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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 16 of 16. This is the beginning of the thread.
Posted by Quintal on March 26, 2008, at 15:43:59
I've just been talking this over with my social worker today and she's going to put it to the pdoc and ask him to make a referral to a special CFS/Fibro centre where they do tests. To be honest it's one of those newer diagnoses that I've tended to half-dismiss as faddy or psychosomatic. Afterall, I wake up most days aching from head to toe and have no energy, and I don't have fibromyalgia.... but over the last few weeks I've started to think that maybe I do. Or rheumatoid arthritis - the pain is that bad. On Monday I hardly dared move because I felt so rotten. I've come to realize that chronic muscle tension/pain is one of the factors behind my prediliction to painkillers and benzos. Of course I've known this for a while, but I've never bothered approaching any of my doctors about it because they didn't belieive I really had bipolar, never mind a borderline 'fake' syndrome like fibromyalgia. I just thought I would be wasting my time and probably getting deeper into the malingerer black-books, and who knows, I probably still am. Nevertheless I have someone to fight my corner now, and she told me she'd just made a referral for another patient for the same condition. Fingers crossed.
I'd like to try Lyrica because:
a) It's approved for treating fibro symptoms in the US.
b) Isn't approved for treating fibro symptoms in UK, but:
c) Is approved for treating generalized anxiety, which I also have a fair dose of, and:
d) Has mild mood stablizing and antidepressant properties (therefore useful for treating bipolar symptoms, although not yet licensed or widely accepted for this purpose).
e) Improves sleep quality and has low abuse potential (doesn't bother me, but should be a seller to pdoc).
So really it would seem like a logical choice given that I've tried nearly everything else. I've learned to expect the worst though, and when I suggested it at the last appointment pdoc ignored my suggetsion as it has no license for bipolar yet. It's such an effort to get him to think in terms of more than one diagnosis (I was hoping he would recognize that it *does* have a license for GAD, and prescribe it for that, but he seemed to have forgotten about my severe anxiety and I just didn't have the energy to contradict him). Alternatively, he suggested Depakote at the last appointment, which is vaguely similar in that it reduces neuropathic pain and acts on GABA in some way that I've forgotten. Maybe I'll have to settle for second best, at lest for a while.
Q
Posted by Phillipa on March 26, 2008, at 20:55:13
In reply to Fibromyalgia (?), posted by Quintal on March 26, 2008, at 15:43:59
Fibromyalgia is real need I think 7 positive pressure points for pain. Seriously google it. Phillipa
Posted by amyaub on March 27, 2008, at 10:41:17
In reply to Fibromyalgia (?), posted by Quintal on March 26, 2008, at 15:43:59
I've been diagnosed with Fibro and believe me, it's real. I had a real problem with fatigue and even nerve pain. There were days even a slight touch would send electrical sensations through my body. I take Neurontin for it, which is basically old school Lyrica (cheaper too). Made by the same company and all. My doc is into not following all the fad drugs, but going with the tried and true. Fibro really sucks and you can have flares with it (although the Neurontin has helped cut down on that).
Good luck on finding out what's wrong! I hope you get some relief.
Posted by zatar on March 29, 2008, at 0:46:46
In reply to Fibromyalgia (?), posted by Quintal on March 26, 2008, at 15:43:59
Fibromyalgia is real, but other conditions should be ruled out (eg. Lyme disease, Lupus, MS, hypothyroidism, Addison's disease, etc etc). If you've had a very thorough workup, then you might have Fibromyalgia. After seeing many doctors, including some renowned specialists in FMS/CFS, I found I do have Fibromyalgia and Chronic Fatigue Syndrome, but I believe ultimately FMS/CFS will turn out to have different profiles in different people (genetic or environmental differences).
Lyrica did little to help me and I've heard from several FMS doctors that it isn't the godsend everyone hoped it would be. Some ARE helped, and that is great, but others are not. Same for Cymbalta.
