malicu
11-18-2007, 11:52 PM
After much struggle with doctors and diagnosis over the years (migranes at 25, TMJ at 29, IBS at 30, and now FM at 34) except I really don't believe or accept the FM diagnosis.
I have always been active and in fairly good health. The symptoms of weight gain, anxiety, PMS, skin disorders, fevers, aches and pains, rashes, and a multitude of other wonkyness that started a year ago has driven me to the doctor, who sent me to a rheumatologist who says I have FM. I agree I have the trigger point thing I don't think I fit the profile of a person with FM. I asked to see an endocrinologist but MY DOCTOR REFUSED. I sincerely believe that my thyroid is under producing (2 year ago my level was 1.84, now is down to 1.3) and even with the small change is doing disruption to my body. I called the endocrinologist and convinced them to look at my paperwork, and also demanded a copy of my med file as I have caught calculation errors before in certain tests so I have learned to be cautious.
Treatment thus far - klonopin for sleeping which I HAD TO BEG FOR, referral to a sleep clinic. Myofacial (sp) release. Will be going for a CAT scan this week to investigate fat plaque in my brain (yes, I'm a bit of a fat head) ;) Can admit the klonopin is wonderful and resulted in a 70 percent improvement in level of pain and foggyness the next day. I will keep it around for the time being.
Suppliments - Fish Oil, Selenium, B12 complex, Acetyl-L-Carnitine, Malic Acic with Magnesium, a daily dose of Aleve, and a night time mix of passion flower and other natural relaxants from NOW.
My hair is starting to fall out (again, thyroid in nature I believe) but the doctor blew me off.
If anyone in the Grand Rapids, Michigan or surrounding areas has a good suggestion for a more cooperative M.D. I would be most grateful.
I have always been active and in fairly good health. The symptoms of weight gain, anxiety, PMS, skin disorders, fevers, aches and pains, rashes, and a multitude of other wonkyness that started a year ago has driven me to the doctor, who sent me to a rheumatologist who says I have FM. I agree I have the trigger point thing I don't think I fit the profile of a person with FM. I asked to see an endocrinologist but MY DOCTOR REFUSED. I sincerely believe that my thyroid is under producing (2 year ago my level was 1.84, now is down to 1.3) and even with the small change is doing disruption to my body. I called the endocrinologist and convinced them to look at my paperwork, and also demanded a copy of my med file as I have caught calculation errors before in certain tests so I have learned to be cautious.
Treatment thus far - klonopin for sleeping which I HAD TO BEG FOR, referral to a sleep clinic. Myofacial (sp) release. Will be going for a CAT scan this week to investigate fat plaque in my brain (yes, I'm a bit of a fat head) ;) Can admit the klonopin is wonderful and resulted in a 70 percent improvement in level of pain and foggyness the next day. I will keep it around for the time being.
Suppliments - Fish Oil, Selenium, B12 complex, Acetyl-L-Carnitine, Malic Acic with Magnesium, a daily dose of Aleve, and a night time mix of passion flower and other natural relaxants from NOW.
My hair is starting to fall out (again, thyroid in nature I believe) but the doctor blew me off.
If anyone in the Grand Rapids, Michigan or surrounding areas has a good suggestion for a more cooperative M.D. I would be most grateful.
Sponsor
jam338
11-19-2007, 12:28 AM
The odd symptoms, apart from fat plaque in the brain, are consistent with fibromyalgia, including thyroid problem. Some people just don't want to accept it. Its understandable as it is a horrible condition to have. Ensure your doctor has completed the *rule out* tests for other disorders with Lyme, Lupus, thyroid, and standard blood panels. Then read as much as you can. Much info on this board and elsewhere online.
malicu
11-20-2007, 12:18 AM
Why then will they not let me see an endocrinologist? They said "Since you have been diagnosed with FM, the Endo will not see you?!?" It seems like most people are working with Endos to manage FM - what is so different about me?
malicu
11-20-2007, 12:20 AM
This make me want to cry. - such an understatement.
NY 1009
11-20-2007, 09:05 AM
I too agree you have all the symptoms of fibro. But I also agree with you that you should be able to be evaluated by an endo if you'd feel more comfortable.
can you go without being referred by a doctor?
