posted on June 15, 2002 06:58:41 PM new
Helen: Don't waste your breathe on this gender-identity disordered quack. This is 1 (2) sick Mother Trucker(s).
Would somebody not on ignore cut 'n' paste to stusi:
Do you think an appropriate response to someone on the verge of chucking it all and in total despair is to go into a diatribe on labels and hypochondria?
akt: 1)Please do find fibromyalgia support boards. 2) I once got a fractured rib from a bear hug. They can hurt for quite some time (months even) and the only treatment is LOTS of an anti-inflammatory. 3) Your doctor doesn't seem wide from the mark but a second opinion can't hurt. 4) What was the trigger event? You said you were doing well prior. 5) Don't AWFULIZE your symptoms. In other words perseverating on the pain/issue won't help matters any. In my case I understand that I lack a mechanism "normal people" have; when I'm injured the pain/spasm/knots takes on a life of it's own non-stop full speed, while a regular person would simply recover with rest or in a couple of days or whatever.
I'm taking the time to engage with you because I feel your pain and despair. However, this board is really not the place to discuss this because the experience isn't really here. Not to mention you'll run into A-holes that'll call you a hypochondriac, which I'm sure you won't see on a specific support board.
And you should feel very proud that you manage to stay there somehow for your kids. That is awesome. My kid's doctor (he was high maintence when he was younger) told me something very wise that maybe we should both listen to. She said, "On a plane they tell you to put your own oxygen mask on first before the kids. Otherwise how can you help the kids? So take care of yourself first."
It's my opinion that spending time on support boards will only offer a temporary distraction from your pain - although I'm not discounting the importance of distraction and focusing on something outside the pain.
The problem, I believe is that the list of medications that you are taking does not include an effective pain control drug. It's my opinion that you should see another doctor. Nobody should have to tolerate so much pain.
posted on June 15, 2002 08:19:45 PM new
I have fibro too. I was diagnosed with it in 1993. I couldn't find much comfort in those meds either. I just tolerate it I guess. Many people think fibro is just all in a persons head. The last I checked you can't claim it as a disibility or can you now? Just wondering I guess. I wish all you other fibro suffers the best.
posted on June 15, 2002 09:45:31 PM new
akt- If you are in that much pain ask your doctor about Neurontin. It is classified as an anti-convulsive but it blocks the transmission of pain rather well. BTW- did you have a CT scan?
posted on June 15, 2002 10:13:24 PM new
Not yet, they said my Triglycerides were high and he thinks that may have set all this off again, and before he orders more test run they want to see if these meds work, I have to go back in for some more test the middle of July.
But I do not have INS so that holds them back on the test.
I don't suffer fibro, but it is a clinically diagnosable condition and I know that there are mechanisms for the relief of the pain it brings.
As I said, find a doctor who does not share the sorts of attitudes toward patient condition exhibited by the cute little name above.
And make use of the net. You can quickly find information about the condition and the range of treatment available. You can arm yourself with accurate information sufficient to enable you to make your case with doctors you encounter and to cut through the advise given by sometimes well meaning but unqualified and ignorant people you may meet either online or otherwise.
For example, the drug recommended above, Neurontin, otherwise known as gabapentin or some such, has a range of effects which you may find to be quite uncomfortable. Using sites such as this one:
posted on June 16, 2002 07:35:04 AM new
krs- as you can be assured that I still have you on ignore, and as your good friend nycyn will assure you that the function works sporadically, I saw your last post. For you to suggest that Fibro is accurately clinically diagnosable is both irresponsible of you as an unqualified person and not quite true. When doctors can't diagnose many conditions with similar muscular symptoms they often put the patient into this category. The clinical qualification you refer to primarily consists of determining whether the patient is sensitive to touch in a percentage of trigger points. Not very scientific is it? To suggest to akt that Neurontin has more or more serious side effects than the addictive painkillers that you and so many others here seem to be so "fond" of is both irresponsible and inaccurate. If you were more familiar with the percentages of side effects of medications you would know that. I am not a physician but have done a significant amount of medical research and have had the "luxury" of being able to speak to 100's of board-certified doctors on this and many other medical issues. The things they acknowledge in private would blow your mind. Just as not every veteran,cop, priest, teacher,politician,CEO or degreed person etc. is ethical or has integrity, there are over 20,000 doctors who have had their licenses suspended or revoked. Do not believe everything you hear about this syndrome. My statements to akt were perhaps a bit insensitive but I qualified all my medical-related statements with "possible" or "ask your doctor" unlike yourself or others. BTW- Magnesium combined with Calcium has been widely accepted to help combat bodily aches and pains. The great majority of Fibro websites are self-serving fronts for all sorts of meds both ethical(prescription) and OTC.
