but I do believe fibro can be a catchall diagnosis when docs can't (sm)
Posted By: Alrighty now again on 2008-01-23
In Reply to: I knew I was gonna get zinged ;-) It's all good. - Hayseed
figure out what's wrong with you!
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I think old docs may still have them but I haven't seen younger docs with
t
Sorry about your diagnosis, have you
perhaps listened or read anything regarding Montel Williams? I know he has suffered for years now with the same and talked extensively regarding this. I think perhaps he might have written a book but not 100% about that. Talking about the flour, I started to cook something about 4 months ago and not a drop of flour here in the house. My hubby cooks and uses none and I am the only 1 who has bought sugar and only for the coffee I have- 1 cup a day. I am not diabetic but have suffered extensively with leg pain (drs diagnosed neuropathy??) but as far as treatment, nothing. Sometimes it wakes me at night, only at night, never leg pain during the day. My hubby also tries to buy organic if possible, use very little salt, mostly herbs and spices and used to drink the sodas but after our marriage a few years back, came off those eventually and water now. I do drink some occasional milk as I really love that. Gosh, I have some honey in my kitchen, have tried that in coffee before but just not the same. Don't know what else I can try... What kind of problems were you having when your MS diagnosed? I know this is usually a dx that comes in earlier life so I do not feel at all this is my problem but just wondering about yours and what do you do to alleviate some of the leg pain you talk about, i.e. heat, etc. Thanks
My diagnosis...
When I told my doctor I needed testing, had all the symptoms of a thyroid problem. Your TSH should be, hmmm say around 5.5 and mine was over 1000 so very much a problem. I was called and told immediately to see an endocrinologist. You can, if not brought under control, suffer severe problems with hypothyroidism as in hyperthyroidism, either one can be potentially fatal. I recently (about 4 months ago) had a battery of tests done and a test that is very revealing of thyroid is a thyroid peroxidase- normal 0-34 and mine 283. I am on thyroid each and every day, even as this test taken. They at first thought mine Hashimoto thyroiditis which in itself very serious. Have been diagnosed since the late 90s and have the hair loss, weight gain, dry skin but then again, as you were talking about her behavioral problems, mine can go along with aging like hers might go along with being a teenager. I had a son who when becoming a teenager tended to withdraw, sullen but I expected that from a teenager. I think some might come with the territory.
diagnosis
I would say you are constipated....
carefully review your diet, medications and get your thyroid check....
imho....
I'm sorry to hear of your diagnosis. NM
x
I wonder if that is a correct diagnosis
Her symptoms sound more like what a couple of people I know experienced with cardiac arrhythmia. I don't know the exact diagnosis, but one of them was treated with ablation and is doing well, and the other had a pacemaker and defibrillator implanted and is doing well. These women were both in their 30s when they started experiencing symptoms.
I was a military wife for a long time - there are some good doctors in the military but they can be few and far between. I hope your friend will ask to be referred to a non-military cardiologist.
Melanosis coli diagnosis
Had the above diagnosis and the physician tried to emphasize that I took laxatives and should not- HOWEVER, the last time I took them was over 40 years ago after I had my child. Has anyone else been diagnosed with this and besides the laxatives, what else could cause this? I eat a lot of olives, drink coffee, thought about the things that possibly could be the cause but SHE insisted to leave the laxatives off. Anyone else have this?
You are right about people doubting the diagnosis
I went finally to a pain clinic where when I told the physician what another physician diagnosed, the pain clinic doctor threw his eyes up to the ceiling as if to say he did not believe. I tell you what I take for symptoms like you describe (ran out this past week and I could tell the difference in a couple of days), that is over the counter glucosamine chondroitin- cheap, can get at Walmart. I too have the creaky joints, knees popping, so I know it helps those. As far as the neck pain, etc. it might be fibro- I am having thoracic injections done pretty soon- had some others done at pain clinic- if you can self-refer or get referred to pain clinic - that probably would be best because lots of others give you the runaround, don’t believe and don’t even think it a true malady. I would wish them the same except I do not wish this much pain on my worst enemy.
If you're challenging to diagnosis...
You'll need to have an independent evaluation done by a doc willing to submit the proper paperwork and possibly attend the hearing. I wouldn't bother with it if the plan is agreeable, though.
Endocring diagnosis - (___) toxicosis?
The doc says "Endocrine Diagnosis -- s/l grey phara toxicosis ???? Have no clue
Did you have contact with your friend after her diagnosis?
