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Old 02-25-2010, 10:29 AM   #556
kaytieeldr
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I need help, and I hope nobody minds

I know it's wrong, but after everything I've read over the years - and despite being told by a PA to "stop reading" - I'm relatively certain I have fibromyalgia. Almost everything hurts - shoulders, arms, hands, back, thighs, feet (tops and bottoms), neck, head... getting into bed at night, I'm sure my neighbor thinks I'm having 'fun' because it hurts so much to move to a different level. Getting out of bed is even worse. Getting out of the car? I hate to even go food shopping. Getting in is a little easier, I can just sort of fall in - even then, I don't have a lot of muscle tone in my left (good) leg and sometimes have to physically lift it with my hands so I can close the door.

Sometimes my hands and wrists swell to the point I can't even make a fist - just a claw. My feet swell, too, not necessarily at the same time, but it doesn't matter as much because they don't need the same fine motor skills my hands do. I have bladder issues that aren't resolved by even a urologist. And I'm depressed - crying a LOT lately. I sleep poorly. I can't find a comfortable position, and I'm up about every 45 minutes - yet I'm sitting at the computer and dozed off in sitting up the chair a little while ago.

I need help and don't know what to do. I can't get any medical professional to take me seriously - I've even changed practices.

eta: about the depression/crying - there's nothing else in my life that would cause this. I like my job, I like my friends, I even like my siblings. No spouse or kids, but I haven't been married for years; nobody close to me has died recently.

Thank you all in advance for your time. I'm in Massachusetts, north of Boston, if that helps.
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Old 02-25-2010, 10:35 AM   #557
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geez, that sucks. I was diagnosed about 20 years ago, when the docs would pat your hand and smile.

Is your new practice younger or older docs? I've had my best interaction with a pup who is eager to try the latest meds. I went off of Lyrica about 4 months ago, because the Savella was kicking in. Savella is an antidepressant specifically for fibro. It has been a huge blessing after I got past the side effects.

Pain really stinks, I hope you find some relief soon.
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Old 02-25-2010, 10:46 AM   #558
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Thanks. The Nurse Practitioner to whom I'm assigned is about my age, but my doctor is maybe, late 30's? I'm going to print out what I wrote here and make an appointment for a physical - and NOT LEAVE until this has been addressed to my satisfaction!

Um, can anybody come with me and make sure I keep my resolve?
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Old 02-25-2010, 10:47 AM   #559
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kaytieeldr,

Has your doctor ordered blood work to find out what you rheumatoid factor is?
Swelling in your hand is a sign of rheumatoid arthritis.
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Old 02-25-2010, 11:31 AM   #560
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They haven't, Laura (and my previous PCP specialized in rheumatology ). One advantage to this practice is, you can get a same day or at worst, next day appointment. Do my hands need to BE swollen for the blood test? My right hand is fine at the moment, and my left is greatly improved even from this morning. Thanks!
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Old 02-25-2010, 01:59 PM   #561
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Hi Katieeldr!

We don't mind. It does suck when you cannot get a diagnosis. Even more important than diagnosis is help with the pain.

My docs all thought I was pushing for a dx but I just wanted some relief from the pain, which finally I got.

I am on amitriptyline for sleep and pain and lyrica for the pain. They both work pretty well. I thought that the ami wasn't working as well and went off it for about a week and cried pretty much the whole week. So I guess it was working.

I hope you find some relief soon and get dr to take you seriously. Swelling could be RA or something else. My left leg retains water so I have been on a water pill for some time. They don't know why

On my bad fibro days I tend to swell, fingers, hands, face, eyes, legs. And I hurt on those days, brain is in a fog too.

Get checked for RA though. Hope you get some help soon.
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Old 02-26-2010, 06:22 AM   #562
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Quote:
Originally Posted by kaytieeldr View Post
They haven't, Laura (and my previous PCP specialized in rheumatology ). One advantage to this practice is, you can get a same day or at worst, next day appointment. Do my hands need to BE swollen for the blood test? My right hand is fine at the moment, and my left is greatly improved even from this morning. Thanks!
Good luck at the doc's today. I hope you start your journey towards real answers and less pain.
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Old 02-26-2010, 03:33 PM   #563
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Old 02-26-2010, 03:37 PM   #564
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46 here, diagnosed 20 years ago. Having hot flashes, night sweats, and all kinds of craziness, more migraines, pms for longer periods. 3 week periods or none at all for 3 months. It has gotten worse since starting the Savella, so don't know if it is related or not.

