Aa
Somatic illness v real illness - What's What? (long)
Hello -
First a brief history. I am an incest survivor and a survivor of severe physical and emotional abuse. I have had several bouts of counseling on a prn, short term basis for this as well as having had some AMAC group support for a few years. I have mild to moderate problems with dissociation. In the past I have had problems with depression and anxiety. My current dx is Bipolar II, depression, anxiety and my doc believes there may be a somatic component.
In the past 5 years I have had a series of health problems beginning withand hysterectomy, being diagnosed with asthma and a terrible flare of daily migraines and resulting in a great deal of prednisone therapy over 3 of those years. The prednisone caused me to gain a significant amount of weight and I had a lot of problems with tapering off of steroids each time I used them. I have been off of oral steroids for almost 2 years and continue to maintain a Cushingoid body type. I also have very delicate skin now that bruises easily and some problems with low blood sugar. Four years ago I began to develop severe arthritic symptoms each time I tapered off of prednisone in the absense of any arthritis showing up on x-rays. When I began a new burst, the arthritic symptoms would go away. There was accompanying muscle pain and I would also develop severe pitting edema AFTER DISCONTINUING a burst of prednisone. This would usually go away when I resumed taking steroids. In the almost 2 years since I have refused oral steroids, I continue to have these symptoms on a flare and remission basis. I am currently experiencing my longest flare, since May of 1999. I am in pain constantly and exercise is impossible because of pain. We have recently discovered that my one consistant lab that is way off is a low albumin level (2.5 - 3.2) and it stays low regardless of dietary therapy. I also frequently have a high sed rate. Liver, kidney and heart problems have been ruled out although my doctor is currently monitoring them on a regular basis. I also have confirmed high blood pressure, obesity, lymphocytic colitis, Reynaud's, fibromyalgia and have recently had successful surgery for GERD. I am 39 yrs. old, have had multiple GYN related problems and surgeries including cone biopsy and a hysterectomy just prior to all of these problems. It is presumed that my remaining ovary is functioning because I frequently have painful cysts on it.
It was obvious early on that whatever this is often is accompanied by severe depression and some anxiety. Personally, I believe this is because I have a condition that causes painful symptoms and has severely limited my physical activity and consequently my whole life. A previous doctor made a psych referral assuming that this might be a somatic illness. That was long before my new primary doctor was able to find unusual lab results that we believe are somehow tied to this.
While my primary care doctor believes there is some physical illness involved, possibly an autoimmune type of illness, my psych doc still believes that a large part of this is somatic. He has increased my Wellbutrin to 450 mg from 300 mg in the last 4 months. Also, over the past 3 years I have gone from 750 mg of Depakote per day to 4,000 mg per day and my levels remain pretty low. Every couple of months we discover my levels have dropped again, I can usually tell by my ability to keep my temper and then we check my blood level, and we increase by 250 - 500 mg. Of course we continue to check liver function after each increase.
My psych seems stumped about why my blood level of Depakote continues to drop and we need to keep increasing the dose. He offers no explaination and says we will continue to increase it to keep it within the theraputic range. My weight continues to increase by a few pounds every six months. I am incredibly embarassed by it and but it has not increased enough to explain the drops in Depakote blood level. I also recently added doxepine in the hopes of improving sleep at night. It does not appear to be getting me to sleep any earlier but does make me groggy all the next day. He also had hopes it would help with the pain but it hasn't.
I am soooo frustrated. The constant pain is difficult to live with and depressing by itself. No amount of medication seems to be working for that. Additionally, having an illness that has no name and a psych that seems incredulous of the physical symptoms is painful. He honestly believes that all I have to do is get off my tail and exercise. He doesn't understand that even a simple walk is so intensely painful it brings me to tears and causes additional daily pain for up to a week afterwards.
