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Old 08-30-2011, 08:05 PM   #1
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Just diagnosed today and feeling sore and down

I've lived with this uncomfortable pain since I was a teenager. Arthritis runs in my family and some had similar descriptions of pain. I always thought it was just a genetic issue until my new therapist asked me to go and have my doctor check. The blood test for rheumatoid arthritis was a false problem--and an issue the hospital had been having recently and reasoning why they just discontinued testing for it there. My doctor sent me to a specialist to confirm the diagnosis.

Anyway, I walked to my appointment today in fact, which already made me feel a bit uneasy, but I was expecting a diagnosis of rheumatoid arthritis. The doctor was very nice and explained the difference between the two but said she already had an idea from looking over my medical records. She checked me out and began moving my legs around to look at my joints. It didn't really hurt so I was thinking the appointment was going well. Then she pinched or held(?) the muscle just above my knee and asked me to tighten the muscle. Smiling, I did was she asked and then I screamed. My eyes flooded with tears and I grabbed hold of my leg it hurt so bad. She said she had never had anyone scream when she was checking for fibro before like I had. I felt so very embarrassed and confused because I thought she was still checking the arthritis since it was near my knee. I have a lot of sensitivity issues, especially with medications, and being around a lot of people -- makes me very lethargic. She explained that I just have to do things differently and slower than average. I've always been one to push myself till I burn out, need a lot of time to recover and then do it all over again. I was diagnosed with anxiety, depression and post-traumatic stress disorder by a psychiatrist and she thinks it is all linked.

I'm still sore from being poked at and I keep having the replay in my head of the pain in my leg which was and still is the worst part. I also wish I had not been alone at my appointment. I thought I was just going to go in and everything would be normal and fine and I guess I'm a bit shocked about how it went. My mom has always just dealt with pain and prefers to not take medications, which is kind of how I am. I only take stuff as a last resort or if I absolutely have to. The doctor said exercising, like the walking I did to and from my appointment will be good, but I need to do it every day. However, I just want these spots to stop aching now.

Anyway, does anyone have any advice for this newbie? I still need to do follow ups with my regular doc about this and my therapist as well. I have a good support system, I just get stubborn and don't do what I'm told exactly. Which I really have to change, I know. This has just been a really hard day over all and no one in my family really knows about this stuff so I feel a bit dumb and like I'm walking around blind about it. Not to mention, it would be nice to talk to someone who understands this a bit better.

 
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Old 08-30-2011, 09:07 PM   #2
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Re: Just diagnosed today and feeling sore and down

Hi, welcome to the board.

It's a shock being diagnosed with fibromyalgia, but it is good to at least know the truth about your condition. I've had it since age 18, diagnosed age 20, now age 30.

There are a number of treatment options. Some antidepressant-related medications can change the way the brain processes pain. Drugs like Neurontin or Lyrica can calm nerve activity.

I also recommend exercise. Start gentle of course, but do it. The warmup portion of a Pilates routine is a great way to loosen up and ease my back and neck muscles.

Meditation may be helpful. And I think the doctor is right about learning to pace yourself. You'll get more done in the end!

Finally, there is hope. Fibro doesn't have a cure, but by learning what works for you, you can feel a lot better. At 23 I was in pretty bad shape, but now my fibro pain isn't usually a major issue. (I've had a few OTHER medical issues over the years, but that's another story.)

 
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Old 08-31-2011, 07:54 AM   #3
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Re: Just diagnosed today and feeling sore and down

welcome to the board,
giggled at the name you chose. good one! feels that way too at first. personally i think you chose the right place to not be alone in this. we are gentle, loving and supportive here.
you are not the only one to scream while being tested. me too and i wished i had taken someone along. it took about a week for my body part to relax again. sure got my attention tho. since you have a shrink that would be the best place to begin learning how to live in this new body you have. i spent 7 years with mine, time well spent.
i learned to slow down and be cool with going slow. in fact i like it. i get more done and see little things i missed when i was the go get it girl.
very glad you do not have RA. fibro is not without limitations but you can learn to live in harmony with it.
peace,
bluelakelady

 
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Old 08-31-2011, 08:39 AM   #4
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Re: Just diagnosed today and feeling sore and down

I know it must have came as a shock to you to get the FM diagnosis.

I was diagnosed when I was 19 after 2 years of symptoms. I ended up in a wheelchair due to this. I'm 31 now and, I'm happy say, I have virtually no symptoms.

I have learnt to recognise my 'warning signs' i.e. knees start going, fatigue and other pains. Like the others that have posted, I found it difficult to slow down and found that exercise helped.

Just take each day as it comes. I had the never ending cycle of sleep deprivation, pain and depression. I personally found that herbal supplements were more effective than convention medication. I used to take passiflora to sleep and arnica to help with the inflammation. I was lucky to have access to a homoeopathic doctor for free.

I wish you all the best and if there are any questions I can answer, feel free to ask. This board has been an absolute god-send to me in the past.

Hugs again

Pixie

 
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MA_grl (08-31-2011)
Old 08-31-2011, 09:52 PM   #5
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Re: Just diagnosed today and feeling sore and down

Thank you all for replying. It was definitely a rough night and I ended up soaking in the tub a few times because I was so uncomfortable after being poked at. Had a good cry, but I think over-all that made me feel a bit better getting out the stress that was piling up.

I tried talking to them both recently about my diagnosis which didn't go over well. My mom gave me her opinion of how she feels about pain and taking medicine which I hadn't even brought up. My dad just doesn't get it, but I can't really blame him. I tend to take care of both of them, my dad more than my mom. My mom only recently had to get a restraining order on my step-dad so I had to run around with her to sign her up for help, therapy, ect. I definitely feel like I did too much with that, but it needed to be done and she had no one else to help her.