posted on June 16, 2002 08:08:26 AM new
>>My statements to akt were perhaps a bit insensitive but I qualified all my medical-related statements with "possible" or "ask your doctor" unlike yourself or others.<<
>>krs- as you can be assured that I still have you on ignore, and as your good friend nycyn will assure you that the function works sporadically,<<
posted on June 16, 2002 08:14:27 AM new
Well gee, that's funny dr Stushi, because there are several sites which contain results derived from this:
The American College of Rheumatology 1990 Criteria
For The Classification of Fibromyalgia
History of widespread pain has been present for at least three months.
DEFINITION: Pain is considered widespread when all of the following are present:
Pain in both sides of the body
Pain above and below the waist
In addition, axial skeletal pain (cervical spine, anterior chest, thoracic spine or low
back pain) must be present. Low back pain is considered lower segment pain.
Pain in 11 of 18 tender point sites on digital palpation (NOTE: digital palpation should
be performed with an approximate force of 4 kg. A tender point has to be painful at
palpation not just "tender".
DEFINITION: Pain, on digital palpation, must be present in at least 11 of the following
18 tender point sites:
Occiput (2) - at the suboccipital muscle insertions.
Low cervical (2) - at the anterior aspects of the intertransverse spaces at C5-C7.
Trapezius (2) - at the midpoint of the upper border.
Supraspinatus (2) - at origins, above the scapula spine near the medial border.
Second rib (2) - upper lateral to the second costochondral junction.
Lateral epicondyle (2) - 2 cm distal to the epicondyles.
Gluteal (2) - in upper outer quadrants of buttocks in anterior fold of muscle.
Greater trochanter (2) - posterior to the trochanteric prominence.
Knee (2) - at the medial fat pad proximal to the joint line.
Now, if you think that that can be boiled down to " determining
whether the patient is sensitive to touch in a percentage of trigger points" then perhaps you will agree that even your brief description constitutes a syndrome, which is not a degenerative disease, bit is a condition, which word is the one I used in describing it above.
Now, as to your claim that the adverse side effects are lesser than those for the questionable psychtropic drug you'd recommend, doktor, all I can surmise is that you were unable to follow a link. That being the case I'll assure you that I am fully aware of those affects as they are detailed thusly, in the percentages which you allude to:
TABLE 1 Treatment-Emergent Adverse Event Incidence in Controlled Add-On
Trials
(Events in at Least 1% of Gabapentin Patients and Numerically More Frequent
Than in the Placebo Group)
Gabapentin*
Placebo*
N = 543
N = 378
Body System/Adverse Event
%
%
Body as a Whole
Fatigue
11.0
5.0
Weight Increase
2.9
1.6
Back Pain
1.8
0.5
Peripheral Edema
1.7
0.5
Cardiovascular
Vasodilation
1.1
0.3
Digestive System
Dyspepsia
2.2
0.5
Mouth or Throat Dry
1.7
0.5
Constipation
1.5
0.8
Dental Abnormalities
1.5
0.3
Increased Appetite
1.1
0.8
Hematologic and Lymphatic Systems
Leukopenia
1.1
0.5
Musculoskeletal System
Myalgia
2.0
1.9
Fracture
1.1
0.8
Nervous System
Somnolence
19.3
8.7
Dizziness
17.1
6.9
Ataxia
12.5
5.6
Nystagmus
8.3
4.0
Tremor
6.8
3.2
Nervousness
2.4
1.9
Dysarthria
2.4
0.5
Amnesia
2.2
0.0
Depression
1.8
1.1
Thinking Abnormal
1.7
1.3
Twitching
1.3
0.5
Coordination Abnormal
1.1
0.3
Respiratory System
Rhinitis
4.1
3.7
Pharyngitis
2.8
1.6
Coughing
1.8
1.3
Skin and Appendages
Abrasion
1.3
0.0
Pruritus
1.3
0.5
Urogenital System
Impotence
1.5
1.1
Special Senses
Diplopia
5.9
1.9
Amblyopia†
4.2
1.1
Laboratory Deviations
WBC Decreased
1.1
0.5
* Plus background antiepileptic drug therapy.