I ask because if she was your friend and you knew she had pancreatic cancer, why wouldn't you know her husband left her? I would imagine if a friend of mine was diagnosed with pancreatic cancer, I would visit her and call her up until she passed. I would probably know if her husband left her.
Just curious.
Docs
Have you ever been to a doctor's office and the nurse asks you some pertinent information, and you might say "I have had a TAH&BSO" or a D&C, and the nurse will say "What is that?" I just freak, I know I have been doing this for 20+ years, but sometimes I wonder if the nurse is really a nurse- yes I know some can be aids or physician taught, but I think I would just take the info down, reassure the patient and find out what it was when I left the room.
Yes I have tried to tell a doctor who may be filling in for my reg doc what has helped with migraines and severe back problems, and I swear they will give me something totally different because they think I am drug seeking. If they would just really listen or look at what you do on the occupation sheet which they make you fill out, things might go a little smoother in everyone's life.
Why would you give organs to others if you had the diagnosis of meningitis?
I find this terribly strange- personally I would never have wanted them donated out- meningitis can be a killer itself.
You didn't ask for a diagnosis. You asked for a prognosis. nm
x
ESL docs have got to be the funniest!
I have one who always says "patient lives alone at home by himself." Another one seems beyond being able to use correct medical terminology for bodily functions. All his patients "poop" and "pee." The kids also have "snotty noses."
They say docs won't treat them?
geez, I'm afraid...
You would be surprised what docs can
get away with in a hospital setting. Been there.
Anybody watch Mystery Diagnosis on Discovery Health?
Amazing how people go for YEARS without the correct diagnosis or being treated for something they don't have.
don't believe the docs....Jerry Lewis has this
Sorry for your news and I know this doesn't answer your question (yet), but I have to say just because an MD says someone has used up 2 out of 5....doesn't make it sure that's going to happen.....many people live beyond what the doctors say.....
Jerry Lewis has pulmonary fibrosis and was a mess a few years ago (and IS aging) but is doing much better he said in comparison to that time....
As for what I'd want to do? Just be with the ones I love the most and do some traveling........making sure to say the things to the loved ones prior to my demise...in other words, making sure I got it all out and cleared all the air if there might be air to clear.......and so that all questions from everyone would be answered prior to my demise, to leave nobody with unanswered questions about just about anything and everything....
Reminder: MDs are not god(s)......they have been wrong....they told my friend her father had *6 months to live max*, and he lived on another 3+ years....
My docs seem to be playing catch-up. I see it as
x
I know, most docs really don't adequately warn you (sm)
I went from having a moderately light, 4 day period, to having a very heavy 7 day period! I also had a lot of the other symptoms associated with post tubal ligation syndrome. I wish I had done more research first! I think it is better for him to have a vasectomy - far, far easier and less recovery time too.
Docs need to warn more about complications sm
Docs sometimes do not explain complications of drug interactions, they are way too rushed. Also, the drugs were prescribed in another country. The label on the Xanax said 2 mg, not strong enough to kill anyone. Lots of side effects from Ambien, although used correctly, it's a wonder drug. First time I was bluntly told I had "cancer" and needed surgery "yesterday" I couldn't sleep and Ambien 5 mg was a lifesaver to me, I went to sleep within minutes and woke up refreshed with no ill effects, it is a wonder drug to me, but many in my community have gotten into trouble with the law from mixing it with alcohol and doing terrible things. It sounds like this person was very distraught and it was an accident, pure and simple. He was a talented person who was going through so much pain. He loved his little girl so much, it must have been heart wrenching for him. I am not going to judge him, I just hope he and his family can be at peace if that is at all possible in this cruel world (for the family) and in the next (for him). God bless them all!
I think if they penalized the docs signing off
fewer people getting it. I worked an oncology office and we had people all the time wanting these forms filled out. Yes, some were legitimate, but the majority were people with anemia, thrombocytopenia or status post their cancers in complete remission. My doc never signed unless the person absolutely was entitled to it. I think if more docs got a backbone and quit signing off on these, you'd see a lot less people getting disability.
It's the normal instinct for Americans to "take what they can get", but what excuse do the docs have for signing off on it?
First off, what kinds of tests have the docs run???....sm
When my son Adam was 14, he came down with severe aches, light sensitivity, sore throat off and on, EXTREME FATIGUE, etc. His doctor suspected mono and did a Monospot to check this out, complete white count with diff, and also EB virus serologies. and Yup, he did have mono, it took a couple of months to get him over the worst. Lots of rest, good eating habits, and multivitamins is all you can do until the virus gets erradicated. And no contact sports or heavy activities, because the spleen gets very enlarged during mono and they worry about rupture with a blow, etc.