I just read that people with FM are seen by rheumatologists because this condition effects the joints, muscles,etc.
I was wondering if my thyroid was being effected too, because i"m suffering with such strange rushes of furnace like heat radiating in my body at certain times. when I get excited, angered, or anything that triggers my emotions, I get this horrible heat attack like I would get when I hit surgical menopause and I wasn't taking any estrogen to stop it.
I feel as if maybe my non steroidal antiinflammatory might be intervening with my estrogen patch, but I asked my gyno who rx'd the estrogen and she said "no".
so what's causing these horrible, disruptive flushes?
does anyone here suffer too with these flushes?
I don't have anymore medical insurance coverage due to the fact I lost my job last months because of too much absenteism, so I can't do to a dr. to find out what's causing this.
I thought endocrine system. and now that I found this post, I'm really flabergasted to see someone post a reply that FM CAN effect our thyroid,
oh, also, all my pants are becoming so tight over night, but the scale is staying the same. I"m not gaining weight number wise, but everything feels so tight. can this happen with an under active thyroid?
All these strange things beginning to effect me and I have no answers to them.
I want to know so I can fix them.
who likes having to feel like ripping their clothes off while speaking to someone when they get those heat attackes?
My chest becomes soaking wet, my face, my back. it's horrible.
My older brother told me he's worried I have some form of cancer because he too suffered with this type of sweating before he was dx'd with hodgkins lymphoma many years ago. He scared me.
I thought people with cancer got only night sweats, not also during the day?
anyway have any answers for me?
Linda
can you go without being referred by a doctor?
I just read that people with FM are seen by rheumatologists because this condition effects the joints, muscles,etc.
I was wondering if my thyroid was being effected too, because i"m suffering with such strange rushes of furnace like heat radiating in my body at certain times. when I get excited, angered, or anything that triggers my emotions, I get this horrible heat attack like I would get when I hit surgical menopause and I wasn't taking any estrogen to stop it.
I feel as if maybe my non steroidal antiinflammatory might be intervening with my estrogen patch, but I asked my gyno who rx'd the estrogen and she said "no".
so what's causing these horrible, disruptive flushes?
does anyone here suffer too with these flushes?
I don't have anymore medical insurance coverage due to the fact I lost my job last months because of too much absenteism, so I can't do to a dr. to find out what's causing this.
I thought endocrine system. and now that I found this post, I'm really flabergasted to see someone post a reply that FM CAN effect our thyroid,
oh, also, all my pants are becoming so tight over night, but the scale is staying the same. I"m not gaining weight number wise, but everything feels so tight. can this happen with an under active thyroid?
All these strange things beginning to effect me and I have no answers to them.
I want to know so I can fix them.
who likes having to feel like ripping their clothes off while speaking to someone when they get those heat attackes?
My chest becomes soaking wet, my face, my back. it's horrible.
My older brother told me he's worried I have some form of cancer because he too suffered with this type of sweating before he was dx'd with hodgkins lymphoma many years ago. He scared me.
I thought people with cancer got only night sweats, not also during the day?
anyway have any answers for me?
Linda
jam338
11-20-2007, 12:21 PM
Why then will they not let me see an endocrinologist? They said "Since you have been diagnosed with FM, the Endo will not see you?!?" It seems like most people are working with Endos to manage FM - what is so different about me?
While I do see an endocrinologist, a great one by the way, my insurance won't pay for it. The medical world referral proctol for FM seems to be to refer to a Rheumatologist, not an Endocrinologist. While some insurances will approve an Endo, mine wouldn't. I am appealing the denial, but it is not likely. I am having to pay for it out of my own pocket. Crazy isn't it?
Apart from insurance hurdle, there are others:
Currently in most of medicine FM is viewed as just a widespread muscle pain disorder. That puts it into the soft tissue realm of rheumatology; thus the referrals there. Some rheumys understand FM is much more than that; regrettably, many don't.
