Hi
I joined this site in Feb 2005 after experiencing some "strange" symptoms which I had no idea what the cause was. It all started in Oct 2004 with severe calf cramping/twitching. I was sent to a neurologist who gave me an EMG and MRI. Both were normal.
In Nov 2004 I experienced bad flu symptoms followed by severe joint pain in my hands and fingers. Next came severe chronic fatigue/exhaustion. I then began having night sweats and difficulty sleeping. My GP said well you are 49 so it must be menopause. He did the hormone panel and they were found to be in the peri stage.
June 2005 I was still having the severe fatigue along with other various symptoms which would come and go. GP said you have CFS too. So I accepted that and just went home to try and get through this.
Dec 2005 I was sent to another neurologist for a spinal tap, more MRI's and a CT scan. All normal. I was told I was just menopausal and to just go home and live with it.
Feb 2006 went back to the GP and told him something else is wrong and I know I am sick. He told me to see a Gyn and get checked out. I was told to join a CFS support group.
It seemed as though other people on the site were getting over some of their symptoms and I wasn't improving at all. I then knew I had to do something.
My MIL found a doctor close by that was a specialist in chronic fatigue. It took me months to get in to see him. Aug 2006 I had my appointment. He looked over my huge file of medical records and my questionnaire. He said to me that he thought I had Lyme. I had been tested before but not with the "reliable" test.
So this won't become too long I was found to be positive for Lyme Disease in Nov 2006 along with severe adrenal dysfunction. I now have chronic Lyme which I am taking huge amounts of antibiotics for. It could take a year or more to even begin feeling better.
I thought I was crazy and losing my mind. I guess I wanted to write this so no one will ever let their doctor brush them off. I could write a book about all the things that happened to me during the past 2 years. If you think it is something more than peri then persue it until you get results. I wish I hadn't waited so long but I trusted the doctors I saw and I honestly think that because I was 49 when all my symptoms started it was just easy for them to say it was all menopause. I know that some of the symptoms were but I knew I was sick with something more.
Thanks to everyone who gave me much needed support especially in the beginning. I am now trying to get well and hopefully I will. It has been a long and extremely difficult 2 years. I made some great friends on this site and I am so very thankful for that.
Kim
Full Version: It wasn't just perimenopause symptoms
Hi Kim, Another Kim here! I have had ME since my mid twenties and am now fifty. It has stolen a huge portion (most of really) my life. Some of my tests have been abnormal, but the gold standard MRI was negative ...so not MS.
When I was first ill I was in hospital, too weak to stand and couldn't swallow or urinate. They said MS, but later ME. You are right in my opinion that the symptoms of nervous system dysfunction are very
severe. Some GP's are too quick to give the label of ME/CFS...Neurologist's seem better able to realize that it is not just post flu malaise.
(((((Hug's to you))))))) and I hope there is light for you at the end of the tunnel. Having any illness and then menopause is way too much for anyone.
When I was first ill I was in hospital, too weak to stand and couldn't swallow or urinate. They said MS, but later ME. You are right in my opinion that the symptoms of nervous system dysfunction are very
severe. Some GP's are too quick to give the label of ME/CFS...Neurologist's seem better able to realize that it is not just post flu malaise.
(((((Hug's to you))))))) and I hope there is light for you at the end of the tunnel. Having any illness and then menopause is way too much for anyone.
Seahorse,
I'm really, really glad you posted this.
You are right, that we must be our own best advocates - WE KNOW our bodies as no one else does.
I have watched you despair and try to get help again and again. You're a courageous woman, for it couldn't have been easy to keep pursuing answers while at the same time suffering from severe fatigue. BRAVO to you for your persistence, and your dedication to your own recovery.
You are inspirational.
(((HUGS)))
JJ
I'm really, really glad you posted this.
You are right, that we must be our own best advocates - WE KNOW our bodies as no one else does.
I have watched you despair and try to get help again and again. You're a courageous woman, for it couldn't have been easy to keep pursuing answers while at the same time suffering from severe fatigue. BRAVO to you for your persistence, and your dedication to your own recovery.
You are inspirational.