† Amblyopia was often described as blurred vision.
Other Events in More Than 1% of Patients But Equally or More Frequent in the Placebo Group
Included: Headache, viral infection, fever, nausea and/or vomiting, abdominal pain, diarrhea, convulsions,
confusion, insomnia, emotional lability, rash, acne.
Among the treatment-emergent adverse events occurring at an incidence of at least 10% of
gabapentin-treated patients, somnolence and ataxia appeared to exhibit a positive dose-response
relationship.
The overall incidence of adverse events and the types of adverse events seen were similar among men and
women treated with gabapentin. The incidence of adverse events increased slightly with increasing age in
patients treated with either gabapentin or placebo. Because only 3% of patients (28/921) in
placebo-controlled studies were identified as nonwhite (black or other), there are insufficient data to
support a statement regarding the distribution of adverse events by race.
Other Adverse Events Observed During All Clinical Trials
Gabapentin has been administered to 2074 individuals during all clinical trials, only some of which were
placebo-controlled. During these trials, all adverse events were recorded by the clinical investigators using
terminology of their own choosing. To provide a meaningful estimate of the proportion of individuals having
adverse events, similar types of events were grouped into a smaller number of standardized categories
using modified COSTART dictionary terminology. These categories are used in the listing below. The
frequencies presented represent the proportion of the 2074 individuals exposed to gabapentin who
experienced an event of the type cited on at least one occasion while receiving gabapentin. All reported
events are included except those already listed in TABLE 1, those too general to be informative, and those
not reasonably associated with the use of the drug.
Events are further classified within body system categories and enumerated in order of decreasing
frequency using the following definitions: frequent adverse events are defined as those occurring in at least
1/100 patients; infrequent adverse events are those occuring in 1/100 to 1/1000 patients; rare events are
those occurring in fewer than 1/1000 patients.
Body as a Whole: Frequent: Asthenia, malaise, face edema; Infrequent: Allergy, generalized edema,
weight decrease, chill; Rare: Strange feelings, lassitude, alcohol intolerance, hangover effect.
Hematologic and Lymphatic System: Frequent: Purpura most often described as bruises resulting
from physical trauma; Infrequent: Anemia, thrombocytopenia, lymphadenopathy; Rare: WBC count
increased, lymphocytosis, non-Hodgkin's lymphoma, bleeding time increased.
In addition to the adverse experiences reported during clinical testing of gabapentin, the following adverse
experiences have been reported in patients receiving marketed gabapentin. These adverse experiences
have not been listed above and data are insufficient to support an estimate of their incidence or to establish
causation. The listing is alphabetized: angioedema, blood glucose fluctuation, erythema multiforme, elevated
liver function tests, fever, jaundice, Stevens-Johnson syndrome.
DRUG ABUSE AND DEPENDENCE
The abuse and dependence potential of gabapentin has not been evaluated in human studies.
DRUG INTERACTIONS
Gabapentin is not appreciably metabolized nor does it interfere with the metabolism of commonly
coadministered antiepileptic drugs.
The drug interaction data described in this section were obtained from studies involving healthy adults and
patients with epilepsy.