If no tests have been done, I would get a good pediatrician ASAP who will do a CBC with diff, white count, sed rate, UA, EBV serologies and Monospot, and get him diagnosed!! The ear thing may or may not be a part of this, could be a concurrent illness on its own, but if he has been this sick this long, "guessing" at the etiology is wasting time, you need to know for sure what exactly is wrong with your son to treat him properly.
Not trying to be an alarmist, but have raised two and my third is 11 right now so have been through the Streps, pneumonias, my third baby was born with vesicoureteral reflux and needed prophylactic antibiotics the first year of life (he outgrew it right after that, thank God, but we spent 8 days of he!! in the hospital as they put the 3-week old through spinal taps and ALL TYPES of tests, two weeks in hospital with my little girl at 5 years with severe double pneumonia, etc!). Hopefully, if it is mono/EBV, he will recover really quickly, but YOU also need to put your mind at rest, too! Take good care of each other, and update us, okay??? God Bless
Most docs stink these days. And they think everyone is a hypochondriac
if they can't figure out what you have. Good luck to you and I hope you feel better and you find a decent doctor (good luck with that too!)
Working my butt off, all my docs went nuts -sm
have about 180 minutes of dictation to do.......interuptions galore over the weekend so hard to work! Hope to watch the game though, we will see, definitely watching half-time as I love Tom Petty and have since I was 12! (so 30 years). Cannot wait for that especially since not sure if I will go to see him on his upcoming tour as he is coming to my area on a Sunday and kids want to go too, but they would have school the next day and the show is about 90 minutes away from me. So not sure what I am going to do yet.
I hate when the docs say foul smelling diarrhea
when does diarrhea ever not smell foul??? I also hate when they say creamy white sputum - makes me throw up in my mouth a little.
Older than stated age, pendulous breasts, and docs who...
use elderly for anyone under 70!
Please understand, being that you are younger than how long I have smoked, docs
used to ENCOURAGE it - I am sure others can remember. Doc sitting with a pack of cigarettes in his shirt pocket and suggesting it for best stress reliever. Do I blame them? No, not at all. I truly feel that cancer is such a huge money machine that medicine would be hurting poorly if a cure was actually found (or disclosed). And, as you have not smoked before, you are entirely correct in that you cannot understand.
I hear wrong dosages all day long from nurses who dictate for docs -
Maybe they are just misspeaking, maybe they really do not know? Really alarming!!!
Fibro
I got it 14 years now. Other than the lack of sleep the ebbs and flows are just sooo much fun. I take doxepin to help sleep through the night, just put me on Zoloft to take the edge off the pain that the Percocet I live off of doesn't handle anymore. At one point I went to a pain clinic and got steroid shots right in the base of the skull and all the way down my neck and shoulders, hurt like a you know what but got me over the flare and didn't get another good flare for another 5 years. They also had me on doxepin then, Paxil, ibuprofen, baclofen, and one other which I can't for the life of me remember. Oh yea it messes with your memory also. Watch your sugar intake very bad for fibro sufferers. I sit here on a heating pad all day or my back just kills me
I have fibro...
but my back doesn't hurt; however, I am sore around the bottom part of my ribs like if my 6-year-old tries to hug me and then at times when I have a flare - it seems as if my legs get really weak feeling (like jello) and then the next day they will feel sore and bruised like especially my butt; so I would think that possibly you could be having some lingering pain. Do you see a rheumatologist regularly? If so you might call and inquire and if you've not seen one in a while maybe you need to have a workup to make sure it's nothing more serious! Hope you get to feeling better soon though!
Fibro
It sounds like costochondritis to me. Have you tried an anti-inflammatory? I have fibro and I am in constant pain. Get a good massage and put some heat on it and see if that helps. Hope so. Fibro is diagnosed with several different trigger point areas. Best of luck and hope it goes away and soon!
I wonder if this is really fibro or?
I had a flare here for about a month and things seem to have become fairly quiet but now I have really bad pain in my back section including the ribs. I had some benign cysts on my kidneys and have had a follow up on those twice. Being as this is back and the pain, I just wonder if others go through this same, flare and then maybe the back continues to be sore, hurt??? Thanks
fibro
What meds help you?
