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Posted 3/2/2009 8:29 AM (GMT 0)
I have a question about fibro pain. I'm still waiting for my doctor to rule on my mystery ailment. I think it's a combo fibro/cfs and I've done a lot of reading but one thing that doesn't fit is this: the more I move and do exercise, the more I hurt.

Over the past few years, I've had:
- total ribcage inflammation for no apparent reason
- diagnosed with tmj years ago
- symptoms kinda depend. Seems like when I start hurting, the fatigue subsides and vice versa. It's really strange. It's almost like they alternate.
- i hurt a lot right under my shoulder blades, shoulders and neck. My knees and wrists will also act up. My hips are what hurt the most. The whole thing. The right more than the left. I can't be in the car for more than 30 minutes or so without it hurting (same with sitting).
- over the past few months I had so much trouble concentrating and being able to keep up that i had to take a semester off school.
- can't sleep well to save my life. I'm constantly exhausted no matter how little or how much I sleep. I used to have trouble staying asleep and now I can't fall asleep and when I do, I don't sleep well. I never go into that deep rem sleep.
- i have had more headaches in the past year than in my entire life. I never used to get headaches..maybe once a year and in the last year, i get 3 or 4 in a week.
- i have night sweats that i've never had before. I hate being cold more than ever (maybe that's just me getting older), I have IBS but i've had that for a long time. I've been losing my hair like crazy.

I know I'm forgetting some stuff but it's really late.

My doctor has done a full blood panel. I have 5 pages of labs that are all completely normal. He checked inflammation panel, cbc, calcium, thyroid, iron, who knows what else. Everything is stellar as he puts it and everything is smack dab in the normal range.

I'm going back to see him on Wednesday and I'm tired of being tired and feeling crappy and not knowing what this crap is. I'm getting seriously annoyed that he keeps asking me if I'm depressed and if I cry for no reason etc. I know what depression is, I've had it before and this is NOT it. I am not weepy, mopey, crying for nothing and not wanting to do anything. I want to do things, I am just physically unable. I keep telling him that it feels like someone is sucking the energy from me through my feet. That's the only way I can explain it. I am however getting bummed out that I have no answers here :(


So all this to say: I've read everywhere that exercise helps with fibro so if i hurt worse when i do things, does this mean I don't have fibro and that it's something else or does that statement just not hold true for everyone?

Post Edited (Marie76) : 3/2/2009 1:42:09 AM (GMT-7)

Posted 3/2/2009 11:54 AM (GMT 0)
Hello Marie,

Welcome to our forum and I am sorry you having such a rough time.

The one thing I can really answer is the exercise question... first off I must tell you Fibro affects all us differently. It is the stangest disorder in the manner in which it moves around our bodies.

Back to exercise. I have been a major tennis player my entire life so working out was a huge part of my life. I was diagnosed with Fibro over a year ago and now you would not believe how difficult exercise is for me. I played, what for me was very lightly, 2 weeks ago followed by a 30 minute swim and I suffered terribly. All I can say is as important as it is you have to go at it very carefully. You cannot do anything w/o proper stretching and conditioning. The things you were able to do may now cause real issues with your muscles. I do not know what you mean by the more I move. Are you doing things too aggressively?

Exercise intolerance is a definite symptom of Fibro. It has to be done very carefully. Walking is wonderful but it can even be difficult. Hard to believe but it is a fact I have HAD to accept.

Good luck and let us know how you are.

Patsie
Posted 3/2/2009 12:05 PM (GMT 0)
Hi, Marie, and welcome!  It sure sounds a lot like fibromyalgia to me.  Your doctor is checking you for other problems that have the same symptoms of fibro.  You do want to rule those out first.

 

Exercise and stretching has to be gentle, until you work into doing a little more.  Patsie is correct, though.  You cannot go out and do the things you used to do until you slowly work your way back.  I'm one who never gives up so I never advise others to, either.  I try to find a way around the fibro to live my life the way I want.  I would suggest gentle stretching and walking.  If you play a sport, practice only a few minutes at first.  If you aren't in pain, add a few more minutes the next time you practice.  Your body will let you know what you can and cannot do.