I hope you are that lucky person who finds a doctor who can go the distance with you to determine what is going on. It's not easy and there are no quick fixes, but you can improve your quality of life with lifestyle changes (think pacing), dietary changes, and medication.
Good luck.
-zatar
Posted by Quintal on March 29, 2008, at 10:11:42
In reply to Re: Fibromyalgia (?) » Quintal, posted by Phillipa on March 26, 2008, at 20:55:13
I have tenderness to pressure over my lower back and shoulders. I can't seem to find where the pressure points are meant to be, but maybe that's kept secret so the tests are more valid?
Q
Posted by Quintal on March 29, 2008, at 10:55:05
In reply to Re: Fibromyalgia (?), posted by amyaub on March 27, 2008, at 10:41:17
I was on Neurontin years ago and it didn't seem to do much, but I had more hope for Lyrica for some reason. Benzos work fine for me (muscle tension/pain), but my doctors won't give me them any more. I'm wearing a heating patch on my lower back right now, and it seems to be helping as much as painkillers. I've never tried one before but my dad had bought one from the pharmacy along with my regular painkillers for some reason. Have you tried TENS or anything like that? I have a machine somewhere, but I've never used it. I'm also taking tianeptine and I find that helps quite a bit with the sensitivity to slight touch - I think it's called tactile allodynia. Sometimes if I'm feeling well the increased sensitivity can be wonderful - I get tingling sensations all over my body just from massaging my skin. It seems as though it only becomes painful when my energy drops below a certain level.
Q
Posted by Phillipa on March 29, 2008, at 13:44:01
In reply to Re: Fibromyalgia (?) » Phillipa, posted by Quintal on March 29, 2008, at 10:11:42
I think not sure front of chest,shoulders and thighs maybe? Phillipa
Posted by tunguska on March 29, 2008, at 18:57:42
In reply to Re: Fibromyalgia (?) » Phillipa, posted by Quintal on March 29, 2008, at 10:11:42
After years of feeling crummy I finally saw a so-called specialist who told me it couldn't be fibro because a person with fibro couldn't do all the things I did. Like I have a choice? Then he said come back when it gets worse. WHAAAAAAT? The plan I had in mind was getting better or at least holding my own. So, if I have 6 pressure points instead of 7 its all in my head? Then I went back to the general guy who just starts throwing pills at me. Uh, I can guess too and I don't need to be screwed up on the med of the month while I'm doing it.
Posted by Phillipa on March 29, 2008, at 19:53:02
In reply to Re: Fibromyalgia (?) » Phillipa, posted by Quintal on March 29, 2008, at 10:11:42
I'll try a google search. Phillipa
Posted by Phillipa on March 29, 2008, at 20:02:35
In reply to Re: Fibromyalgia (?) » Phillipa, posted by Quintal on March 29, 2008, at 10:11:42
Afraid the pics of pressure points location will not copy but google fibromyalgia location of pressure ponts . First links has pics. Hope this helpful anyway. Phillipa
Criteria for Diagnosis
If you are devastated by symptoms of severe widespread pain and daytime exhaustion, yet your blood tests are normal, you may have fibromyalgia syndrome or chronic fatigue syndrome. Both are serious chronic illnesses that have specific criteria for diagnosis, but may be overlooked. Also, you should be aware that the distinction between fibromyalgia and chronic fatigue syndrome is "very fuzzy rather than sharp," and up to 70% of fibromyalgia patients meet the diagnosis for chronic fatigue syndrome.*Fibromyalgia Syndrome (FMS)
Routine lab tests do not detect the widespread pain of fibromyalgia. Instead, the diagnosis is made by a physical exam that takes about five minutes. When light pressure is applied to the surface of the muscles throughout the body, patients with fibromyalgia find this painful, especially at the tender points used for diagnosis.To meet the fibromyalgia criteria for diagnosis, patients must have:
A. Widespread pain in all four quadrants of their body for a minimum of three monthsB. At least 11 of the 18 specified tender points (see diagram**)
The 18 sites used for the fibromyalgia diagnosis cluster around the neck, shoulder, chest, hip, knee, and elbow regions. The finger pressure that must be applied to these areas during a "palpation" exam is roughly equivalent to the amount that causes the finger nail bed to blanch or start to become white. Over 75 other tender points have been found to exist, but are not used for diagnostic purposes.