Good luck with the phone call. I hate waiting for those.
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Old 02-26-2010, 08:03 PM   #565
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kaytieeldr

We have all had issues with Drs. Especially those of us diagnosed before the CDC made it an offical disease 10 or so years ago. Why does she want want you to stop looking? To keep you quiet or because she feels she has made a diagnosis? Either way she should let you take some control of your illness by seeing what is out there. It does sound like fibro to me. I too have alot of swealling in my hands, legs and feet and they all can get wicked cold for no good reason. Have you been checked for lupus, ms, or thyroid problems? Many other issues look like Fibro.

Indiana Rose Lee

It is so great to see you! How has the Job been going? Has it been exhausting or pretty manageable. How have your kids been doing? I know you had alot on your plate the last time you were here!

Tinker'n'Fun

Congrats on writing the letter. I have done that a few times and I find the process exhausting but cathartic. Yes I'm perimenapausal, Cycle changing from exactly 28 to 29-32. Drives me crazy being off. I have also noticed that I have "fibro pms" where my fms/cfds symptoms get much worse around day 12-14 for about a week its really bad and I think "what happened to make it so much worse?" then it dawns on me that it is mid cycle and I think "duh you should remember this by now" because it has been happening with more frequency for about two years now. Got to luv my memory I never had PMS in my life so this is quite a change.

Bright eyes
How things in Canada? Are you feeling a little better? You guys did good in the Olympics.

I'm still feeling fairly good. This 3 weeks of snow with more than 58 inches and all the snow days- 8 and just as many half days is waisting all my energy. Had a few days where I needed to spend a few hours in bed in the late morning after shuttling the kids to school.Which worried me a bit but I tried to focus on the fact I'm so much better than I have been in nearly a year Doing the Pilates every day this week and noticing my back and neck are straightening out. I have been slighty hunched for years it seems so it feels good to sit straight. Only downside is by doing the Pilates I cannot get what I need to do at home, still far behind on cleaning but I'm trying to think of the work out as physical therapy to get me ahead before the next crash. I could use every bit of energy I have cleaning and never get caught up. To do that I would need help 8 hrs a week fo a few months at least and we cant afford that right now soooo taking care of me and not the house. Glad DH is so supportive of this Keep warm everybody!

Sending pain fee vibes and Pixie dust to all
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Old 02-26-2010, 09:34 PM   #566
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Quote:
Why does she want want you to stop looking? To keep you quiet or because she feels she has made a diagnosis? Either way she should let you take some control of your illness by seeing what is out there.
I don't know. It turns out I couldn't get an appointment until Tuesday, but it's with a different practitioner in the same office and I was told the first won't know I'm switching... and I will be going in with a WRITTEN LIST and not leaving until everything is addressed. I just hate to complain, it's how I was brought up. I mean, it was fine to complain about little things you could control, but not about personal things.

My other big concern - which, sensibly, I know it's not - is scleroderma. My brother had it, so I know the signs, and while I know I don't have them, it's my big fear. So I guess part of my problem is concentrating too much on the wrong thing and not myself considering other possibilities.
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Old 02-26-2010, 10:05 PM   #567
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I don't know. It turns out I couldn't get an appointment until Tuesday, but it's with a different practitioner in the same office and I was told the first won't know I'm switching... and I will be going in with a WRITTEN LIST and not leaving until everything is addressed. I just hate to complain, it's how I was brought up. I mean, it was fine to complain about little things you could control, but not about personal things.

My other big concern - which, sensibly, I know it's not - is scleroderma. My brother had it, so I know the signs, and while I know I don't have them, it's my big fear. So I guess part of my problem is concentrating too much on the wrong thing and not myself considering other possibilities.
A list is a very good idea. I always have 2 lists one I hand to the Dr to put in my chart and one I keep so we can go over it together and I don't forget anything. FMS has made my memory awful and I often go off on a tangent the second I get asked a question because I cant keep what I wanted to say in my head if I'm asked a different question. Don t think of it as complaining but as reporting. I grew up in RI and DH in MA and as you know old Yankees never complain and never stop moving. Unfortunately those two things make FMS much harder to deal with. I honestly think that if I had stopped working so hard and complained more effectively sooner I would have not become totally disabled.

You may want to check out the Fibromyalgia support groups in Ma to get a list of Drs. Even if you don't want to go to meetings you may be able to get a contact person who could help you find a decent Dr. I had a great Dr in Providence but she moved to California 5 years ago. she was the head of infectious diseases at Brown. She not only diagnosed me but she found out I had Toxoplasmosis! I've been treated but I have a chronicly high titer. They cant explain why . You may also want to look a lyme disease. As you know it is quite bad up there and can cause all these symptoms as well. Take care.
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Old 02-26-2010, 11:30 PM   #568
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About the stopping working so hard earlier being helpful, I am not sure about that. About 4 or 5 years ago now (I forget when my symptoms first started) I would have sworn up and down I had RA or some type of arthritis. My first specialist told me I had carpal tunnel b/c after pressing on my nerve for a long time I finally felt a tingle in one of my fingers even though my nerve conduction study was fine.