 

Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibro, including some gentle stretching exercises that really do help and also a link to What Else Could This Be. 

 

I'm glad you found us and joined in!  You have come to a good group of people who really do care about one another.  Read back posts and ask questions and we'll be here to help you.  Please let us know what you find out.  I'm looking forward to hearing from you soon.

 

Sherrine

Posted 3/2/2009 1:55 PM (GMT 0)
Thanks guys.

Well for example, I walk the dogs on a 1mile course (through my neighborhood) and it takes me 40 minutes (i let them snif here and there) and I told my doctor that I hurt and he told me I should stretch. Are you kidding? It's a 1mile walk for crying out loud and I'm 32 and I should stretch? To me, that's just not normal, not normal at all.

I do pace myself though but even with that, I over do it some days and I pay for it dearly. I worked in the yard at a slow pace taking many breaks and I stopped before I felt tired and yet that night, I couldn't get up until I had been in bed for 17 hours. That was just crazy.

I've learned to pick and choose what I do that day and usually, it's making sure my animals are fed. I have many and I thought about giving them away but that would just depress me. The rest usually waits a long time and the house is not as clean as it used to be but I don't care at this point.

My life has chanced so much in the last year. I used to come home from work, cook, clean, take care of all the animals, do laundry and then still have time to play with the kiddo. Cooking dinner is a great accomplishment for me right now.

My husband and I drove back home from out of town(5hours) on Saturday and I am still in so much pain. I woke up yesterday almost not being able to move my arm/shoulder. I feel like that song "much too young to feel this old".

I saw that thread but I haven't had a chance to read through it yet. I will though.

I know my doctor is being thorough but I feel that since August he went from "this could be fibro" to "well i think you're just depressed". I'm not sure what to tell him.

I'm feeling sorry for myself today but i know you guys understand cry
Posted 3/2/2009 1:58 PM (GMT 0)

Hi and Welcome Marie!!

I'm glad you found us!!  This is a great Forum to gain support and knowledge. 

I hate to say it but it could be Fibromyalgia.  As Sherrine said, your doctor is taking all of these tests to rule out other nasty illnesses like Lupus, RA, Lyme Disease or MS.  Depression is a common sidekick of Fibro, some people have been depressed before the wound up with Fibro, some get depressed as the syndrome continues and some more fortunate folks don't suffer from depression at all.  So, as Patsie said, we all have some different symptoms but we are basically the same.

Patsie did a great job of explaining the exercise issue.  Be sure to stretch and when you exercise do it slowly... what you could tolerate before Fibro might/will be different after Fibro.  I used to be a great dancer, I could go for hours.. now I can do about a half of a slow dance w/ my hubby and that's about it.  I hope that someday I'll be able to dance again. 

You mentioned you have pain in your hips, man oh man, that's one of my spots too.  It's very painful and makes moving difficult.  Headaches are common and poor sleep is another big problem. 

One good thing about Fibro compared to the other nasty diseases is that its not a degenerative disease, like Lupus, MS or RA.  If you get a positive diagnosis and proper medication and a positive attitude will help.  But everyone is different and some get relief more quickly than others.

Please check back and let us know how you're doing.  And don't forget to check out the 2nd thread on the forum.. Fibro 101.  I've learned an awful lot about Fibromyalgia from that thread.

Take care & keep in touch!!

 

Posted 3/2/2009 2:03 PM (GMT 0)
Yeah Patti, I guess that's the "good" thing about fibro, it isn't degenerative. I am thankful for that.

I'm pretty sure with those blood tests, he rules out ms, lymes, lupus. I know blood tests are the end all and be all but i think if it was one of those 3, something would have been off in my blood work. I'm going to ask him on Wednesday what he's leaning to right now. Maybe if i know what he's thinking, I won't be so frustrated. This has been going since June and I went to see him in August I think. I'm ready to get some kind of diagnosis here.