And, then there is the issue of Endos themselves, many (not all), have been content to have FM in Rheumy category because they don't want it. But, then again, it seems that Rheumys aren't crazy about getting stuck with it either. Endos usually receive referrals for very difficult hard to treat patients with life threatening disorders. FM is said to not be life threatening, so they (not all) quite frankly seen to think it is beneath their level and wastes valuable limited schedule time for more life threatening cases. That's understandable too, but where does that leave us. I think the families of the two FM Kevorkian cases would strongly argue the point abouth whether or not FM is life threatening.
FM is a VERY difficult disorder to treat. No one understands that more than we do. No two patients are the same. What works for one doesn't work for another. What worked for the same patient 6 months ago may not work for them now. In other words, it is a labor intensive patient clientelle with more failures than successes. Who would want to deal with that everyday? Even some Rheumys are now refusing to accept FM patients. This past summer I was approved to the Rheumatology Dept at Stanford and UCSF Hospitals in San Francisco. BOTH refused the referral stating they no longer treat Fibromyalgia!!! Usually holy grail medical institutions such as these set the trend that others start to follow; let's hope that is not what is about to start happening with other Rheumatology Depts across the nation. So, I requested a referral to Endocrinlogist who not only DOES accept FM patients, he SPECIALIZES in it, Dr. St. Amand. Then my insurance denied that request, giving me no alternatives. And, they know I am bedridden disabled. Go firgure. I guess they figure I am too ill and incapable of fighting them. They are right. Everyone says I could and should sue them, but who has energy for that? I just want to get well. I am positively putting all my energy into getting well, not into negative law suit energy. My system is far too fragile.
Today, many PCP and Rheumys work with basic thyroid issues so, only those with diagnosed and unresolved thyroid problems are likely to get authorized referrals to an Endo. My thyroid tests came back *within normal limits*. The problem is that with FM the basic thyroid tests frequently come back *within normal limits*, like everything else they test us for. But, some (not all) FM patients have discovered they do indeed have free T3/T4 imbalances. There are others on this board who are far more capable than me in explaining what that means. I can't explain, just know it is an issue for some. Hopefully, they can post on this thread where you can learn more.
First, call Endo offices in your area and see whether they even treat FM cases. If not, then you may be wasting precious valuable energy in a useless fight. With FM you MUST use your energy levels like a bank account, you only have so much and must be stingy with it or you risk flare (or worse--bedridden).
Research to get as much information as you can to validate the thyroid and FM connection, but it will have to come from holy grail medical sites or they will ignore it.
It is distressing, but try to not let it rob you of your energy. Stress/trauma/injury all put us at risk of flare so they must be kept to a minimum as much as possible.
While I do see an endocrinologist, a great one by the way, my insurance won't pay for it. The medical world referral proctol for FM seems to be to refer to a Rheumatologist, not an Endocrinologist. While some insurances will approve an Endo, mine wouldn't. I am appealing the denial, but it is not likely. I am having to pay for it out of my own pocket. Crazy isn't it?
Apart from insurance hurdle, there are others:
Currently in most of medicine FM is viewed as just a widespread muscle pain disorder. That puts it into the soft tissue realm of rheumatology; thus the referrals there. Some rheumys understand FM is much more than that; regrettably, many don't.
And, then there is the issue of Endos themselves, many (not all), have been content to have FM in Rheumy category because they don't want it. But, then again, it seems that Rheumys aren't crazy about getting stuck with it either. Endos usually receive referrals for very difficult hard to treat patients with life threatening disorders. FM is said to not be life threatening, so they (not all) quite frankly seen to think it is beneath their level and wastes valuable limited schedule time for more life threatening cases. That's understandable too, but where does that leave us. I think the families of the two FM Kevorkian cases would strongly argue the point abouth whether or not FM is life threatening.
FM is a VERY difficult disorder to treat. No one understands that more than we do. No two patients are the same. What works for one doesn't work for another. What worked for the same patient 6 months ago may not work for them now. In other words, it is a labor intensive patient clientelle with more failures than successes. Who would want to deal with that everyday? Even some Rheumys are now refusing to accept FM patients. This past summer I was approved to the Rheumatology Dept at Stanford and UCSF Hospitals in San Francisco. BOTH refused the referral stating they no longer treat Fibromyalgia!!! Usually holy grail medical institutions such as these set the trend that others start to follow; let's hope that is not what is about to start happening with other Rheumatology Depts across the nation. So, I requested a referral to Endocrinlogist who not only DOES accept FM patients, he SPECIALIZES in it, Dr. St. Amand. Then my insurance denied that request, giving me no alternatives. And, they know I am bedridden disabled. Go firgure. I guess they figure I am too ill and incapable of fighting them. They are right. Everyone says I could and should sue them, but who has energy for that? I just want to get well. I am positively putting all my energy into getting well, not into negative law suit energy. My system is far too fragile.
