My 43 yr. old stepdaughter has learned that she has fibromyalgia.

[Olney Blue]

Although we are relieved to have a diagnosis after endless specialist visits and diagnostic tests, the implications of a non-curable painful life are sending her into an even deeper depression.

Is there any hope out there? She has reactions to nearly every drug, including Ambien, and cannot take more than 1/2 of a zoloft tablet per day. She is in constant pain with headaches.
However, is dizziness and vertigo part of this syndrome? She stumbles around sometimes because of the vertigo.

Any advice would be appreciated. I'm glad DU has this forum.

[mopinko]

1. lyrica works for me

i wasn't prescribed this for fibro, but for some lingering nerve trouble after a disk fusion. but it really has helped me A LOT. especially for the energy levels. also tell her to make them check her vit d levels.
i am not sure if it is part of the syndrome, but i do get bouts of vertigo also. i am a horrible klutz, especially when i am tired.

my advice to her is sleep as much as you need to sleep. get a study maybe even. fibro is not always incurable. sometimes it is being caused by things like apnea, or restless leg, that are treatable.

good luck to her, and to you.

[Olney Blue]

3. Thank you very much, mopinko. I have read your other posts on this

group with great interest and they are very helpful.

Her doctor hasn't mentioned Lyrica yet, but wants her to see a psychiatrist for pain management.

[mopinko]

5. the front line drugs for a long time were

elevil, which is an old AD, in a very small dose, and flexeril, a muscle relaxant. these are both generic drugs now, and not very expensive. skelaxin is a more modern muscle relaxant, that causes less drowsiness. i take the flexeril at bedtime, when the drowsiness is useful.
i try, every once in a while, to back out a drug just to check that it is actually working, and i do feel the difference without that muscle relaxant. especially with sleep. i really wake up in a knot without it.

i have been on a lot of pain medications over time, and have had as many boomerang as help. taking them daily, regardless of pain, has never really helped. i have one now that i take as needed, and it is usually worthwhile.

[Olney Blue]

6. My stepdaughter's rheumatologist told her yesterday that she needs

a psychiatrist for pain management. Have you ever tried that?

[mopinko]

7. no, and really i am kind of surprised

rheumies get the fibro patients, sometimes whether they like it or not. personally i always thought it should be treated by neurologists, since it is a brain malfunction. sleep docs, who are neurologists, would be even better. i have been thinking about bugging for a sleep test, myself. i have never had one, and i suspect i am one of those people with delta intrusion. life is getting more normal for me, but i still sleep 10-12 hour a night. if i could shave that down a little, it would help a lot.
but a huge chunk of what rheumies do is pain management. and many fibro patients also have autoimmune troubles of one sort or another. so, i find it kinda odd, but not ridiculous.
i wouldn't refuse to see a pain specialist. will she still see the rheumie?

[Olney Blue]

8. We saw a neurologist at a top research institute today.

He referred us to a headache and vertigo specialist. He also wrote a prescription for Lyrica.

He said that the diagnosis of fibromyalgia that we got from the rheumatologist was "intriguing." I asked him what he meant by that, but I didn't get a clear answer.

My God, it just keeps going and going with these doctors,,,, no relief in sight.

[marybourg]

9. Rheumotologists are good at pain management

but don't have a lot of tools to deal with the non-pain issues of fibromyalgia. Psychiatrists are accustomed to prescribing the types of drugs that help people with fibromyalgia most and therefore are better at doing it. I would try to get a recommendation from a local fibromyalgia support group if possible, or a local patient with fibromyalgia and see a psychiatrist who already has a some fibromyalgia patients.

[Ms. Toad]

12. Watch yourself with the flexeril.

I have had a persistent muscle spasm for 25 years, and until recently flexeril was the only thing that was able to interrupt the pain cycle once it started. Even so, I rarely take it (once a year or so ago - before that probably 5 years), because for me (and it has been reported by others) it causes both emotional and physical depression (drowsiness/brain fog) - and the emotional depression lasts for a week or so after I'm off the medicine. I take it only when it is bad enough that I am willing to tolerate the depression that ultimately follows.

I recently found that skelaxin can also interrupt the pain cycle, without the accompanying depression.

(I'm passing this along, since it took me quite a while to connect the emotional depression with flexeril, then I did a bit of research and discovered it wasn't uncommon.)

[Warpy]

2. This is a better time to be diagnosed than it was 10 years ago

because doctors are finally starting to figure out it's not just psychosomatic or dreamed up by a bunch of whining hypochondriacs.

This is a very real disease with very real changes within the brain. It's all in our heads, but certainly not in the way doctors told us it was for so many years.

There are drug and non drug treatments out there that will help her maintain as much function and comfort as possible. She will likely need to be on some medication at least part of the time, but there is no reason she can't continue to work and enjoy her good days fully.

Depression after being diagnosed with a chronic illness is perfectly normal. She will work through it in her own time with or without anitdepressants.