He put me on effexor (which i told myself i would refuse but i let him anyways) and it hasn't changed a thing. I had been on it before years ago when i had depression. It literally changed my life back then so I thought maybe it would again but nope, nothing's changed.
Posted 3/2/2009 2:09 PM (GMT 0)
Marie, I just read what you said about walking the dogs a mile. That does seem like nothing to me tooo BUT it isn't. The dogs tug and it is in itself very tiring to Fibro muscles. Of course you have some depression trying to filter through this thing and figure it out. You have to stop questioning your activities so much and relax as much as you can. This is only experience talking to you. I am one tough girl and slowing down has been bigger than life!!! did you read what Patti said about dancing ?? She is now lucky to get through half a slow dance, stop and think about this a minute. My favorite new saying is "it is what it is". I know exactly where you are at!!!!

Patsie

P.S. try to never let your animals go, it will get better!!!
Posted 3/2/2009 2:32 PM (GMT 0)
Hi Marie and welcome.  I agree with the others, it does sound a lot like fibro, especially since you've ruled out most of the other diseases that mimic fibro.

 

I know where you are coming from with the difficulty in getting a diagnosis.  I have an inner ear disorder, and a couple of doctors diagnosed me with just anxiety.  Well, of course I had anxiety, I was dizzy all of the time, lol.  I finally did get a correct diagnosis, and treating the inner ear disorder did help with the anxiety also.

 

As far as my fibro diagnosis went, my primary doc just kind of skirted around it too.  I finally found a rheumatologist who didn't require a referral, and he diagnosed me with fibro.  I didn't really like him, but once the diagnosis was in my file, my primary doc was happy to refer me to another rheumy who also diagnosed me with fibro.  I'm thinking that maybe my PDoc wasn't comfortable making the diagnosis or treating it himself. 

 

It does seem that, at least for me, it usually took more than one doctor to get diagnoses for conditions that don't have definitive, concrete tests.

 

Also, a veteran member posted a link to a pain chart a couple of months ago, and while I couldn't find the direct link, you can go to www.painfoundation.org and find a pain chart/diary (look under publications).  It may be helpful to take something like this with you to your doctor to help him see exactly what your pain and fatigue are like on a daily basis.

 

I hope you feel better soon.  Hugs - Austen

Posted 3/2/2009 2:40 PM (GMT 0)
Oh Marie, trust me... we all know what you're going through.
I totally agree with Patsie (LOL, I usually do.. she's one smart cookie), animals keep a lot of us here going. We all seem to be huge animal lovers. Dogs, cats, birds, ferrets.. you name it, we love our little zoos. ( I have 2 dogs and 2 birds ), If I didn't have them to remind me that someone needs me sometimes, I'd get pretty blue.. and they're SO dang cute, they bring me so many smiles.
Yes, I know the I'm too young to feel this old routine. I'm 51 and my 81 year old mother can run circles around me. It's very frustrating and depressing. But I thank God I still have her in my life and enjoy every minute we have together.
If it does turn out that you are "depressed" that can be very painful physically too. If you're doctor is taking more time than you think is reasonable than it might be time to seek a new one. Let your current doctor know your frustration and that you don't feel like you're getting proper care and I'm SURE he/she will get up to speed ... they don't like losing patients and maybe you need to let the doc. know you're getting "depressed" from his/her lack of assistance.
Warm hugs,
Posted 3/2/2009 3:01 PM (GMT 0)
Hi Marie and welcome. I hope your doc has ruled everything else out and you get an answer on Wed. Has he done the tender point test on you??? Some docs are reluctant to give a fibro dx. I think it is cause if they have missed something they are afraid of lawsuits. Than there are docs that do not believe in fibro.

 

I didn't get a fibro dx til I was in my 50s so I don't understand what it would be like to have this at 32 but we have many younger than you on here. Mornings are better for me and the more I move the more I hurt and the fatigue hits like a brick wall around two or three in the afternoon everyday. Your mile walk everyday sounds like a lot to me.

