Fibro

Posted Friday, November 09, 2007 8:08 PM

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I have been just dx with fibro and today my ancles and knees are really swolen and painful is this normal??

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Posted Saturday, November 10, 2007 4:14 PM

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Does fibro get worse every day??

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Posted Saturday, November 10, 2007 8:03 PM

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Hi Joyce,
I'm a 44 year old woman who was healthy as could be until February 2007. Then things went down hill fast and my life did a complete 360 turn. I was finally diagnosed after seeing 3 doctors and now go to physical therapy which has helped. My PT told me that I was going thru a grieving stage and now I'm in the "how do I fix this stage? or how do I live as normal as possible?" Life will never be the same again and I have just had to accept that.
I have terrible pain in my knees and ankles always. My lower back has been bad for the last two weeks and its hard to do anything. Some days its in my jaw and I can feel the pain all the way down my arm to the tip of my middle fingers. They say Fibro doesn't get worse, but I've become aware of other issues since being diagnosed. For my last visit to the Pain Mgmt Dr. I made a list of 20 serious symptoms that have been causing havoc on my body. She asked me how I was feeling and I just cried and handed her the list. I knew I'd never be able to remember what my body was doing, so I kept a blank sheet of paper on the frig and when something awful was happening I'd write it down for the doc visit. I think its because I'm on medical leave and really have time to notice what's going on in my body. I have terrible cognitive issues; which is very common. My short term memory has suffered greatly. I make lists of things to do and then misplace the list. I also have terrible trouble multi tasking; now when I cook, Patrick(my fiance)gets in the kitchen with me and helps. I thought I was losing my mind because I kept having the sweats and then the chills. I talked to a psychotherapist who has fibro and was told she experiences the same thing.
Fibro is hard, but stay strong.
Make sure your family is on bored with everything you are going thru. I sent my fiance' website info via that listed all the symptoms I'm up against. It really helped to open his eyes and he's been so supportive. Their will be days when you can't do what you used to and that's normal.
You might want to buy this book from Overstock.com it's called "Fibromyalgia&Chronic Myofacial Pain" by Devin Sarlanyl and Mary Ellen Copeland. It's like my bible for questions that I have. Patrick has even been reading it for a greater understanding of who I have now become.
My Pain Mgt Dr has been great and so has my phsyical therapist. Do be careful if you go for physical therapy that the person working with you believes in Fibro. I have heard horror stories of fibro patient's feeling worse when they came from PT bcuz the therapist didn't really believe in the diagnosis.
Are you on any meds yet? Don't get frustrated if they don't work, but make sure to keep in contact with your doctor. I have been on so many meds and still don't have the correct combo to provide relief. I take a pill for my stomach, pain killers and anti inflammatories every 4 hours,a sleeping pill and antidepressent before bed and am using an antibiotic cream under my breasts as I keep getting an awful yeast infection. That hasn't helped my sex life, but Patrick has been very understanding. Not sure if you have the same yeast thing going on, I never did until fibro hit. I've been told people with fibro should never wear their bra more than one time without washing it and to always use powder.
Trying to think what else I can tell you. It's a hard time, but this site has taught me alot. It's hard when you don't know where to turn and everything is so new.
Can I ask how old you are or if you are working? Do you live in an area with changing weather?
Well, if you want to chat via email I can give you that. It's albrigkl@alverno.edu. Don't worry I'm not a nut, just trying to give support to anyone that needs it.
Do take care,
Kris

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Posted Saturday, November 10, 2007 11:11 PM

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Joyce: You asked about swollen knees and ankles, to my knowledge this isnt a part of fibro. You may have other arthritis issues going on as well.
And I agree about the physical therapy. Be very careful if you should go for any. They nearly did me in when they sent me.
In fact, the way I knew I had something wrong was in the way I couldnt handle physical therapy exercises. I used to be in ballet and could do anything, not now!

Best thing to do is find a doctor who will help you make a plan for you, because everyone is different.
Blessings........

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Posted Sunday, November 11, 2007 9:04 AM

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I just got dx on Thursday past and the last 2 months have been horrible.The rumo I am going to told me there is no meds for this except antidepressents and pain pills.I got up this morning with swollen ancles,bad pain in my back,and pain in my very low belly.I can barely walk and have to go to work tomorrow.I am very scared due to my blood work all came back fine.But I hurt so very badly and it is getting worse daily.Yes I live where there is changing weather.I am 42 years old and I can't seam to do anything now.
God bless you all and any advise you can give me I will take gladly. my e-mail address is billyjo@mis.net
Also I am not a nut just trying to find out all the information I can so I can try and get better!!!

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Posted Sunday, November 11, 2007 7:13 PM

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I have been reading thru out the day and you do not swell with Fibro.I have swelling in several of my joints.I have more symptoms of OA I think....I am so tired and hurting and don't know where to turn...Does OA show up in blood work?

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Posted Sunday, November 11, 2007 7:30 PM

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Hi,
My doc thought I had RA at first bcuz of the swelling and pain in my joints. I remember being so happy to know it was RA and finally have a DX, but my blood work came back showing no RA and the doc told me she couldn't help me anymore. My orthopedic surgeon diagnosed me with OA in my knees from a MRI on my knee. Before I was diagnosed with Fibro and the OA in my knees I had alot of swelling in my hands and knees. My fingers looked like sausages! I work well with heat and when I get the swelling I use a heating pad. You may find as you go along and talk to people that you may have symptoms that aren't on the list, but other people experience the same thing. I hadn't heard of getting hot and sweaty and then cold and clammy until I was in contact with someone who had fibro for l2 years and had these issues. She had them at night, mine are mostly during the day.
Just be patient, you are going to be learning alot about thins that just make no sense. I went thru what you are experiencing now. I still feel lost and cry at times, its only normal.
Take care
Kris
Kris

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Posted Monday, November 12, 2007 12:51 AM

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Likewise, you can Email me at Borisdusty@netscape.net Kris or Joyce!