Vertigo is part of the syndrome for a lot of people and can be controlled by medication.

Good overview at the Fibro Center: http://www.fibrocenter.com/content/about.jsp?source=google&HBX_PK=s_fibromyalgia&HBX_OU=50&o=25229704|193636897|0

Online support community: http://www.patientslikeme.com/fibromyalgia/community

[Olney Blue]

4. Thank you for the encouraging words, and great links!

:hi:

[dixiegrrrrl]

10. I was diagnosed in 1999, no symptoms now.

After years of varied and increasing symptoms, and becoming unable to work,
in 2004 I stumbled upon information about celiac disease in adults.
I stopped eating anything with wheat in it.

First fibro symptom to leave was the pain, in about 4 days, the constant pain started to diminish, was gone in 7 days.
it took about 3 mos. before I noticed any deep reduction of "brain fog"
but within 6 mos. I could concentrate, read, etc.
Bowel problems disappeared but returned if I ate anything with even a teensy bit of wheat.

Energy came back slowly and sleep got much better.

I also started taking multi-vitamins, with extra magnesium.
I took 5-HTP ( 50 mg am, 100mg pm) for depression type symptoms, for about 2 years.
Helped with lingering sleep and serotonin issues, now I sleep fine without it.

If you check into celiac disease, you will find that in adults, the symptoms are very multi-faceted, and not really well known to the medical estab.
but since it causes a form of mal-nutrition, it makes sense that the whole body is affected, and thus the multiple symptoms of fibro.
There is now a blood test that shows if a person is allergic to wheat.

I am not a doctor, I am not playing one. I am merely sharing what worked for me.

[ThomCat]

11. Sleep whenever you feel that you need to sleep.

I find myself sometimes sleeping through entire days. If that's what I need to do, okay.

Don't push it. Weight and impact exercises makes it worse. But a lot of constant daily movement exercises help. Keep moving all of those joints and muscles.

I've been told repeatedly that the headaches CANNOT be part of the fibromyalgia. The doctors clearly don't know more than we do about this. The headaches ARE part of the fibro. I haven't found anything that works on them. I wish I had some good advice for this.

She has my sympathy. I really hate it when someone new joins our club. :(

:hug:

[efilon]

13. Rheumatologists and fibromyalgia

My experience with a rheumatologist was awful. I was diagnosed about 12 years ago by an orthopedic doctor. I lived with the pain and was able to control it for several years. I have also fought MDD for years so maybe the antidepressants helped. I was seeing a chiropractor for my back and neck, after seeing me several times, she finally told me, she didn't think she could help my pain because she believed it was fibromyalgia. I told her I had been told I had fibromyalgia many years ago. She recommended I see a rheumatologist. Anyway, to get back to the rheum doc. I saw her about a year ago when I was having a really hard time with the fibromyalgia. She told me "We realize now that fibromyalgia is actually not a disease, it's "just" a lack of exercise and conditioning." That was it, sent me on my way, oh yes, also the fact that I smoked at the time, smokers have a lot more problems with pain. And I really should lose some weight, as if I didn't know I needed to lose weight. WTF?? This was a faculty physician at a teaching hospital. She did take blood and put me on Vitamin D because my level was low and low Vitamin D levels can cause pain.

My GP doesn't really think fibromyalgia is a true disease either but he finally did give me flexeril to take at bedtime. It does help me sleep, in fact I can't sleep without it now, but I don't notice that it helps with the pain at all. I went shopping the other day, probably about 2 hours all told, only in stores with carts because I need to be able to lean on them when the pain gets too bad. It took me two days before I felt good enough to get up and about. Haven't been away from home since.

Anyway, good luck to your step-daughter. It sounds like she has a least found someone who believes there is such a thing as fibromyalgia. That's a good start.

[OhioChick]

14. I was diagnosed with FMS in my 20's....

I tried dozens of drugs to no avail. The only things that I have found to help all this time are mild exercise and massotherapy.

[hyphenate]

15. I'm not sure that your step-daughter

is seeing a psychiatrist, because there is a doctor called a "physiatrist," which specializes in pain management. However, psychiatrists are another option--I just thought I would mention that other kind of doctor as well.

I was diagnosed a very long time ago, it seems, comparatively. It was in 1993, and I got lucky, with a doctor who was open-minded about a lot of things. Some research online brought me to the thought of trying amitriptyline (Elavil), and my doctor concurred. It helped at the beginning, but over time, it has waned in its effect. I've also been on cyclobenzaprine (Flexiril), gabapentin (Neurontin), Cymbalta, and the usual NSAIDs, but in the actual pain department, only a lesser known NSAID called Mobic (generic--meloxicam) has helped. The only bad part about the meloxicam which has bothered me is that it exacerbates any kind of stomach problems which are often a given with anyone who takes anti-inflammatory medications.

Every person is different, though. Any drug "cocktails" should be on the basis of symptoms, and then the patient and the doctor should have a sit down discussion on them and a good followup.

