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Old 04-22-2012, 11:16 PM   #1
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Is Fibromyalgia pain constant?

I have pain all over my body all the time. I don't have what you call a flare.
It is all the time - Morning to night. Not even one day of relief. Horror.
No tender points. I don't have a day without pain all over the body.
On top of that I have constant pain in the neck from a car accident.

Both types of pain are horror. But any of you who ever had a chronic neck pain knows exactly what I am talking about.
The neck pain I now understand called myofascial pain.

 
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Old 04-23-2012, 09:23 AM   #2
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Re: Is Fibromyalgia pain constant?

I always have constant pain. When its under a 5 its like I almost have no pain, if that makes sense, since I usually have a 10 level of pain. My muscles are always knotted up and I have spine and back issues and to have a combo doesnt help as the muscles make the spine, back worse and the back, spine make muscles stay knotted up. Hahaha if that makes sense. Then I have TMJ and other issues so everyday is a new one as I never know what to expect when I wake up

 
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Old 04-25-2012, 07:06 PM   #3
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Re: Is Fibromyalgia pain constant?

I'm sorry you are hurting like that. It is no fun and I can totally relate. I have pain everyday. I would say my daily pain level is about a 4 or 5. It is mostly a burning all over. I describe it as a freeze burn. When it worsens I would say it feels like hot coals burning me! When I start to flare I am in so much pain I go into hiding (my bed) literally. I cannot function at all. I can't think straight or talk right. My kids like to joke to others about how funny their mom is when she is in a flare. How they know I'm flaring?.... They tell everyone how I drop dishes or lose my balance walking through the house (very slowly) or how they are trying to unscramble whatever sentence I just said to them. Or the tears they see escaping from my eyes. Or while driving I completely forget where I'm at or where I was going, or why am I even in my car! When I get blank stares from my kids it's my que to go straight back to bed and try again tomorrow. I can laugh about it on my good days but really, it's kind of scary and sad. I have 4 boys and the youngest is 12 with Tourettes and severe migraines and some days is so hard just to focus on taking care of him. He has to be homeschooled due to the severety of his migraines which are debilitating for him. I do everything I can to stay focused enough to help him and get him through his bad days too. Some days I don't know how we got through! I have also been dealing with increasing neck pain and back issues and recently had some MRI's and they were certain my cervical area was going to show problems but it was perfect and my problems were in the thoracic and lumbar area instead. I kept telling them how much my neck hurt and they said it was from the fibromyalgia. Hope your days get better. Hang in there.

Last edited by buddikay; 04-25-2012 at 07:07 PM.

 
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Old 04-25-2012, 09:36 PM   #4
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Re: Is Fibromyalgia pain constant?

Thanks mom477 and buddikay. What meds are you taking for sleep or to function?
Buddikay, this pain in the neck could be caused from myofascial pain if you have been in a car accident.

I hope you all get better.
Yesterday I was sleeping 5 hours. I was taking vitamin E and clonazepam. but it doesn't work that good anymore (the clonazepam) even when I take 4mg - doctor agreed.

 
Old 04-26-2012, 08:53 AM   #5
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Re: Is Fibromyalgia pain constant?

Thank you, thank you, thank you! Finally someone is expressing my pain and the way I feel. My neck constantly hurts with pain radiating down to both sides of the arms and is excruciating. Currently taking 15 mg. M-S Contin, and vicodin for the break through pain. Ladies, you have my sympathy. The meds take the edge off just a little, but I'm constantly in pain. Add to that, still holding down a full-time stressful job, which isn't doing me any good either. Does anyone know if there's every going to be a solution to this pain? I pray constantly to the Lord for relief from this pain. I say why me Lord, and he answers and says why not you? My trusty tennis ball helps a lot. That's my version of a mini-massage. Guess we all just have to hang in there.

 
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Old 04-26-2012, 10:21 AM   #6
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Re: Is Fibromyalgia pain constant?