I have had the same problem in the past from medical doctors who know anything about my history as an abuse survivor. I went through years of pain caused by undiagnosed endometriosis until I saw a new doctor who at least thought to look. I also recently had accute appendecitis and was in the hospital for over 48 hours, because I refused to be sent home, before it was diagnosed. It wasn't till my GI decided to do a colonoscopy that they believed me. At one point a nurse thought I was med-seeking. I had been having pain in that area for years and my surgeon said that my case was the best evidence he had ever seen of a true case of chronic appendicitis based on the amount of scarring and adhesions he had to go through to get it out. The night I was admitted I was in so much pain I couldn't walk, I had a fever, an elevated white cell count, lrq abdominal pain, rebound, etc, etc, etc and they STILL didn't believe me.
I guess I am just really stumped here. I can't imagine how a somatic illness could cause these very real symptoms that can be seen, show up on lab tests and cause so much pain. There is no way you can fake pitting edema, especially when each time it has been noted, they have checked my blood sodium and done a urinalisis. My husband and kids could easily testify to the amount of chicken breast and egg whites I eat just to try and keep my albumine level near 3.0. I can't imagine how anyone could fake a high sed rate or positive ige. How do you fake asthma on a spirometer test or fake a chest full of gunk? Please tell me what part of this could be somatic? If I could know that, maybe I could figure the rest of this out.
Any insight you could give me would be helpful. It's my honest suspicion that just because I am a survivor of abuse, it is assumed that I suffer from somatic illness. I belong to an HMO where any doctor I see can view my entire file so even though they offer a second opinion, any doctor I see has access to my file and could be swayed by a prior dx. I can't be seen outside of my HMO for financial reasons.
Konnie
First a brief history. I am an incest survivor and a survivor of severe physical and emotional abuse. I have had several bouts of counseling on a prn, short term basis for this as well as having had some AMAC group support for a few years. I have mild to moderate problems with dissociation. In the past I have had problems with depression and anxiety. My current dx is Bipolar II, depression, anxiety and my doc believes there may be a somatic component.
In the past 5 years I have had a series of health problems beginning withand hysterectomy, being diagnosed with asthma and a terrible flare of daily migraines and resulting in a great deal of prednisone therapy over 3 of those years. The prednisone caused me to gain a significant amount of weight and I had a lot of problems with tapering off of steroids each time I used them. I have been off of oral steroids for almost 2 years and continue to maintain a Cushingoid body type. I also have very delicate skin now that bruises easily and some problems with low blood sugar. Four years ago I began to develop severe arthritic symptoms each time I tapered off of prednisone in the absense of any arthritis showing up on x-rays. When I began a new burst, the arthritic symptoms would go away. There was accompanying muscle pain and I would also develop severe pitting edema AFTER DISCONTINUING a burst of prednisone. This would usually go away when I resumed taking steroids. In the almost 2 years since I have refused oral steroids, I continue to have these symptoms on a flare and remission basis. I am currently experiencing my longest flare, since May of 1999. I am in pain constantly and exercise is impossible because of pain. We have recently discovered that my one consistant lab that is way off is a low albumin level (2.5 - 3.2) and it stays low regardless of dietary therapy. I also frequently have a high sed rate. Liver, kidney and heart problems have been ruled out although my doctor is currently monitoring them on a regular basis. I also have confirmed high blood pressure, obesity, lymphocytic colitis, Reynaud's, fibromyalgia and have recently had successful surgery for GERD. I am 39 yrs. old, have had multiple GYN related problems and surgeries including cone biopsy and a hysterectomy just prior to all of these problems. It is presumed that my remaining ovary is functioning because I frequently have painful cysts on it.
It was obvious early on that whatever this is often is accompanied by severe depression and some anxiety. Personally, I believe this is because I have a condition that causes painful symptoms and has severely limited my physical activity and consequently my whole life. A previous doctor made a psych referral assuming that this might be a somatic illness. That was long before my new primary doctor was able to find unusual lab results that we believe are somehow tied to this.