Fibro
Hi,
I would try amitriptyline or Doxepin. Also avoid all sugar because you probably have yeast overgrowth like I do. I also drink Reliv products, Classic, Innergize and Fibrestore. You can check out their info at Reliv.com. A friend of mine could stop her meds after the fibro. Drink lots of water too. You might check out the guiafenesin protocol. This works for some people.
Hope all this helps.
Fibro
Sorry I meant stop her meds after the Reliv. Fibro fog here. I also have cervical spine problems with surgery so I have a double wammy. The best thing is good vitamins, lots of magnesium for the muscles. A rheumatologist can diagnose and help you. Sometimes they give Ultram too which helps.
Not Pam but have fibro too
Hey, I have extremely bad fibro too, have for the last 10 or more years. Well, at least they say it's fibro, but it doesn't come and go. The pain is always extremely bad and never ever goes away. I have days when I can barely walk or get up out of bed along with very limited activities. I can no longer do at least 50% of the things I used to do even simple house cleaning.
I went through an enormous amount of testing and saw multiple doctors who gave me worthless medications that did nothing or just made me more sick and brushed me off. Like in your post you said they are giving you a Medrol Dosepak? Why on earth would they give you that? Fibro is not an inflammatory condition and steroids will not do anything unless you have other comorbid conditions such as arthritis, lupus, etc. Steroids cause all sorts of damage to your body, and if they are not helping you or you don't have other conditions, I absolutely would not take them. Another thing they like to do is put you on NSAIDs. Again, these do absolutely nothing for the fibro and can do irreversible damage to your GI system, kidneys, etc.
The only way I can live and function to do absolutely anything is because I am on daily narcotic pain medications. It took me a long time and several physicians to finally be referred to a pain management clinic that would actually help me. It is inconvenient due to the ridiculous laws in this state regarding chronic pain patients, as I have to go once every month, but again, that's the only way I can function. So, I would definitely suggest you see a pain management specialist or a pain clinic. Regardless of what some of these ignorant doctors say, you don't have to "live with the pain," or take numerous expensive medications that just do more damage than good. It may take a while depending on where you live to find a knowledgable pain management doctor with compassion and you may have to go to several different ones until you find the right fit, but eventually hopefully you can find one. It can be very discouraging at times when you are in agony and doctor after doctor won't help you, but just don't take no for an answer. You deserve not to live a life full of pain.
Good luck to you. I really hope you find something that can provide you with some relief. 
To Fibro Too
Well, got to tell you, the shot I was given last night worked like a charm. No pain today for the first time since December. I have not picked up nor started the Dosepak but I feel 100% better. I do not have arthritis and I do not have lupus but right now I would about swear on these shots. Since the pain has eased up, now maybe I can get into some kind of exercise program because I hear that really helps, could not do that before, too much pain all over. I was told the shots not to be taken on a regular basis and understand that but on my vacation this summer you better believe I will have 1 before I leave.
Fibro - here's what I did
ok - this sounds ridiculous, but I did get a bit of results from it - enough to put on a pair of shorts in the summer. I, too, have fibro and had to stop my normal exercises (I now do pilates on a machine). I had my kids roll my legs every night with my grandmother's rolling pin. Now I don't know if this worked because it was my grandmother's rolling pin or if just any wooden or marble pin would do - it was a bit painful in the beginning, but I got used to it. They did start charging me .50 a night to do this - but we got some good laughs and my legs are okay. I would like to know what to do about my saggy knees now -
I have fibro, too.
Believe me, I feel your pain, literally. I have been misunderstood more times than I care to mention, even by family. Sometimes people think they know better than I how I feel. I have lived with this for several years, and I know what I am feeling and talking about. Actually I have always felt we have a great responsibility regarding our body and state of health; that is, to report what is going on, and most importantly to give the best history possible to our physicians. Sadly, this is still a diagnosis that is misunderstood and even questioned by some health professionals. My friend's husband looks at me every now and then and makes me go through the whole thing again after he asks me with doubt in his eye
NOW, WHAT DID YOU SAY WAS WRONG WITH YOU AGAIN?
I truly do know your frustration.
Fibro, all over
Pain every day, horrific some, tired of trying to fend for myself, no help from other physicians I have seen.
CALLING ALL MTS WITH FIBRO!!!
Hi. I am looking for some helpful hints as to working with fibro and how others of you deal with the pain and fatige, etc. Thanks in advance.