Yes, I like my screen name! It's part of a song lyric from Marion Raven. She use to be a part of that teen pop group M2M a long time ago. Anyway, her song "Heads Will Roll" has the lyric "it's a jungle out there it's gonna eat you up and strip you bare". It has a nice rock feel to it and sometimes it relates to how I feel at times. Like I am bare and can't handle things or don't have the means to do so at times.

I haven't read too so far by the way of articles on fibro yet, but I know it's good to be informed. Do any of you have suggestions on that? My therapist suggested it when I gave her a call. My friend right now doesn't understand what I am going through which is a bit rough. It's mostly my fiance's family who is the most supportive. Anyway, she thinks that it is all the stress and people putting ideas into my head that I have these problems. I did think about it, but I realized she is the type to have a symptom, go look it up online and think she has some weird disease or issue. She's told me numerous times when she has done it and it freaks her out and then it goes away and realizes it wasn't serious. So I think that is where our communication breaks down in that sense. My fiance is relieve. He now knows why sometimes I curl up in a ball when he is just trying to be sweet and gently rub my back. At times it has felt like he was digging into my muscles or twisting them when I am sore and I know he only wants to help. He understands now though which is such a relief!

Sorry for the long rants. Again, I am a bit new to this. I really appreciate being able to talk to you guys though and maybe learn some more about fibro as I go along and have questions. Thank you so very much!

 
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Old 09-02-2011, 12:12 PM   #6
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Re: Just diagnosed today and feeling sore and down

I've found that no one understands unless they have it. Some might "get it" but never truly understand. My mom & dad don't get that I'm 37 & filing for disablilty. I "look" fine. I don't look sick. They try to understand tho & I am grateful for that. Keep your chin up & pace yourself when you know you have a bunch of errands to do. If you can, split them into 2 days or do a morning run, rest, & an afternoon run. I have to do that all the time.

In regards to informational sources the National Fibormyalgia Association has a lot of good information. They also have an e-magazine. They can also link you to any other information you may need.

 
Old 09-02-2011, 03:23 PM   #7
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Re: Just diagnosed today and feeling sore and down

Welcome to the board...

It is difficult when people dont understand this condition. It took about 1 year for me to be diagnosed. I was dx about 4 years ago...I think?? Im foggin so dont quite remember...lol..

Are you on any medication for it?

This board is a great help...The people here are wonderful and understand...

Dont worry about rantting...RANT ALL YOU WANT!!! We are here for you!!

I hope you feel better soon!!!
xoxox
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Old 09-06-2011, 02:15 AM   #8
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Re: Just diagnosed today and feeling sore and down

Sorry for not replying sooner.

Yeah errands are hard to split up for me because if someone sees me or knows I am going out, they automatically assume I can run their errands or bring them places as well since I will be out and about anyway. It makes it easier for them, but not for me. It's always been like that though. Saying "no" is very hard for me because if people get into trouble or don't get things done, I think it's my fault because I could have helped and didn't. Then I just become overwhelmed with guilt.

I am not on anything now for medication and for pain I don't bother too much with tylenol because it doesn't work (I actually have a blood disorder, my blood doesn't clot very fast so I can't take ibuprofen or aspirin). The last thing I was on was lexapro and when they increased the dosage to 20mg, family and friends were noting I was becoming a "very crude a miserable person". I don't like being off of antidepressants though because the pain becomes worse.

I'm at a new facility getting therapy this year because I was switched to medicare and they don't want to cover any of the medications I was on when I was feeling good and feeling good about starting a normal life. My plan was actually to get off of disability and get a job and I just got set back to square one again after a good 7 years of work. It has been very frustrating and I am learning how awful and horrid this system is. My old state health care provided better services than medicare and now I sit in an office that is cruddy and recently ridden with water damage... People there are so depressing with lack of happy facial expressions and I'm really not liking it, but they're the only place in town that accepts my insurance. I would have to go about an hour away and get transportation to the next nearest place, but the busing system I have used before has forgotten me multiples times including in Boston which is almost 2 hours away, except for one time. Even though they were suppose to bring me to and from my appointments and confirmed this with me, I often have to find my own way back as they screw up the paperwork and leave me stranded. I have a car, but I honestly can't deal with driving long distances... Especially every week.

I guess I can't blame my therapist though I mean she seems very nice and she was the one who told me to go get checked for this. If I hadn't been forced to change medications and therapists, I probably wouldn't have known. So I guess that's the silver lining?

I am definitely feeling that downward slope and the brain zaps from being off of the medicine almost 3 weeks now. Sometimes fish oil seems to help with the funny feeling in my head, but other than that I am really lacking motivation and just want to sleep a lot. In fact, I've been falling asleep sitting on the couch or in the chair at the table which is unusual. I just try to tell myself that I just need the rest right now and try to not over do it. It still bugs me though. My dining table is an absolute mess and I have a bunch of organizing in the closets to do for the cold weather. I guess I just hate feeling dysfunctional, but I need to get over it. Somehow, lol. I know I can't expect it to go away over night but it would be nice if it did.

I have two online classes that start today. I just can't deal with being around a full class of people with the way I've been feeling which I hope will change by the spring semester.

How do you guys deal with your daily tasks and jobs? I was told not to take naps because it makes the sleeping schedule worse. Do you just tell people and hope they understand or do you still find you have to push yourself through some things just to get things done on time?

 
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