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Old 01-04-2008, 12:26 PM   #1
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Location: San Diego, CA USA
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Campo Kim HB User
Newly diagnosed--anyone have orthostatic hypotension?

Hello,

I am new to the Fibromylagia board. I have been on the Lupus board in the past. I was diagnosed with Lupus in September 2006, but kept having pain in my elbows, deep in my upper back, neck, base of skull and occasionally in my knees. My rheumatologist recognized the symptoms of fibromyalgia, did the pressure point test, and diagnosed me last month.

Lately I have had some increasing problems with getting up from sitting or lying down. My rhematologist sent me to a cardiologist who did a tilt table test. I guess normally a person with orthostatic hypotension will respond to the test within 20 minutes; it only took 5 minutes with me. My blood pressure was 120/80 and dropped to 81/53. It was one of the scariest moments in my life. The test ended there and was deemed positive.

I have read (and my rheumatologist confirmed) that many people with fibromyalgia have orthostatic hypotension. Does anyone suffer from this? My cardiologist basically told me to eat tons of salt and increase my water intake. I get dehydrated so easily that they tested my adrenal function, but all was normal there.

I really hate having fibromyalgia (I know we all do). It seems like every time I turn around, there is another symptom that is related to it. There are so many symptoms that mimic other conditions that I drive myself crazy trying to self diagnose.

On a positive note, my doctor recommended Lyrica for my pain. I have seen an improvement with just 50 mg, but I know I will need to increase my dosage soon as I am beginning to feel some breakthrough pain. I am so sensitive to most medications, so it was nice to take a drug that didn't have side effects with me.

It took so many years for me to come to this point in my life in terms of knowing what is wrong with me. For the past 9 years I had been told I was "just depressed" and given another anti-depressant to try. I have felt crazy, like a hypocondriac and that this is all in my head. It is such a frustrating disease. I guess that is why I am here--to feel validated by meeting others with the same experiences.

I look forward to being a part of this group.

Kim

 
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Old 01-04-2008, 01:31 PM   #2
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Join Date: Jul 2007
Location: Falls of Rough, KY
Posts: 543
Jenn4508 HB UserJenn4508 HB User
Re: Newly diagnosed--anyone have orthostatic hypotension?

Quote:
Originally Posted by Campo Kim View Post
Hello,

I am new to the Fibromylagia board. I have been on the Lupus board in the past. I was diagnosed with Lupus in September 2006, but kept having pain in my elbows, deep in my upper back, neck, base of skull and occasionally in my knees. My rheumatologist recognized the symptoms of fibromyalgia, did the pressure point test, and diagnosed me last month.

Lately I have had some increasing problems with getting up from sitting or lying down. My rhematologist sent me to a cardiologist who did a tilt table test. I guess normally a person with orthostatic hypotension will respond to the test within 20 minutes; it only took 5 minutes with me. My blood pressure was 120/80 and dropped to 81/53. It was one of the scariest moments in my life. The test ended there and was deemed positive.

I have read (and my rheumatologist confirmed) that many people with fibromyalgia have orthostatic hypotension. Does anyone suffer from this? My cardiologist basically told me to eat tons of salt and increase my water intake. I get dehydrated so easily that they tested my adrenal function, but all was normal there.

I really hate having fibromyalgia (I know we all do). It seems like every time I turn around, there is another symptom that is related to it. There are so many symptoms that mimic other conditions that I drive myself crazy trying to self diagnose.

On a positive note, my doctor recommended Lyrica for my pain. I have seen an improvement with just 50 mg, but I know I will need to increase my dosage soon as I am beginning to feel some breakthrough pain. I am so sensitive to most medications, so it was nice to take a drug that didn't have side effects with me.

It took so many years for me to come to this point in my life in terms of knowing what is wrong with me. For the past 9 years I had been told I was "just depressed" and given another anti-depressant to try. I have felt crazy, like a hypocondriac and that this is all in my head. It is such a frustrating disease. I guess that is why I am here--to feel validated by meeting others with the same experiences.

I look forward to being a part of this group.

Kim
Kim, Welcome to this crazy world of Fibro and sorry to have to "meet" you this way. I am not sure about this symptom you have but chalk it up to good ole fibro. I am not making light of it but it seems there are more and more symptoms everyday. It seems weird that you would mention that your blood pressure dropped so low.... Whenever I go to my pain doc, they always do the weight, check meds, and blood pressure.... My normal blood pressure, even being at the docs office, is normally about 91/63, somewhere around there if not even lower on top. The nurse even said if anyone else ever took my blood pressure they would think I am going into shock or dying. When I go in there and my blood pressure is what most people deem normal 120/80, then they know I am in alot of pain. Now is that weird or what. Sweetie, sometimes I get up and stumble my way through the house all day on my bad days.... If a stranger were here they would probably think I was drunk All the side effects of drinking and I don't even drink....