 

Our pets are very important to us. I have a six month old puppy that makes me get up and do things even when I think I'm too tired to move. I guess you could call her my therapy dog. smilewinkgrin

 

Hang with us and you will learn a lot and hopefully get a dx soon.

 

luv and hugs

Marlee

 

Posted 3/2/2009 3:45 PM (GMT 0)
Hi! Im a newbie here too, so maybe we are going to learn alot from this wonderful group. I am so sorry that your doc is giving you the "you must be depressed" routine. I have been there, done that and wear the t-shirt. I hope he intends on treating you with the fibro (because i think that is what you have) and if he doesn't believe in Fibro, find another doctor. I suffer with bi-polar II disorder, (which means that I get depressed, then more depressed and I dont have the "highs" associated with bi-polar I) But my depression is worsened because of my situation with these health issues. I have 3 kids, and can barely function. I feel so much guilt, because they have to do so much--that should be MY job to do. Its hard having fibro. Have you read the "spoon theory" on the 101 thread yet? It really helped my husband to read it last night. I am also an animal lover! I have an African Grey parrot, 2 Boston Terriers, 1 Royal Palm turkey, 1 chicken, 5 cats and a variety of other creatures roaming around my home. I take comfort in them, and alot of us do here it seems. Take it easy on the walk, pace yourself slowly. there are just things that we have to sacrifice, even when we protest them in our minds. It has been especially hard on me to stop cooking dinner for my family, but its either that--or I sacrifice kitchen clean-up, or going to the store to shop, or something else. I have to choose every day what I can and cant do, and that is the biggest challenge we all face. Maybe you could find someone to help you walk your animals every other day? That way you can use that energy to do something else that you must do, or want to do. anyways, sorry to ramble on. I wish you the best of luck, and hope you find peace with this doctor, or find one that will help you to move on with it.

have a blessed day,
suanne
Posted 3/2/2009 5:58 PM (GMT 0)

Hi Marie.  I really feel for you.  I had a lot of similar complaints when I was in my 30's.  After all the tests was just told it was not RA, but I did have Raynaud's.  I was always active and did start a stretching routine on my own and eventually with a trainer to learn new things-done correctly.  I tolerated the pain forever but things got worse as I aged.  I'm 63 and was just finally diagnosed a few weeks ago after going to a new doctor. There are many days where I forced myself to do something to get moving.  I always end every kind of exercise with gentle stetching.  This works for me.  There are a lot of dvds for yoga that is gentle or for people with arthritis.  Maybe this would help you a little.  I fully understand your pain with sitting.  That is why I started with this forum.  I have so much pain in the sits bone area that car rides are horrible.  I even had trouble trying to get my doctor to understand where the pain is.  I did get cortisone shots there but they only worked for a short time.  I was sent to a physical therapist who said my hamstrings were too tight, so I have really been doing slow, gentle stretches for this and it does help. Gentle is the key word for this. I have started 2 short exercise/stetch sessions a day-maybe just a walk, then stetch.  Having a dog makes me go for a walk.  Hang in there  I'm sure you will get answers for your symptoms. 

Posted 3/2/2009 8:21 PM (GMT 0)
Thanks guys!

You know the weird part is that I had a sore throat for 6 months until I got sick with the crud and then that went away.

He's a good dr, he brought up fibro first. I think the problem is that I feel ok when I go see him and it's not a bad day so he's trying to see what's up. I'm really hurting right now and I'll be sure to tell him. My wrists and elbows hurt today.

I have 2 dogs, 5 cats, 7 birds, 1 rabbit and a tortoise. i have 2 tanks but they are empty because of the ice storm we had in 2007. I still haven't cleaned and filled them back up and I really want to.

I'm also frustrated because my husband knows I don't feel good but he's not taking on more responsibilities and he doesn't do poop, it makes him sick but my daughter has been helping feed the dogs and she takes care of her rabbit (except the litter box).

I'm just tired :(

I'll see what he says on Wednesday and hopefully we'll get somewhere. He has not done the pressure point test yet (i don't know why). On my back, the ones by your shoulder blades, I always have knots there, it feels like someone is sticking an ice pick in there all the time. My neck and shoulders are usually tight and very sore. Then there are my hips. My wrists/elbows/knees are usually the last to "act up".