(((HUGS)))
JJ
Seahorse,
Thank you for posting this. It took incredible perseverance and courage to not take "meno" for an answer. It is so very hard to know what we need to live with versus what is really not right.
I am so sorry you have had to suffer needlessly. I hope the treatment isn't too hard on you and that you are able to feel yourself again as quickly as possible.
Thank you for posting this. It took incredible perseverance and courage to not take "meno" for an answer. It is so very hard to know what we need to live with versus what is really not right.
I am so sorry you have had to suffer needlessly. I hope the treatment isn't too hard on you and that you are able to feel yourself again as quickly as possible.
Kim,
That is such a great message - don't let your doctor brush you off! They make it so hard though, don't they? When symptoms persist and you don't yet have an answer that makes sense, and your doctor really does not have a clue (though he may not tell you that!), he brushes it off as nothing serious and takes no action. When you keep going back, it makes you feel like you are the one that is just being unreasonable and a pest. I have felt that way so many times, but could not live with having things going on without explanation.
Someone told me a long time ago that each of us has to be our own health advocates. If we don't get a satisfactory answer, we need to persist because we are entitled to one. Easier said than done, but I do live by that.
I think the other important message in your story is not to assume that everything you are experiencing is due to menopause. Menopausal symptoms can overlap with so many different diseases and conditions and in fact, that drop in estrogen often triggers real issues. Everything outside of the normal hot flashes, night sweats, etc "normal" sorts of meno things should get checked out before assuming that it's hormone related.
That is such a great message - don't let your doctor brush you off! They make it so hard though, don't they? When symptoms persist and you don't yet have an answer that makes sense, and your doctor really does not have a clue (though he may not tell you that!), he brushes it off as nothing serious and takes no action. When you keep going back, it makes you feel like you are the one that is just being unreasonable and a pest. I have felt that way so many times, but could not live with having things going on without explanation.
Someone told me a long time ago that each of us has to be our own health advocates. If we don't get a satisfactory answer, we need to persist because we are entitled to one. Easier said than done, but I do live by that.
I think the other important message in your story is not to assume that everything you are experiencing is due to menopause. Menopausal symptoms can overlap with so many different diseases and conditions and in fact, that drop in estrogen often triggers real issues. Everything outside of the normal hot flashes, night sweats, etc "normal" sorts of meno things should get checked out before assuming that it's hormone related.
Hey Pixie
How are you?? Happy 2007 to you and your family. I wrote the message also because I started to feel like I was the crazy one. It got to the point where I didn't even want to tell him anything for fear that he would really think I was nuts. He wasn't LISTENING to me. I wish oh how I wish I had found another doctor earlier.
I knew I was sick and even though it took a while I finally found a doctor who knew what to do. I mean he treats people with my symptoms all the time. I am still pretty sick but he told me it would take time to even feel a slight difference. I am looking at a long time but I can deal with it. If I only knew then what I know now...
Go with your instincts. We know our bodies and just because we are all in the peri age the doctors must not assume that is the cause. Ladies, make sure the doctor hears what you are saying. They seem to be coming to conclusions even before we are finished speaking. Thanks for posting and I hope you are doing great!
Kim
How are you?? Happy 2007 to you and your family. I wrote the message also because I started to feel like I was the crazy one. It got to the point where I didn't even want to tell him anything for fear that he would really think I was nuts. He wasn't LISTENING to me. I wish oh how I wish I had found another doctor earlier.
I knew I was sick and even though it took a while I finally found a doctor who knew what to do. I mean he treats people with my symptoms all the time. I am still pretty sick but he told me it would take time to even feel a slight difference. I am looking at a long time but I can deal with it. If I only knew then what I know now...
Go with your instincts. We know our bodies and just because we are all in the peri age the doctors must not assume that is the cause. Ladies, make sure the doctor hears what you are saying. They seem to be coming to conclusions even before we are finished speaking. Thanks for posting and I hope you are doing great!
Kim
Seahorse,
I have the same symptoms as you have, and it started at 49 too: muscle and joint pain, tightness and stiffness, flu symptoms, fatgiue, etc, etc. They come and go, many women on this site have similar symptoms too.