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RoseMarie7

Posted Monday, November 12, 2007 12:58 PM

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Hi,
The first rheumy I went to had told me that I had RA, even though my tests came back negative. She said that 20% of people with negative bloodwork do have RA. Its diagnosed clinically, all symptoms taken into consideration. I didnt really believe it, cause I am the type that wants proof, so I went to another rheumatologist and it said it was not RA..I have OA and fibromyalgia. A while back I had a body bone scan. You get injected with some dye and then come back 2 hours later for the MRI. The results showed darkened areas (OA) on my wrists and ankles..it looked like bands around my wrists and ankles, so there is a way to test for OA.
I have been having alot of trouble climbing stairs...my legs get very fatigued, even just a few steps, and loss of breath. The doctors sent me for a stress test and I was only able to last 2 minutes on the treadmill before my legs weakened. I have had so many tests for that and everything comes back normal. My next appt is with a neurologist. If that comes back negative too, I will just chalk it up to the fibro.
Ask your doctor about a bone scan of the body.
Ro

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Posted Monday, November 12, 2007 6:29 PM

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I have a bone scan tomorrow due to the swelling in my hands and feet.The dr. got to see the red and swolen hands and ancles today first hand.He is sending me to a specialist in any kind of art.I sure hope we find something out soon.Good luck to you all!!

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Posted Tuesday, November 13, 2007 6:05 PM

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Joyce, let us know what you find out!

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Posted Wednesday, November 14, 2007 1:02 PM

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Joyce,
Good luck with the bone scan. I had one done and that's how they found the OA in my knees. It's not painful, so that is a good thing.
You might even be able to get the person doing the scan to give you some info on what they find before going to the doc.
Oh, make sure you tell him if you have had any other type of X-rays done and he or she will pull those together and send them along with your scan to the Radiologist that reads the scan. It gives them a little more background to work off of.
Take Care
Kris

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RoseMarie7

Posted Friday, November 30, 2007 9:09 AM

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Im just wondering if any one else is experiencing the symptoms I am. First I have been diagnosed with Fibro and Chronic Fatigue and I know that body pain is a result of this. But I am having problems with my legs and arms that have not gone away in the last 7 months, even with the medicine. My legs and arms get very weak and fatigued to the point where I am having problems climbing stairs or walking more than 1/2 block. I can do it, I still work, but the legs get very weak and then after awhile they go back to normal. Same with the arms, throughout the day it gets worse. I had all kinds of tests, Stress test, lung Xray, Doppler on my legs for circulation, an EMG to test the nerves and muscles and a MRI. Although I have back problems and arthritis in the spine, the neurologist said that would not cause my symptoms. I am at a complete loss now because I feel as if it is never going to get better if no one can decide what it is. The doc is now telling me it must be the fibro....
Anyone experience anything like this
Thanks
Ro

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Posted Friday, November 30, 2007 6:56 PM

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Hi Ro-
Is yours below the elbows to the tip of your fingers and from the knees down to the tip of your toes?
If so, I have that. I get tingling, they ache, and go numb as well. It's just a big old pain! I can't pull up the covers on my bed because it hurts my arms so much and they feel exhausted. I used to do alot of fitness and now have trouble walking 5 minutes with my dog!
Hope this helps.
Kris

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Posted Sunday, December 02, 2007 7:41 AM

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Rosemarie, I have found that like Kris my Fingers goes numb and my feet.This and my knee and ancle hurt every day.
Good luck to you and God bless
Joyce

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Posted Sunday, December 02, 2007 2:18 PM

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Hi All,
I think their should be some way to add new symptoms us fibro people have to a medical link. I have read of several symptoms, but not the numbness and swelling or the sweats with chills. It's not like I'm the only person who has these symptoms, I talk with other fibro people and they have the same thing. uggg.
Well, have a good day all!
Kris

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RoseMarie7

Posted Monday, December 03, 2007 9:13 AM

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http://members.tripod.com/~abarnabas/indexfibrosymptoms.html
This list is a little more informative than others. I also sent another link in one of the other threads, I cant find it now, that had a real good checklist. If I find it I'll send that along too.
The problems with my arms and legs in mostly in the upper portion, my fingers dont get numb, just a weak tired feeling in my arms and legs, like they were bags of cement. My knee and ankle hurt too.
Thanks for your responses!
Ro

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Posted Wednesday, December 05, 2007 9:20 PM

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Hi Ro-
Thanks for the site info; I'll be sure to look it up!
Wouldn't it be great to be a "barrel of monkeys" and just shake up us fibro people and crack the barrel and we all come out normal again?!
Not sure what made me feel like that, but its been a trying week. Lots of tears coming out of nowhere.
Take Care!
Kris

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Posted Friday, December 07, 2007 11:57 PM

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RoseMarie: I'm sure you probably have, but if you have not had your thyroid tested be sure to do so.
I couldnt walk up or down stairs when I had my thyroid trouble (pre diagnosis).
Just a tnought......

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