Today, many PCP and Rheumys work with basic thyroid issues so, only those with diagnosed and unresolved thyroid problems are likely to get authorized referrals to an Endo. My thyroid tests came back *within normal limits*. The problem is that with FM the basic thyroid tests frequently come back *within normal limits*, like everything else they test us for. But, some (not all) FM patients have discovered they do indeed have free T3/T4 imbalances. There are others on this board who are far more capable than me in explaining what that means. I can't explain, just know it is an issue for some. Hopefully, they can post on this thread where you can learn more.
First, call Endo offices in your area and see whether they even treat FM cases. If not, then you may be wasting precious valuable energy in a useless fight. With FM you MUST use your energy levels like a bank account, you only have so much and must be stingy with it or you risk flare (or worse--bedridden).
Research to get as much information as you can to validate the thyroid and FM connection, but it will have to come from holy grail medical sites or they will ignore it.
It is distressing, but try to not let it rob you of your energy. Stress/trauma/injury all put us at risk of flare so they must be kept to a minimum as much as possible.
Grapedy
11-20-2007, 07:46 PM
Getting in to see an endocrinologist and have it paid for by your insurance requires a diagnosis of Graves' disease, Cushing's or parathryroidism or non-diabetes related pancreas issues. Those are the slam dunk diagnoses. Depending on the insurance carrier, you can get referred for other things. I have never met an endo who was not a total jackass though, and I've met a lot of them in my years of working in the medical field. They're worse than surgeons IMO.
Many of them do have the mindset that Jam described. Much of what used to be handled by endos can now be successfully treated by the internist. That also is another possibility for treatment for you.
A good internist can do the very same things for you that a rheumatologist and endocrinologist can, at half the cost and without the hassle of referrals. My doctor is an internist. I have no desire to see a rheumatologist because he knows just as much about FM as they do.
Many of them do have the mindset that Jam described. Much of what used to be handled by endos can now be successfully treated by the internist. That also is another possibility for treatment for you.
A good internist can do the very same things for you that a rheumatologist and endocrinologist can, at half the cost and without the hassle of referrals. My doctor is an internist. I have no desire to see a rheumatologist because he knows just as much about FM as they do.
jam338
11-20-2007, 09:21 PM
Seems that the key is to find a doctor who has a sincere interest with experience in treating FM, regardless of what their area of specialty they may be. Try to avoid the jerks if possible, ask around about who's good in your area. There are FM sites online that feature doctor lists. That is always a good place to start even if none in your area are on the list. You can still call them and and ask if they know of anyone who is in your area. They are going to know who among their colleagues has an interest and/or provides treatment. Just a thought:)
malicu
11-21-2007, 09:57 AM
Many thanks for the replies - I was having a super bad day and it's interesting to see the content of the replies.
I obtained a copy of my med records from my internist and discovered many errors from history to description of symptoms, so I'm going back armed and ready with some more information. I also contacted an old dr. I trust in a different town and we developed an action plan of question to confront my current with. I can't imagine starting again with a new dr right now, but if I have to I will. I just need to exhaust all the possibilities.
Today is my CAT scan - I read the direct order to the doctor and it seems i have a mass of fatty tissue in the right sinus of my head. :jester: We'll see how that goes....
I obtained a copy of my med records from my internist and discovered many errors from history to description of symptoms, so I'm going back armed and ready with some more information. I also contacted an old dr. I trust in a different town and we developed an action plan of question to confront my current with. I can't imagine starting again with a new dr right now, but if I have to I will. I just need to exhaust all the possibilities.
Today is my CAT scan - I read the direct order to the doctor and it seems i have a mass of fatty tissue in the right sinus of my head. :jester: We'll see how that goes....