I'm glad I found you guys, you guys are a very friendly bunch. I just want my life back. I know it's not going to happen but I just don't know how I'm supposed to do this. When I finish college, I'm supposed to get a job etc. I think I'll be ok to be honest because working is easier than school (for me anyways..lol) and I'll be doing something I enjoy so hopefully that will be ok.

I'm just scared of the outlook and my family doesn't really understand (my parents, sister etc) I'm not sure my husband realizes just how sick I am. I think he's hoping the doctor will say it's something else that will go away but I really doubt he will. This fits so well.
Posted 3/2/2009 8:42 PM (GMT 0)
Marie,
I'll keep my fingers crossed (as agonizing as it may be) for you.
I'm not sure if anyone mentioned (fibro fog alert) the feature in Fibro 101 called "Spoons". It's great!! Please go check it out. It helps alot with the explaining to the family what it's like to have fibro. There's also a "Letter to Normals" that is a good one too.
OK... better go, it's hard to type with your fingers crossed.. LOL!!!
Posted 3/2/2009 9:18 PM (GMT 0)
Hello and welcome. I suffer from alot of the same symptoms. The only advice I can give is even though you are tired or in pain, stay as active as possible. Stay positive and make sure you are always honest with your doctor.
Posted 3/2/2009 9:42 PM (GMT 0)
Marie, isn't this a great bunch of people?  I am so glad you have found us.  The support is wonderful.  I feel better just coming here & learning & understanding that what I am feeling, they feel & have the knowledge & caring support to help me.  I have grown immensely in my understanding of this illness & of myself.  You have received some great advice, maybe you can have your husband read the threads on this forum, mine won't because he doesn't like computers, but maybe yours will.  He can even post here too & we will give him the support he needs because our illnesses affect our families in an emotional way, as much as it affects us.

I have to say when you listed your symptoms I was so shock in how similar we are.  Especially the feeling like the pain & the fatigue are at war with each other & when one rears its head the other resides.  Your sleeping issues are so similar as well.  I was recently dx'd with CFS along with my Fibro.  I used to tell my Dr that I knew when my Fibro was flaring but then something else would come to the forefront & the Fibro would recede & they both have distinct symptoms of their own.  My sleep was terrible & I was exhausted because even when I did sleep it was never refreshing.  I would feel like I hadn't slept for days.  Then that would recede & the pain would come & I would have insomnia.  

I hope you get dx'd very soon.  As others have said if you don't feel you Dr is helping go to another.  Do not give away your animals, they will love you unconditionally & maybe some days you can take them for a short walk.  When I was first dx'd I decided to get rid of anything that sapped my energy.  I had about 60 houseplants & I gave them all away but now I am rebuying them because it is part of who I am.  Working with them helps me to feel connected with my old self & gives me alot of satisfaction.  Don't throw everything away like I did, wait & see how finding the right meds can help you.  For now stay away from the guilt & beating yourself up.  It doesn't help & takes alot of energy. 

Hugs, Denise   

Posted 3/3/2009 2:25 AM (GMT 0)
I just can't give them away. I take the dogs to daycare a few times a week so they do get exercise. The cats, well they come and snuggle when I go to bed. I feel bad for my birds because they don't get to get out of their cages anymore but I talk to them. The tortoise is the easiest :D

I love being outside. It's like I forget that I'm hurting. I've been working on my yard and I can't wait to get the plants and plant them in the next few weeks.

I'm glad that someone else has that weird thing of receding symptoms etc.

I'm going to have a heart to heart (well that's the plan) with my doctor and see what he has ruled out and what is still on the table.

We all went for a walk tonight. I didn't think i could make it but i did and i'm proud of myself. Being with the dogs does change everything and I just couldn't part with any of them. They truly are my babies.

Thanks guys! I'll be back on wednesday to tell you what the dr said. I have got to finish a book cover project i have going on and tuesday is a busy day with ballet lessons for the kiddo.
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