I am wondering if someone can help me with my latest symptom since you have started this thread. I started neurotin about 6 weeks ago along with all the other cocktail of meds. Now my pain doc is the only one who ever weighs me every month and every month I am losing about on average 5-7 lbs. I know it sounds like a dream and believe me, I needed to lose. But then, I had to go back in the middle of the month for additional trigger point injections and in 18 days I had lost 10 lbs. Its not like I am trying but I really don't have an appetite and I am sure the meds aren't helping along with the stress. Without going into to much detail, about 2 weeks ago, every time I ate anything I had to make a mad dash to the bathroom, if you get my drift. I have been having to take immodium (sp) almost daily. Since this summer, I have dropped 4 pant sizes. Does anyone else have any of this going on with their fibro???????????

I really try to help as many people as I can so I will tell you that I am also diagnosed with BiPolar 1 (really not under control), chronic myofascial pain, hypermobility, fibromyalgia, severe migraines, suffered TIA strokes and am only 44. No pity parties just looking for some help and to help out the others that need the same. Any suggestions would be greatly appreciated.

KIM, Glad to have you here where you belong and will meet many others just like yourself.... Jenn

 
Old 01-04-2008, 01:34 PM   #3
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Join Date: Jul 2007
Location: Falls of Rough, KY
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Jenn4508 HB UserJenn4508 HB User
Re: Newly diagnosed--anyone have orthostatic hypotension?

Kim - Just another thought.... for your neck and back, have you tried the trigger point injections???? Some people won't agree, as my mom is a retired nurse and doesn't but my pain doc does not use steroids in his injections. Just a thought. However, he is not able to do them in the elbows and knees as the trigger points are not as big and the chances of hitting them are not good. Jenn

 
Old 01-04-2008, 05:05 PM   #4
Junior Member
(female)
 
Join Date: Dec 2006
Location: San Diego, CA USA
Posts: 37
Campo Kim HB User
Re: Newly diagnosed--anyone have orthostatic hypotension?

Quote:
Originally Posted by Jenn4508 View Post
Kim - Just another thought.... for your neck and back, have you tried the trigger point injections???? Some people won't agree, as my mom is a retired nurse and doesn't but my pain doc does not use steroids in his injections. Just a thought. However, he is not able to do them in the elbows and knees as the trigger points are not as big and the chances of hitting them are not good. Jenn

Hi Jenn,

I had a cortisone shot in my hip a little over a month ago and it was quite helpful. I may be getting one in my lower back as well, but the doctor wanted to wait until all of my adrenal tests came back (cortisone can affect the results). I will ask about trigger point injections. My doctor has me crush up one Flexeril with one Soma, mix with hand cream and rub into the painful areas. It really does help!! I cannot take a lot of meds by mouth because of my sensitivity but it is OK to put it on externally.

I too have lost a lot of weight. It might have to do with my cocktail of meds as well. I have lost over 20 pounds in the past couple of months. I am not really complaining, except it is a pain to have to buy new clothes (dropped 4 sizes as well) and a little scary. That is one of the reasons they were testing my adrenal functions.

Anyway, thank you for your kind welcome. I look forward to "talking" with you.

Kim

 
Old 01-04-2008, 05:48 PM   #5
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Join Date: Dec 2006
Location: Greenacres, FL
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sunny47 HB User
Re: Newly diagnosed--anyone have orthostatic hypotension?

Hi all....Jen 4508 has your thyroid been checked. With your weight loss and rush bathroom trips after eating you might be hyperthyroid. I speak from experience as that is what happened to me some 20 years ago and ended up very hyper. They ended up killing off my thyroid and have been on Synthroid since and for life. Just a thought to explain your symptoms.

sunny 47

 
Old 01-04-2008, 09:18 PM   #6
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Join Date: Nov 2007
Location: Louisiana
Posts: 254
Grapedy HB User
Re: Newly diagnosed--anyone have orthostatic hypotension?

Orthostatic hypotension: Check! Although I'm pretty sure mine is mostly leftover side effects from a horrendous ear infection about 6 years ago. My head's never been the same. I'm also tall and skinny, and that makes it more likely to happen.

 
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