Phenytoin: In a single and multiple dose study of gabapentin (400 mg t.i.d.) in epileptic patients (N = 8)
maintained on phenytoin monotherapy for at least 2 months, gabapentin had no effect on the steady-state
trough plasma concentrations of phenytoin and phenytoin had no effect on gabapentin pharmacokinetics.
Carbamazepine: Steady-state trough plasma carbamazepine and carbamazepine 10, 11 epoxide
concentrations were not affected by concomitant gabapentin (400 mg t.i.d.; N = 12) administration.
Likewise, gabapentin pharmacokinetics were unaltered by carbamazepine administration.
Valproic Acid: The mean steady-state trough serum valproic acid concentrations prior to and during
concomitant gabapentin administration (400 mg t.i.d.; N = 17) were not different and neither were
gabapentin pharmacokinetic parameters affected by valproic acid.
Phenobarbital: Estimates of steady-state pharmacokinetic parameters for phenobarbital or gabapentin
(300 mg t.i.d.; N = 12) are identical whether the drugs are administered alone or together.
Cimetidine: In the presence of cimetidine at 300 mg q.i.d. (N = 12) the mean apparent oral clearance of
gabapentin fell by 14% and creatinine clearance fell by 10%. Thus cimetidine appeared to alter the renal
excretion of both gabapentin and creatinine, endogenous marker of renal function. This small decrease in
excretion of gabapentin by cimetidine is not expected to be of clinical importance. The effect of gabapentin
on cimetidine was not evaluated.
Oral Contraceptive: Based on AUC and half-life, multiple-dose pharmacokinetic profiles of
norethindrone and ethinyl estradiol following administration of tablets containing 2.5 mg of norethindrone
acetate and 50 mcg of ethinyl estradiol were similar with and without coadministration of gabapentin (400
mg t.i.d.; N = 13). The Cmax of norethindrone was 13% higher when it was coadministered with
gabapentin; this interaction is not expected to be of clinical importance.
Antacid (Maalox): Maalox reduced the bioavailability of gabapentin (N = 16) by about 20%. This
decrease in bioavailability was about 5% when gabapentin was administered 2 hours after Maalox. It is
recommended that gabapentin be taken at least 2 hours following Maalox administration.
Effect of Probenecid: Probenecid is a blocker of renal tubular secretion. Gabapentin pharmacokinetic
parameters without and with probenecid were comparable. This indicates that gabapentin does not
undergo renal tubular secretion by the pathway that is blocked by probenecid.
Now, perhaps with all of your new knowledge you'll go lap some up. Evidently your quite used to lapping at the droppings of the docktors you adore so much that you share gossip with them such as described by you above.
posted on June 16, 2002 08:36:28 AM new
krs- It's not pretty but no worse than many other drugs. To the average person this may look scary, but anyone who has spent even a few minutes looking up their favorite drugs in the PDR would soon realize that most have numerous possible side effects. Have you seen or care to list the side effects for the drugs YOU recommended? Would you not think, as the deep thinker you are, that before recommending an ADDICTIVE drug that one should exhaust most other NON-ADDICTIVE possibilities? It seems that many of the people who post here are addicted to painkillers(either have stated so or talk/type like they are) and wish to share their addiction so readily with others. Many die from such addictions long after the condition for which they took the drug(s) have subsided. BTW- do some research as to the recent successes of Magnesium or Neurontin in treating Fibro-like symptoms before dismissing them, simply because the suggestion came from me.
posted on June 16, 2002 09:01:40 AM new
As it happens I have ample cause to investigate quite thoroughly each and every compound which it is proposed that I take, and do so. You might be surprised to find, given your aversion to what you stupidly capitalize as being addictive drugs, just how little addictive characteristic they have when given and taken in therapeutic dosages under the supervision of a doctor. In fact, the ones which I've mentioned, including Morphine Sulphate, have very little addictive affect. But because they are restricted you and ashcroft (your daddy?) condemn them and anyone who would use them or prescribe them.