[Hekate]

16. After attending a lecture by a neurologist last year, I found this website helpful...

I'm 61 and have been living with fibromyalgia about half my life. I was diagnosed about 20 years ago, given a tricyclic antidepressant, and that was that. No other information was really forthcoming, but at least I had a diagnosis and the improved sleep definitely helped the pain.

The lecture by Dr. Rosenfeld I attended last May was a revelation. Who knew my diagnosis of IBS and sleep apnea were connected to the FMS? The exhaustion, the brain fog... all connected. And as for the weight gain -- well, that turned out to be directly related to the tricyclic antidepressant, and don't let anyone tell you differently.

Please note that the lecture was given by a neurologist, but that not all neurologists are interested in this area. When I had my first sleep disorder test 4 years ago I gave a complete medical history that included all my other ailments. That doctor was also a neurologist and never made any connection among them, nor did the neurologist who took over his practice a few years later. They saw my severe sleep apnea, prescribed a CPAP, and that was the extent of their interest. When seeking a new doctor, ask up front if they know about Dysregulation Spectrum Syndrome and how these various conditions overlap. Don't bother going to one who dismisses the reality of any of these conditions.

In any case, I hope the links below and the further notes that I took at the lecture will be of some assistance to your stepdaughter.

Hekate
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dysregulation Spectrum Syndrome http://www.fmnetnews.com/basics-overlap.php

QUOTE
Overlaps with Fibromyalgia

Fibromyalgia syndrome (FMS), chronic fatigue syndrome (CFS), multiple chemical sensitivity syndrome (MCS), myofascial pain syndrome (MPS), and other conditions form a family of overlapping syndromes. In fact, researcher Muhammad Yunus, M.D. , of the University of Illinois College of Medicine, claims, most patients have more than one syndrome. Thus, he views FMS and CFS as being part of a larger spectrum of conditions, which he calls Dysregulation Spectrum Syndrome or DSS (see diagram below). Dr. Yunus uses the term dysregulation to mean biophysiological abnormalities, possibly in the body's neurological, hormonal and chemical systems.


CFS = Chronic Fatigue
RLS = Restless Legs
Irritable Bowel
Irritable Bladder
MCS = Multiple Chemical Sensitivity
Primary Dysmenorrhea
Migraines
PLMS = periodic limb movement during sleep
Tension Headaches
TMJD = temporomandibular joint dysfunction
MPS = Myofascial Pain
FMS = Fibromyalgia Syndrome

Backing up Dr. Yunus’ commentary are studies by Dedra Buchwald, M.D. , of the University of Washington, Anthony Komaroff, M.D. , of Brigham and Women’s Hospital and Don Goldenberg, M.D. , of Newton-Wellesley Hospital. It is always important to keep these overlapping syndromes in mind because the presence of one or more syndromes could impact your treatment. These three researchers have shown that CFS and FMS overlap in patients by as much as 75%. When it comes to MCS, this syndrome is present in roughly 50% of FMS- and CFS-diagnosed patients.

http://users.wildblue.net/wmson/yunus.htm

He presented arguments against FM as a depressive illness: 
* the prevalence of depression in FM is similar to other chronic pain conditions 
* FMS and depression have different biochemical characteristics, as found in serotonin and hypothalamic-pituitary-adrenal axis studies 
* the types of sleep disturbance are different 
* the characteristics of cognitive dysfunction are different 
* FMS responds to much smaller doses of tricyclic agents (he doesn't call them antidepressants) 

As to the fact that tricyclics can help PWF, he points out that there is an antimalarial drug that has been found useful in treating RA, but that doesn't prove that RA is malaria. 

FROM MY NOTES ON THE LECTURE

Functional MRI actually shows the pain when trigger points are pressed. That means objective data.

Meditation for stress reduction absolutely should be required for treatment

Stretching exercises such as yoga to combat stiffness

Dietary supplements -- he didn’t say how much, but I wrote everything down
~Avoid sugar and white flour because of cortisol
~Magnesium with malic acid
~DHEA
~Melatonin
~Antihistamine (sleep)
~L-5 HTP
~St. John’s Wort
~Vitamin D

Deep sleep deprivation --> Central pain augmentation --> Hormonal dysregulation --> Deep sleep deprivation

50% less serotonin than normal
a high dose (60 mg) of Duloxetine (Cymbalta) 2x/day
Growth hormone is supposed to be secreted in delta sleep (deep sleep) -- aids in nerve repair. In FM people, there is a deficiency.

Sleep studies show alpha waves all night long. Those are “awake” brain waves. Xyrem aka Sodium Oxybate aka Gamma hydroxy butarate aka “the date rape drug”. A narcolepsy drug. It really works. But in order to get the FDA to approve it, it had to be compounded with a great deal of salt in order to make it unpalatable when dropped into a drink, making it unsuitable for those with high blood pressure.

Fibro-fog --> Low thyroid and thyroid resistance. Doesn’t show up on the standard blood tests. Takes a large dose to make a difference, but really helps.