I can believe in adrenal insufficiency to some extend, but Lyme desease arises from a tick bite that is infected with B. burgdorferi bacteria. The tick also must be attached to your body for 36-48 hours in order to trasmit Lyme desease bascteria. I am a bit sceptical about "reliable" tests and would think twice before taking huge amounts of antibiotics, unless you are positively been beaten by a tick back then.
JMO
I have the same symptoms as you have, and it started at 49 too: muscle and joint pain, tightness and stiffness, flu symptoms, fatgiue, etc, etc. They come and go, many women on this site have similar symptoms too.
I can believe in adrenal insufficiency to some extend, but Lyme desease arises from a tick bite that is infected with B. burgdorferi bacteria. The tick also must be attached to your body for 36-48 hours in order to trasmit Lyme desease bascteria. I am a bit sceptical about "reliable" tests and would think twice before taking huge amounts of antibiotics, unless you are positively been beaten by a tick back then.
JMO
I WAS bitten by a tick in September 2004 thanks to my cat. I just never thought of Lyme disease. When the first test came back negative I didn't think anything of it but continued to be very sick. I was re tested in September 2006 from Igenex Lab in California and was positive with 5 bands showing Lyme. My T cell count was 21. I have copies of both my labs. I am seeing a LLMD who knows what he is doing with my treatments. I don't think any doctor would give someone these massive amounts of antibiotics just because...and I wouldn't take them. I thought maybe by writing about my experience would help someone else out. I am going through meno too. I just happen to have been infected by LYME also.
Kim, I have have many of your symptoms and we have spoke about this before. I had read about Igenex Lab in California and even order their lab kit>>>took it to my doctor about 3 years ago. Over the years I have bitten by many deer ticks, once I had a tick bite with a big red spot and was teated with antibiotics for 6 weeks.
Anyway my doctor told me if I wanted to waste my money to go ahead and send them blood samples, 100% of thier labs come back positive for lymes and they where also under investigation. I did at the time find a report about it...
Sometime I wish I would had went ahead and send them blood and been treated with antibiotics. Not sure if my doctor would had consented to doing the long term treatment tho.
Kim the most important thing?? Are you feeling better? keep me posted @ this time I'm pretty much willing to do anything!
Anyway my doctor told me if I wanted to waste my money to go ahead and send them blood samples, 100% of thier labs come back positive for lymes and they where also under investigation. I did at the time find a report about it...
Sometime I wish I would had went ahead and send them blood and been treated with antibiotics. Not sure if my doctor would had consented to doing the long term treatment tho.
Kim the most important thing?? Are you feeling better? keep me posted @ this time I'm pretty much willing to do anything!
Kim,
Thank goodness you found a solution at the end! I'm sick of trying to get any doc to hear me. I'm 45 & have all those symptoms of heart palps, debilitating fatigue, anxiety & depression, but psych chooses to focus only on anxiety & depression, GP treats my symptoms in isolation - acid reflux pills for heart palps, obgyn thinks i'm neurotic. well, i finally initiated some saliva tests from aerob labs & they indicate i show symptoms of adrenal fatigue, low progesterone, estrogen...
when i called my GP to have a second opinion about it, he had me do bloodwork for iron, thyroid issues, electrolytes, magnesium etc... I don't think he has a clue what to look for. i'm now waiting to see a new gyn who will work with me to doublecheck the saliva tests & see what can help alleviate my symptoms.
i've been having low BP, always feeling cold, blood sugar imbalances etc. my perimeno is triggered by the chronic stress i'm under and hence my adrenal fatigue. it finally clicked. i have such a hard time getting out of bed to go to work & don't have energy to do anything, cook or shower.
yes, it's more than just meno sometimes because everything is so closely linked to our hormones.
kollette
Thank goodness you found a solution at the end! I'm sick of trying to get any doc to hear me. I'm 45 & have all those symptoms of heart palps, debilitating fatigue, anxiety & depression, but psych chooses to focus only on anxiety & depression, GP treats my symptoms in isolation - acid reflux pills for heart palps, obgyn thinks i'm neurotic. well, i finally initiated some saliva tests from aerob labs & they indicate i show symptoms of adrenal fatigue, low progesterone, estrogen...