I have been diagnosed with fibro but
I have fatigue sometimes and don’t know if from that or from the hypothyroidism that I have, double duty so to speak. I have appointment this week to see what exactly is happening with me. Terrible, terrible pain for days on end- thought fibro, now not sure. I have some hydrocodone and take 1/2 pill of that when severe pain with fibro, supposed to start rehab for mild exercises but too much pain involved now with ?? I had a boss 1 time and she said she started exercising and that was the only thing that helped her. I just have had some setbacks to where I have not been able to start yet (including shingles!!). Hurt so much with the fibro and think the shingles started because of that. I can sleep at night, no problem there but some mornings unable to stay in bed because of hurting. I will give a follow up when I visit my physician this week and see what he has to say about if this is fibro, what does he think is problem, things you might do for fibro, etc.
Fibro meds
I was diagnosed in January of this year by a rheumatologist after having problems starting last August that began with a rash and my GP did a battery of tests - the rheumatologist started me on 1500 mg of Relafen (which has greatly diminished the tender areas like my hip areas), I also take 150 mg of Zoloft, 600 mg of neurontin, 50 mg of Tramadol every 4 hours as needed (which do me has not really helped the pain 100%, but it does lessen it a good bit) and I take a muscle relaxer at bedtime and sometimes during the time. These meds do not zap me and I feel more functional with them than before. I also take Halcion if I am unable to fall asleep, however, these days it seems that I am so exhausted that I have no problem sleeping as long as I am not hurting and the muscle relaxer at bedtime seems to help with that. Of course now that my inflammatory markers are at a near normal range I am walking 30 minutes a day and have begun stretching exercises 15 minutes in the morning, 15 minutes at night to help with the muscles. The rheumatologist has said that all of these will change as the fibro progresses and I age (I'm only 33) but he said if we stay on top of it it should be very tolerable for me from now on - I am thankful to my GP for the referral to this doctor because I have read of so many stories where the GP ignored the patient's complaints only putting them on powerful pain meds and not really getting to the source of the problem or telling them that there is nothing wrong or nothing they can do...I feel now that the pain is being managed, my biggest complaint is being tired at doing the simplest of things - like folding clothes - I feel that I need to rest after I do that - whereas before it was just a normal thing. My rheumatologist has stressed that sleep/rest is very important so he says when your body tells you to stop and rest - do it - whatever it is you have on your to do list can wait - otherwise you're gonna really feel bad and then nothing on your to do list will get done. I see my rheumatologist every 3 months right now and he says once I am doing okay on the meds and everything seems in check we'll go to every 6 months and then yearly until something goes out of whack and my treatment needs changing - he seems to really be on top of things.
What meds are you taking? Do you see a doctor on a regular basis?
I have fibro and think this is what is going on with the wrists...
As far as I know no carpal tunnel syndrome but my ribs are about to kill me today and I have noticed my arms, hands, fingers and the like giving me the blues. I have no pain at night, only when I lay my wrists down on my desk to type , they really hurt so bad and the elbows hurt and the arms, guess I am wearing out. If anyone else has similar problems, let me know. I took something for the fibro a little while ago and it seems to have stopped that really bad pain when I rest my wrists. Thanks
Anyone with fibro tried guaifenesin
and if so, did you get any good results? I read about this last night and want to give it a try, over the counter, no rx needed. I am so tired of being 1 big ache. Thanks!
I also have fibro, and CKD, so we might be more vulnerable.
But the episode I had made it hard to breathe. It felt like I had a band around my body from just under my breasts to just above the belly button and it was just tightened to the point where anything was painful...breathing, moving, sitting, lying down. It was just miserable, and it lasted for better than 6 months.
I had no treatment for it. I'm not sure if there is one or not.
Hope you don't have it...would not wish it on anyone!
I have been diagnosed with fibro about 9 SM
years ago. You mention the pain is in your ribs. When I was diagnosed that was not one of the key points, of which there are many. I have pain all over, really. I have very much pain in my neck, wrists, elbows, shoulders, lower back, etc. I have terrible burning and pain in my muscles in my arms and legs as well. I have advanced osteoarthritis and chronic fatigue, which can also accompany fibromyalgia, as I am sure you know. Symptoms can certainly vary from one patient to another. I wish you luck and success in your efforts to control pain. I wish I had the answer for everyone suffering daily with chronic pain.
What went away, fibro or rheumatism
NM
This is how my fibro figured out
I had not a clue when I went to the doctor, shoulders really hurting me, so sore and tender. Doc got me to lie on my stomach and started to palpate my spine. When you jump off the table with pain, then you have fibro.
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