Well, all that really remains to say to you is if you have not experienced the pain you do not know what you're talking about.
posted on June 16, 2002 09:21:37 AM new
For you to even suggest that I "condemn" painkillers and "anyone who would use or prescribe them" is not only untrue, but reeks of the type of smokescreen that you and others here are so adept at. The truth is that 1. painkillers are way too frequently prescribed for some and not frequently enough for others. 2. you seem to have a profound understanding of the obvious with regards to prescription of "therapeutic dosages under the supervision of a doctor" not being a problem. But you have tunnelvision regarding the numbers of such people who nevertheless overdose and/or get addicted. 3. You are 100% incorrect in that I have not experienced severe pain as I used to get cluster headaches, which are said by many doctors to be the worst pain known to mankind. Many have taken their own lives from this condition. I took Imitrex andFiornal(painkiller!) after trying other natural remedies first. 4. Since in your humble opinion painkillers have "very little addictive effect" how do you explain the 1000's of deaths and visits to rehab centers? 5. Your reference to Ashcroft, considering all I have said against him, was childish. But are you sure you are not related considering your recent "speaking in tongues" episode?
[ edited by stusi on Jun 16, 2002 09:24 AM ]
posted on June 16, 2002 10:29:38 AM new
Do you notice how often the lack of sleep keeps coming up in the Merck discussion of Fibro? ...."non-drug treatments are the most helpful".... NO mention of painkillers!
Massage IS mentioned.... kudos to Merck! I was SOOOO off base! LOL! A small part of integrity is knowing that some who you despise may have some info that should not automically be dismissed.
[ edited by stusi on Jun 16, 2002 10:41 AM ]
posted on June 16, 2002 10:33:49 AM new
I don't have fibro, but my friend does. On my advice, she saw my neurologist who treats me for debilitating migraines.
I am neither condeming nor supporting other comments here, I'm just adding some thoughts. [Side note: I've read many times where Dr. Dean Edell says fibro doesn't exist.] I can't agree or disagree because I've never had it. I just know my friend was quite miserable.
When I first approached my doctor about taking on my friend as a patient, I asked him, "is fibro the old "chronic Fatigue Syndrome"?". He smiled and kinda implied that it was. This dr is rather arrogant, but he was helping me with my migraines, so my friend went to him.
He put her on Effexor (sp) and exercise among other treatments. Ultimately she felt cured, but that is her story and its long.
To the original poster: I'm concerned about the number of medications you are on. With my migraines, I too was taking quite a few medications and was feeling odd and constantly sick. Some of you may remember I posted many months ago about a chronic condition I was having with hoarseness and cough and having to constantly clear my throat. Any medication I was given only added to my "sick" feeling.
Reason for my post:
Recently I was in Los Angeles visiting my father in the hospital (another post -another story) and forgot to take Zoloft for 4 days, one of my numerous medications. When I realized it, I also realized I was feeling better in general.
I know I must take synthroid (surgery - no thyroid) so I can't get rid of that medication. I also take Inderal for tremors and left over from 15 years ago when that was accepted migraine treatment. Recently I was weaned off that medication and ended up in the hospital with 179/110 BP. I'm back on inderal LA at 80mg.
Going off the Zoloft made me feel better, but I had crying jags. (my dad is dying slowly, (again, another post) so I feel its ok to cry on occasion, but this was abnormal and I couldn't stop). So I would take one zoloft then go several more days until the next crying jag when I would take another zoloft.
For the most part I'm off the zoloft, but take synthroid and inderal daily. I also dropped Depakote and several other medications that treated the chronic cough.
I actually feel better (except I've gained weight) and haven't had a migraine since 4-28. This is a miracle. I should have had at least 6 migraines since 4-28.
I don't know if it is the inderal stopping the migraines (it never did before) and considering I'm under the worst stress ever in my life (stress also is a migraine trigger) I should have daily migraines.