when i called my GP to have a second opinion about it, he had me do bloodwork for iron, thyroid issues, electrolytes, magnesium etc... I don't think he has a clue what to look for. i'm now waiting to see a new gyn who will work with me to doublecheck the saliva tests & see what can help alleviate my symptoms.
i've been having low BP, always feeling cold, blood sugar imbalances etc. my perimeno is triggered by the chronic stress i'm under and hence my adrenal fatigue. it finally clicked. i have such a hard time getting out of bed to go to work & don't have energy to do anything, cook or shower.
yes, it's more than just meno sometimes because everything is so closely linked to our hormones.
kollette
kollette
I had the 24 hour adrenal saliva done in October. I also had the urine test done at the same time. I was so low in cortisol that it would barely graph. That was when the doctor also suspected Lyme so I was tested for that a month later. I was also tested for thyroid and that was a little low. It is hard to find a doctor that will really listen. My former GP did the blood cortisol and that is basically useless. I of course didn't know that at the time. It is hard when you know something else is going on but really don't know what to do. I was clueless when all this was happening. I didn't know what tests should be done.
I hope you find some relief too. I am only taking 7.5mg of cortef for the adrenals. It is a very low dose but he doesn't want to give me any more than that. You might want to go online and read about adrenal fatigue/exhaustion. There isn't much that can be done except a good diet and supplements and time. Good luck with your tests.
Kim
Snowmoon
I have to disagree with you about the Igenex Lab. They are one of the most accurate in the US for Lyme testing. Not all their tests come out positive. I am a member of a Lyme site and at least 60 percent of the people come up with negative tests. The CDC says you have to have 5 positive bands to be qualified as having Lyme. Most people have 2 or 3 positive bands. I don't know what else they do there. You can go online to any reputable Lyme site and read about it. I also had the CD-57 test done which you probably have never heard of. It measures the T-cells you have. The only thing that supresses T-cells is the lyme spirochete. Most Lyme patients have a 60. Normal is 200-350. Mine is 21. The doctor I am seeing is a specialist in Lyme and I can guarantee you he would not have me taking massive doses of antibiotics for no reason. I am not really sure what to say. So alot of symptoms match alot of illnesses. Thank goodness I found a MD who was just smart enough to do the right tests on me. I just am not going to defend my treatment or the diagnosis. I know how sick I am and getting better is the only thing I care about right now. So if you want to really inform yourself about Lyme then read up on it. I did and now I am educated about the illness and my treatment. Lyme is nasty and I don't want it doing any more damage to my body. Kim
I had the 24 hour adrenal saliva done in October. I also had the urine test done at the same time. I was so low in cortisol that it would barely graph. That was when the doctor also suspected Lyme so I was tested for that a month later. I was also tested for thyroid and that was a little low. It is hard to find a doctor that will really listen. My former GP did the blood cortisol and that is basically useless. I of course didn't know that at the time. It is hard when you know something else is going on but really don't know what to do. I was clueless when all this was happening. I didn't know what tests should be done.
I hope you find some relief too. I am only taking 7.5mg of cortef for the adrenals. It is a very low dose but he doesn't want to give me any more than that. You might want to go online and read about adrenal fatigue/exhaustion. There isn't much that can be done except a good diet and supplements and time. Good luck with your tests.
