the last thing my rheumy said is that it sounds like I have Chronic Fatigue Syndrome. Also, before these 'non-pain' symptoms began, I had a viral infection but do not know what it was exactly. I only know that since then, (almost 2 years now) I have not felt 'well'. All my numbers are good ,(cholestrol, blood sugar, blood pressure, weight ) my heart and lungs have been ruled 'healthy' after several tests. Any meds that I have tried have only made me sicker. So now all I take is a small dose of Trazodone and Clonazepam every night to help with sleep. With my vital organs and my 'numbers' being healthy, why do I feel like CRAP? Am I going crazy? Besides referring me to a female FMS specialist, my rheumy also suggested Cognitive Behaviour Therapy with a psychiatrist. Just hearing the word 'psychiatrist' makes me feel like maybe I have 'lost it'. Honestly, if I was not living 'this nightmare' I would not believe it if anyone told me that they were feeling as I have been. I would really question their sanity/frame of mind. This has been a real eye opener to me and hearing about this through this forum has helped me to believe and accept, and yet sometimes... It just really makes no sense. So is it possible to have CFS and not necessarily FMS? Or is it likely to have both? What is the opinion of cognitive behavioural therapy? I always feel like I am writing an essay when I post to this forum. I imagine my message is long enough that some of you have had to take a 'pee' break, Lol. One thing that I try to not let waiver, is my sense of humor -after all, I have a husband, and as a long ago t-shirt that I had read 'A husband is living proof that a wife has a sense of humor'! Seriously, I don't know what I would do without my hubby of 32 years - he is my rock!!! Anyway, thanks for taking the time out to listen to me and I send out nothing but the best wishes to one and all!


axxie - September 27

Peanut, it could all be a virus, XMV virus to be exact. Doctor is on the right track. Please see my post Profound Exhaustion, Sleep Problems, Muscle and Joint Pain read through it and see how your doctor is no fool. You feel like crap because you have fibro and you will feel this way for a longwhile until your doctor figures out the magical potion that will make you feel better again. Give it a few years, and in the mean team why don't you try to write down your symptoms and what you eat and how you feel everyday blood pressure etc. Present to nxt doctor's visit. Don't like and do put in at what time ou took your medication and if any other pill you take, what you eat, drink and what activity you have - go to work or not. Do it everyday it will help you figure out if you are sensitive to your meds or food etc.

The meds he has prescribe everyone of us went on them and then when they have gotten other tests done they will either add or give you new ones to try.

Never go see the doctor and complain, he's your first line of defence, trat him with respect.

You haven't lost it, we all went through that. Please go read my post. Good luck


January - September 27

Hi Peanut -- I think the most important thing is a really good diagnostic workup (and you might have to ASK for certain tests based on your research). Fibromyalgia is a "syndrome" right now. That means it's an easy dumping ground for people with symptoms that fit the syndrome. The pharmaceutical companies have jumped on the bandwagon and are minting money with treatments that only help half of us at best - and cause problematic side effects for most of us. What is fibromyalgia exactly? Nobody can say, it's different in everyone. Your best line is to educate yourself and read up on all the possible overlaps.

One example: I cured myself of my widespread fibromyalgia pain by stumbling on an article about celiac disease minus the GI symptoms - i.e., celiac disease that manifested with severe chronic pain. I thought it sounded like me - so I stubbornly followed the diet. This was more than 5 years ago, and none of my doctors knew about celiac. Now they agree, since now they've been educated about it and I've seen a specialist - with my response to the diet, I definitely have gluten intolerance and probably celiac. My tests however, came back negative because I was already avoiding gluten - and I'm not willing to eat gluten for 3 months just to confirm what I already know. However, this only cured some of my fibro symptoms, not all...

I think fibromyalgia people fall into subcategories - there are some websites that describe these different categories now. Autoimmune diseases. Food allergies. Psychological or physical trauma. Environmental pollution. Sleep apnea. Viral infections, as Axxie notes (and I think that is a BIG factor that is overlooked - but XMRV is controversial - some studies say yes, some say no - there are many other viruses out there to be studied). I have tried antiviral meds and they sure helped my brain fog! You can google Dr. Dan Dantini and Dr. Jacob Teitelbaum for info about viruses too.

I've recently been intrigued with porphyria, a supposedly very "rare" disease. As I read over the symptoms you listed, I couldn't help but remember the list I posted earlier today about porphyria - so I hope you see that as well. A good site for information is the American Porphyria Foundation, and by following links on that site, you can get to a huge list of drugs that will cause your body to go into porphyria. If you have porphyria, you should avoid iron supplements, alcohol, estrogen, and many antibiotics and anesthetics too. (You mentioned you felt worse with some of the drugs you tried.) I had a number of years when I was extremely ill -- I was being repeatedly treated with drugs that are known to cause porphyria, and I had the classic reddish urine symptom of porphyria too - I kept getting sicker, and no one could figure it out. The only way I recovered was to quit all those treatments and drugs. I only learned about porphyria because of Cher's posting on this site recently! This is a genetic illness, and many people go their entire lives suffering mild symptoms of this disease, they are never diagnosed. They have flare-ups just like fibro. Just something to think about. Probably doesn't apply to you… but it MIGHT.

And BTW, cognitive behavioral therapy is probably the best kind of therapy for someone with chronic illness. It should be a little more proactive. Going to some regular therapists is useless - they just sit there and listen. You can talk for years….nothing changes.

As Axxie says, keeping a journal is really helpful. But as far as meds, do let the doctor know if you feel bad with something and talk to the head pharmacist! Before you take anything new, do your research online and figure out if you want to risk the side effects for the supposed rewards - make sure you have a proper list of them and read it. Your doctor probably hasn't. Just my opinion, but I don't think it's good to keep taking a medicine that is making your body revolt.

A consumer advocate, Dr. Sidney Wolfe, was recently quoted as saying it is best to stay away from any medication that is fairly new - he suggests you only use drugs with at least a seven year track record, because the FDA has done such a bad job of checking for serious long term side effects. The drug companies are so competitive, they put things out there too fast, they make more money, settle a few lawsuits (most people don't file one), and then withdraw the drug, if problematic. There is a gathering crowd of people who want to sue the makers of Cymbalta because of side effects and withdrawal. A good place to check on medications is the website at -- it is run by pharmacists. I don't know how long you took Cymbalta or when (or if) you quit it, but that might be part of your feeling "crazy." Cymbalta withdrawals can be really tough for a long time.

PS. I love your "husband" T-shirt. Truer words were never spoken! But you're lucky to have a good guy. (And I bet my post is longer than yours! LOL)


kvc33 - September 28

Yes, you can certainly have Fibro and CFS together. 75% of persons with CFS also have the muscle pain and weakness. Fibromyalgia ia much better 'known' than CFS, perhaps because there are so many health conditions that include pain. If your primary symptom is fatigue you are said to have CFS, if it is primarily pain then you are said to have fibro. The other symptoms are identical. I think you need to see a naturopath and work on your digestion, and if your nausea has come on since going on the meds I would consider getting off of them. I was nauseous for 2 1/2 years from simply taking calcium pills. I had no idea that was the cause so be careful about any supplements you are taking. I think you should test your blood pressure regularly and keep a record of it as low blood pressure can cause dizziness, and it doesn't have to be very low in CFS people because we have low blood volume, therefore a slight drop can cause dizziness or shortness of breath, it does in me and I take salt pills to keep it up.



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