To the original poster: too many medications work against each other and you will find that you have a new symptom (medication caused) that you now have a new medication to counteract. Its a vicious circle.
Not my name on ebay.
posted on June 16, 2002 10:47:14 AM new
Stusi, I'm sorry to hear you used to get cluster headaches. I've heard that they are just excruciating...like having a toothache in every tooth.
posted on June 16, 2002 10:50:03 AM new
Valleygirl- great post! One of the things that doctors do not suggest often enough is simply switching from one drug to another similar one ie.- rotating drugs to avoid tolerance or addiction. That doctor had the integrity to tell you that Fibro might really be nothing more than the muscular symptoms of fatigue. Dean Edell is just one of many who doubt the existence of Fibromyalgia as a separate condition. BTW- Botox is now being successfully used for migraines.
posted on June 16, 2002 11:48:34 AM new
Valley Girl says:
>>When I first approached my doctor about taking on my friend as a patient, I asked him, "is fibro the old "chronic Fatigue Syndrome"?". He smiled and kinda implied that it was. This dr is rather arrogant, but he was helping me with my migraines, so my friend went to him.<<
Stusi responds:
>>>That doctor had the integrity to tell you that Fibro might really be nothing more than the muscular symptoms of fatigue.<<
Sigh.
OK Stusi, we surrender. You can dominate the thread.
posted on June 16, 2002 11:53:52 AM new
I guess the bottom line is still pain management. I really agree with krs that you have to 'shop' for a doctor that's understanding and will do what he can to help you get your pain under control.
If you don't want to change doctors, a good way to gain a bit of control over your own doctor is to give him a multiple choice. Go in with the names of 3 medications you think might help you, and ask him which one would be the safest for you to take. It gives them the idea you know what you're talking about and they seem more willing to help. It's worth a try.
posted on June 16, 2002 11:57:15 AM new
For those uninvolved; I've been seeing Zoloft advertised on TV now and then lately. Do not consider it, or if you do first investigate it's effects, particularly on he liver and kidneys. I wouldn't touch it with a long pole though for some time it was drug of choice within the VA medical system, much as Motrin is in Kaiser permanente. Learn to dislike drug salesmen like stusi, they have no more scruples than do the guy on the street with a nickel bag.
posted on June 16, 2002 12:04:29 PM new
nycyn- I didn't know that "thread domination" was a desirable thing. But then again, seeing as how you and Helen post in almost every thread regardless of whether or not you have anything to contribute, I guess it would be to you. And I guess you would be the one to "surrender" it when someone actually has something relevant to say.
posted on June 16, 2002 12:08:36 PM new
krs- your hypocrisy knows no bounds! First you accuse me of being anti drugs and then you accuse me of being a drug salesman! Make up your stoned mind!!!! BTW- you are right about Zoloft but its one distinguishing effect is to inhibit sexual desire. Once again you have failed to respond to direct points made about your unfounded comments. Your integrity knows no beginnings!
[ edited by stusi on Jun 16, 2002 12:17 PM ]
posted on June 16, 2002 12:41:23 PM new
Zoloft is the Valium of our times. I know too many women that have been put on it to help them with PMS. Friends I know that work in hospitals tell me that nearly all the female nurses have been put on Zoloft for one reason or another. To me that is frightening...that women are put on this "calming" ,mind altering ,drug to deal with something that is perfectly natural.
I know several people that suffer from Fibro and it is a devastating and painful disease.
Hope you find some resoloution to your pain AKT.
posted on June 16, 2002 12:51:11 PM new
It's sometimes difficult to see through the mask a pharmacuetical salesman uses to hide his tactics in denigrating those products of other makers that compete with, and are better than, those of the the maker he represents. Sometimes, but not now. Which of those conglomerate of cheats and poisoners do you represent, stushi? Give me a guess and I'd hazard "ICK", having seen your wimpering obsequious manner and innacurate, biased presentations.
She said, "On a plane they tell you to put your own oxygen mask on first before the kids. Otherwise how can you help the kids? So take care of yourself first."
.