Kim
Snowmoon
I have to disagree with you about the Igenex Lab. They are one of the most accurate in the US for Lyme testing. Not all their tests come out positive. I am a member of a Lyme site and at least 60 percent of the people come up with negative tests. The CDC says you have to have 5 positive bands to be qualified as having Lyme. Most people have 2 or 3 positive bands. I don't know what else they do there. You can go online to any reputable Lyme site and read about it. I also had the CD-57 test done which you probably have never heard of. It measures the T-cells you have. The only thing that supresses T-cells is the lyme spirochete. Most Lyme patients have a 60. Normal is 200-350. Mine is 21. The doctor I am seeing is a specialist in Lyme and I can guarantee you he would not have me taking massive doses of antibiotics for no reason. I am not really sure what to say. So alot of symptoms match alot of illnesses. Thank goodness I found a MD who was just smart enough to do the right tests on me. I just am not going to defend my treatment or the diagnosis. I know how sick I am and getting better is the only thing I care about right now. So if you want to really inform yourself about Lyme then read up on it. I did and now I am educated about the illness and my treatment. Lyme is nasty and I don't want it doing any more damage to my body. Kim
QUOTE (seahorse @ Jan 20 2007, 04:26 PM) 
I WAS bitten by a tick in September 2004 thanks to my cat. I just never thought of Lyme disease. When the first test came back negative I didn't think anything of it but continued to be very sick. I was re tested in September 2006 from Igenex Lab in California and was positive with 5 bands showing Lyme. My T cell count was 21. I have copies of both my labs. I am seeing a LLMD who knows what he is doing with my treatments. I don't think any doctor would give someone these massive amounts of antibiotics just because...and I wouldn't take them. I thought maybe by writing about my experience would help someone else out. I am going through meno too. I just happen to have been infected by LYME also.
I did not meant to imply that the doctor is wrong, I did not know you were bitten by a tick. I saw many diferent drs in regards to my symptoms and now a bit sceptical of all Dx. Good that you finally figure out what caused yours, and good luck with the treatment.
I originally wrote the post so no other woman on this board would end up in the situation I am in right now. Most of the time it is perimenopause and just because we are in that age bracket the doctors assume that is the cause of our symptoms. Unfortunately in my case it was more than that. It was so hard for me to go on to different doctors when even doubting myself. But as I became sicker I had to. Now I will most likey have chronic lyme for the rest of my life because my doctor wouldn't open his eyes or ears and had me believing it was all hormonal. .
So please ladies, no matter what your symptoms are talk to your doctors, make sure they listen and if they don't then find another one and get an answer you feel comfortable with. I wouldn't want anyone here to go through the suffering I have been through. It has not been a pleasant experience the past 2 years and counting.
Kim
So please ladies, no matter what your symptoms are talk to your doctors, make sure they listen and if they don't then find another one and get an answer you feel comfortable with. I wouldn't want anyone here to go through the suffering I have been through. It has not been a pleasant experience the past 2 years and counting.
Kim
Hi Kim,
I'm doing well. I know what you mean when you say you felt like the crazy one. There have been times with this rib cage inflammation I have had when I have felt exactly the same way. It took 2 years for a doctor to finally tell me what was going on and why. For me, the belief is that it is hormonally related. But at least I have some good meds now and can get on with life for the most part until it settles down. Almost makes a case for taking hormones though.....well, until you read the side effects of that and realize that's not the answer either!
You are right when you say that we cannot be afraid to seek out another doctor. We owe it to ourselves when we no longer feel listened to. I had my doctor send me to a second rhuematologist, one that specialized in skeletal-muscular conditions, and for me, that was a lifesaver. No doubt I would otherwise still be wondering what was wrong with me.
I am so glad you have found help. I think of you often and hope that you will be feeling better soon. I know that 2007 will be a better year for you.
I'm doing well. I know what you mean when you say you felt like the crazy one. There have been times with this rib cage inflammation I have had when I have felt exactly the same way. It took 2 years for a doctor to finally tell me what was going on and why. For me, the belief is that it is hormonally related. But at least I have some good meds now and can get on with life for the most part until it settles down. Almost makes a case for taking hormones though.....well, until you read the side effects of that and realize that's not the answer either!
You are right when you say that we cannot be afraid to seek out another doctor. We owe it to ourselves when we no longer feel listened to. I had my doctor send me to a second rhuematologist, one that specialized in skeletal-muscular conditions, and for me, that was a lifesaver. No doubt I would otherwise still be wondering what was wrong with me.
I am so glad you have found help. I think of you often and hope that you will be feeling better soon. I know that 2007 will be a better year for you.
This is a "lo-fi" version of our main content. To view the full version with more information, formatting and images, please click here.