While my primary care doctor believes there is some physical illness involved, possibly an autoimmune type of illness, my psych doc still believes that a large part of this is somatic. He has increased my Wellbutrin to 450 mg from 300 mg in the last 4 months. Also, over the past 3 years I have gone from 750 mg of Depakote per day to 4,000 mg per day and my levels remain pretty low. Every couple of months we discover my levels have dropped again, I can usually tell by my ability to keep my temper and then we check my blood level, and we increase by 250 - 500 mg. Of course we continue to check liver function after each increase.
My psych seems stumped about why my blood level of Depakote continues to drop and we need to keep increasing the dose. He offers no explaination and says we will continue to increase it to keep it within the theraputic range. My weight continues to increase by a few pounds every six months. I am incredibly embarassed by it and but it has not increased enough to explain the drops in Depakote blood level. I also recently added doxepine in the hopes of improving sleep at night. It does not appear to be getting me to sleep any earlier but does make me groggy all the next day. He also had hopes it would help with the pain but it hasn't.
I am soooo frustrated. The constant pain is difficult to live with and depressing by itself. No amount of medication seems to be working for that. Additionally, having an illness that has no name and a psych that seems incredulous of the physical symptoms is painful. He honestly believes that all I have to do is get off my tail and exercise. He doesn't understand that even a simple walk is so intensely painful it brings me to tears and causes additional daily pain for up to a week afterwards.
I have had the same problem in the past from medical doctors who know anything about my history as an abuse survivor. I went through years of pain caused by undiagnosed endometriosis until I saw a new doctor who at least thought to look. I also recently had accute appendecitis and was in the hospital for over 48 hours, because I refused to be sent home, before it was diagnosed. It wasn't till my GI decided to do a colonoscopy that they believed me. At one point a nurse thought I was med-seeking. I had been having pain in that area for years and my surgeon said that my case was the best evidence he had ever seen of a true case of chronic appendicitis based on the amount of scarring and adhesions he had to go through to get it out. The night I was admitted I was in so much pain I couldn't walk, I had a fever, an elevated white cell count, lrq abdominal pain, rebound, etc, etc, etc and they STILL didn't believe me.
I guess I am just really stumped here. I can't imagine how a somatic illness could cause these very real symptoms that can be seen, show up on lab tests and cause so much pain. There is no way you can fake pitting edema, especially when each time it has been noted, they have checked my blood sodium and done a urinalisis. My husband and kids could easily testify to the amount of chicken breast and egg whites I eat just to try and keep my albumine level near 3.0. I can't imagine how anyone could fake a high sed rate or positive ige. How do you fake asthma on a spirometer test or fake a chest full of gunk? Please tell me what part of this could be somatic? If I could know that, maybe I could figure the rest of this out.
Any insight you could give me would be helpful. It's my honest suspicion that just because I am a survivor of abuse, it is assumed that I suffer from somatic illness. I belong to an HMO where any doctor I see can view my entire file so even though they offer a second opinion, any doctor I see has access to my file and could be swayed by a prior dx. I can't be seen outside of my HMO for financial reasons.
Konnie
Dear Konnie,
It must be difficult and frustrating to suffer with so many complaints for so long.
It is not unusual for patients to suffer both psychiatric and medical complaints. Many of the conditions you mention are medical. I cannot give you a diagnosis, but it appears that you have bonefide medical illnesses.
It is also often the case that psychiatric symptoms, especially depression and anxiety can aggravate medical conditions. This is especially true in chronic pain conditions, in which the depression aggravates the pain, and the pain exacerbates the depression.
It is also important that your physician conduct the necessary labs and investigations, to make certain a medical illness is not missed.
In any HMO you are allowed a second opinion. If you feel your current psychiatrist is missing something, or is not listening to your concerns, you may ask for another opinion. I would discuss this with your current psychiatrist. Second opinions often help get things back on track. A good physician will welcome it.