While many chronic pain syndromes display symptoms that overlap with fibromyalgia, the 1990 American College of Rheumatology (ACR) multi-center criteria study (published in the February 1990 issue of Arthritis and Rheumatism) evaluated a total of 558 patients, of which 265 were classified as controls. These control individuals weren't your typical healthy "normals." They were age and sex matched patients with neck pain syndrome, low back pain, local tendonitis, trauma-related pain syndromes, rheumatoid arthritis, lupus, osteoarthritis of the knee or hand, and other painful disorders. These patients all had some symptoms that mimic fibromyalgia, but the trained examiners were not foiledthey hand-picked the fibromyalgia patients out of the "chronically ill" melting pot with an accuracy of 88%. Fibromyalgia is not a wastebasket diagnosis!
Although the above diagnosis focuses on tender point count, a consensus of 35 fibromyalgia experts published a report in 1996 saying that a person does not need to have the required 11 tender points to be diagnosed and treated for fibromyalgia (Wolfe F, et al. J Rheumatology 23(3):534-9, 1996). This criteria was created for research purposes and many people may still have fibromyalgia with less than 11 of the required tender points as long as they have widespread pain and many of the commonly associated symptoms below.
fatigue
irritable bowel (e.g., diarrhea, constipation, etc.)
sleep disorder (or sleep that is unrefreshing)
chronic headaches (tension-type or migraines)
jaw pain (including TMJ dysfunction)
cognitive or memory impairment
post-exertional malaise and muscle pain
morning stiffness (waking up stiff and achy)
menstrual cramping
numbness and tingling sensations
dizziness or lightheadedness
skin and chemical sensitivities
Do you meet the diagnosis for fibromyalgia?
If you meet the diagnosis for fibromyalgia, learn how to remain optimistic despite setbacks or difficulties relating to others who cannot see your pain. Join the Fibromyalgia Network to learn the latest in research, treatment, and coping news. Member benefits include:ad-free, patient-focused quarterly Fibromyalgia Network Journal
monthly eNews Alerts
physician and support group referral
toll-free support
Posted by Sigismund on March 29, 2008, at 20:55:36
In reply to Re: Fibromyalgia (?) » amyaub, posted by Quintal on March 29, 2008, at 10:55:05
is OK, but nothing to write home about.
I wonder if you can get better results doing something like Feldenkrais.
Posted by Phillipa on March 29, 2008, at 21:01:41
In reply to Tens, posted by Sigismund on March 29, 2008, at 20:55:36
Sigi what is that? Never heard of of it before. Heard of Tens machines. PJ
Posted by Sigismund on March 29, 2008, at 22:28:15
In reply to Re: Tens » Sigismund, posted by Phillipa on March 29, 2008, at 21:01:41
http://www.feldenkraisinstitute.org/
It's a system of intelligent and unusual exercises.
I'm not sure I can describe it well.
It's not like going to the gym or anything, and it's not like yoga either.
It frees you up.
Posted by Sigismund on March 29, 2008, at 22:33:46
In reply to Re: Tens, posted by Sigismund on March 29, 2008, at 22:28:15
http://www.youtube.com/watch?v=e_i5QuIqcQo
I hope someone finds this interesting.
It's one of the better exercise things.
I have a ruptured disc, so I use it to avoid pain.
Posted by FredPotter on March 30, 2008, at 17:48:23
In reply to Fibromyalgia (?), posted by Quintal on March 26, 2008, at 15:43:59
Have you ever taken a statin drug? Do you have problems with balance?
Posted by Phillipa on March 30, 2008, at 18:59:42
In reply to Feldenkrais, posted by Sigismund on March 29, 2008, at 22:33:46
Sigi I did. Thanks and watched the whole thing. Reminds me of a combo of stretching excercises. Thanks PJ
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