Anyhow, what I am getting at here is at that time I worked at the Urgent Care Clinic and one of the dr. who believe in fibro examined me. Although at the time, it was only my fingers, hands, wrists, shoulders, mainly my arms and hands that hurt the most. He did tell me at the time, that did not mean it wasn't fibro. Just that because I stood on my feet from 8 am till 6 pm that was probly keeping the pain away there cause I was active.

And boy was I active, I used to show patients to their rooms. And I walked pretty fast cause I had to come back and get the next patient, had to keep all the rooms filled all the time so the drs would not get mad. Sometimes I would walk so fast around the corner that patients would lose me and I would turn around and they weren't there. lol I would have to go back and get them again. lol

As SOON as I started school and started sitting most of the day, my symptoms progressed to the rest of my body year by year I got more pain and more stiffness.

When I saw that Dr. last year he said probably cause I wasn't used to moving around anymore is why I got worse. And now if I stand all day, and I drive home, I am so stiff I can barely get out of the car.

I am still daydreaming about being in the hot hot weather. I keep pricing out disney trips, even though I have no job lined up yet for when I am done school And running out of money as we speak. So ya DAYDREAMING, doing LOTS of it.
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Old 02-27-2010, 12:15 PM   #569
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Ahhh I am soo stressed out with school, only 8 more weeks to go and so much work, I don't see how it is possible.

With all this stress I am spending more and more time on the disney website pricing out trips. It is sooo hard not to book a trip. But unitl I get a job, I don't feel it's wise. But then again, I never was a wise girl.

I just keep thinking with my income tax and a little bit more I can squeeze a short trip in for not so much money. lol That's if I go in the summer. But I don't want to go so soon, cause I want to lose weight so I can have an easier time.

Ahhh, can you tell the two sides of my brain are fighting each other? This is what I am going through on a daily basis.
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Old 02-27-2010, 06:43 PM   #570
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Ahhh I am soo stressed out with school, only 8 more weeks to go and so much work, I don't see how it is possible.

With all this stress I am spending more and more time on the disney website pricing out trips. It is sooo hard not to book a trip. But unitl I get a job, I don't feel it's wise. But then again, I never was a wise girl.

I just keep thinking with my income tax and a little bit more I can squeeze a short trip in for not so much money. lol That's if I go in the summer. But I don't want to go so soon, cause I want to lose weight so I can have an easier time.

Ahhh, can you tell the two sides of my brain are fighting each other? This is what I am going through on a daily basis.
Just to make your job of being a good girl harder they have extended they 25%-45% off deal to dates in June.. This is your last semester isnt it? Maybe a severe case of Senioritus?


If it is any consolation DH has been home most of the last three weeks because of the snow..lucky us he can work from home and stay safe and he is Majorly stressed about getting his papers done in time. Maybe the cabin fever of now 70 inches of snow in 3 weeks is to blame but the dates seem so close. Of course our trip to Disney seems years away..the bill for it feels like its right around the corner. Isn't funny how our sense of time changes depending on what we are thinking about?

I agree the second I stop I hurt more so moving is a good thing. But by moving too much the exhaustion and migraines hit me big time. Those two things especially in combination put me in bed for weeks!

What i was realy referring to is the New England pace of life There is a very special workaholic culture in New England. It is not unusual for a person on salary for 40hr week to work 70 because it is expected to get the job done. No extra pay or kudos just expected. Most people get "breaks" but punch out and return to eat at their desk etc then punch back in . DH has had a great deal of difficulty adjusting to his new boss who is so generous with his use of time. Sometimes we feel guilty or worry if his job it ok when he takes a day off. All ptsd from NE. PA is much more relaxed and sane in what they expect from their workers. The puritan work ethic is alive and well in RI and MA and make a balanced life impossible.So what I meant was if she has a second or third job, works tons of unpaid overtime or is working full time while going to school full time she might want to slow down. If I hadn't worked two jobs while restarting school Maybe I would not have become as disabled as I am. But in New England with many families you do not ask for help unless its an emergency otherwise you are expected to not whine and suck it up. Very different in the mid west and from what I hear in Canada too.

PS you can blame it on my family since they came over on the Mayflower. All my fault,
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