Best Wishes,
HFHS M.D.-SW
*Kewords: Psychosomatic Disorder
Konnie-
Are you aware that Depakote is known to cause considerable weight gain in a lot of people taking it?? Just wanted to throw that out incase you didn't know that!
-Debra
Are you aware that Depakote is known to cause considerable weight gain in a lot of people taking it?? Just wanted to throw that out incase you didn't know that!
-Debra
Konnie-
Are you aware that Depakote is known to cause considerable weight gain in a lot of people taking it?? Just wanted to throw that out incase you didn't know that!
-Debra
Are you aware that Depakote is known to cause considerable weight gain in a lot of people taking it?? Just wanted to throw that out incase you didn't know that!
-Debra
Konnie,
I feel for you and I hate that you have struggled so hard and for so long. You ask what the difference is between real and somatic illness and which you are suffering from. I'm no doctor, but personal experience leads me to suggest it's probably a little bit of both. You clearly have some significant medical problems that need to be addressed by a competent physician, but also some residual psychiatric issues that may sometimes exacerbate your condition, and at other times be exacerbated by it (for example, increased depression due to weight gain and other symptoms, etc.)
I believe it's hard to get anywhere if you don't have a trusting relationship with your psych and that may be a place to start. It's okay sometimes to switch therapists or ask for a consult and if your therapist isn't open to it, I encourage you to feel free to express your concern. Your psych needs to be offering you clear, understandable explanations about your pharmacological treatment - period.
Second, I think once you have established (or re-established) a good relationship with a psych, you can enlist his/her support in communicating your medical concerns to your health care givers. I believe that in a case like yours, your psych and your doc MUST be willing to coordinate their efforts in your best interests. Your docs may be looking in your file and not believing you, but your psych might be able to help them understand where you are in your recovery (particularly when you're relatively stable), and remind the doctor that your psychiatric health is your psych's responsibility.
What sucks is there will always be people who won't believe you - about your history, about your symptoms, about your needs, about a lot of stuff. You need to become your own fiercest advocate and insist upon appropriate health care. You are insured so it is something you should demand. These docs should be aware that they may be exposing themselves to liability - and if they don't, remind them.
Anyway, I'm not a doctor or a shrink - just someone struggling with my own mental illness. But that's what I think.
Good Luck,
Toby
I feel for you and I hate that you have struggled so hard and for so long. You ask what the difference is between real and somatic illness and which you are suffering from. I'm no doctor, but personal experience leads me to suggest it's probably a little bit of both. You clearly have some significant medical problems that need to be addressed by a competent physician, but also some residual psychiatric issues that may sometimes exacerbate your condition, and at other times be exacerbated by it (for example, increased depression due to weight gain and other symptoms, etc.)
I believe it's hard to get anywhere if you don't have a trusting relationship with your psych and that may be a place to start. It's okay sometimes to switch therapists or ask for a consult and if your therapist isn't open to it, I encourage you to feel free to express your concern. Your psych needs to be offering you clear, understandable explanations about your pharmacological treatment - period.
Second, I think once you have established (or re-established) a good relationship with a psych, you can enlist his/her support in communicating your medical concerns to your health care givers. I believe that in a case like yours, your psych and your doc MUST be willing to coordinate their efforts in your best interests. Your docs may be looking in your file and not believing you, but your psych might be able to help them understand where you are in your recovery (particularly when you're relatively stable), and remind the doctor that your psychiatric health is your psych's responsibility.
What sucks is there will always be people who won't believe you - about your history, about your symptoms, about your needs, about a lot of stuff. You need to become your own fiercest advocate and insist upon appropriate health care. You are insured so it is something you should demand. These docs should be aware that they may be exposing themselves to liability - and if they don't, remind them.
Anyway, I'm not a doctor or a shrink - just someone struggling with my own mental illness. But that's what I think.
Good Luck,
Toby
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