In the beginning I took all kinds of meds. I was a mess. It took several years to finally swallow my pride and quit doing the normal things that would trigger my flare-ups, like cleaning house top to bottom before familiy or guests come to visit. That was something I used to have no problem with. My doctor gave me some good advice one day. If you are going to hurt, pick what is worth hurting for. For example, I have 4 boys. They wanted to go on a trip to the snow. I could either clean my house (which would flare me for 2 days), or do the laundry (you might say laundry? Yes! Just pulling the wet clothes out of the washer some days was agonizingly painful for my hands, arms & back), or take a preventive med in advance and go to the snow and enjoy the day spending quality time with my family and building memories for my kids. I would usually take an NSAID or naproxen together with a flexeril to minimize spasms and vicoden for breakthrough pain to get throught a day in the snow, and I was only going to be watching, take pictures etc... I cannot go sledding! But it was important to just be there with the family, for the kids and husband. If I hurt real bad I would take ambien to help me sleep that night and I always would plan on NOTHING to do the next day.So that is now my motto. Pick and choose what is worth hurting for. I work part time and that is something that is now put on hold as I am going through this painful episode. But it is temporary. Now my boys are 12, 13, 17 & 19 so I get alot of help around the house. But you can imagine how busy I still am with those kids. My fibro went into a sort of "remission" at the 10 year mark from when all my pains started. I can't explain it. I did nothing different. Medications and prayer when I would hurt. During a year a half of almost no pain at all I was able to start walking more, and then jogging and roller blading/biking with my boys. They were so thrilled to do this with me. I lost 30 lbs and started toning my muscles with little weights. I could run up and down my stairs. It was like a miracle! Then one day I went to dentist to put a crown on a tooth and when he was numbing me the needle hit something that jolted me like a lightening bolt. I was crying and in pain and they had to stop for a bit. Then it got all numb, I figured I was ok and they continued. By that night the numbness wore off and I almost ended up in the ER. The pain was excruciating and I had vertigo so bad the dizziness made me very sick I could not turn my head or I would vomit. The hopital gave me anti nausea meds and other stuff to help, never had that happen before, had to get narcotics for pain relief. I was in horrible pain for several weeks on my jaw and into my ear and head. All my fibro symptoms came back when that happend. My doctor said he must have hit the nerve along my jaw line and it was a shock/trauma to my body and it responded in kind with all my fibro symptoms coming back. So for the last 2 years I am now back on neurontin, flexeril, vicodin for breakthrough pain and naproxen and percocet as needed as I have recently had spinal issues due to discs protruding into spinal cord that caused a flare up so bad I was in wheel chair and ended in ER and they kept thinking it was my fibromyalgia. I had to insist with my doctor it was NOT and please find out what is wrong and they finally did mri and figured out I was RIGHT! So don't always assume all your pain is fibro if something feels really different to you. I had numbness from head to toe on right side of my body and the burning was more intense than usual and I knew it was not the fibro but it sure triggered my fibro to go into high gear. I apologize that this is so long but I hope my story can help someone. I still have a few things I enjoy. I was working part time but can no longer do it due to the pain and brain fog is so bad at times it is just impossible to work. I don't know how others are doing it. My husband keeps telling me to apply for ssdi but I don't think I can if I worked very minimally the last few years due to pain. Only 2 hours a day during a school year (I worked at a school) till finally I had to leave my job because it wasn't worth the pain it caused. It's hard financially but we are surviving somehow. l sing and play keyboard in our band at church. And I work with teens in a youth group. Have been doing that for years and it is something I choose to hurt for because it is something I value...helping others, but with the fibro symptoms going through its cycle and with my spinal issues now I am taking some time off from everything to heal. It is hard to stop doing the things that bring me joy but I know it is temporary. NEVER GIVE UP! Each day is a new day!

 
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Old 04-26-2012, 11:14 AM   #7
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Re: Is Fibromyalgia pain constant?

Buddikay- have you been tested for ms lately & by a Nuerologist that specializes in ms? The slurred speech, droping stuff or stumbling, extreme memory probs... I know ms symptoms are allot like fibro & many people have both... But I wonder I you have ms...

I have the constant neck, shoulder & back pain. I grew up in an abusive home and there was one injury that caused me neck, shoulder, back & chest pain that lasted a few months when I was a child. Then a quad wreck a few yrs ago. Both times never seen a dr. So I think those accidents cause me the pain now because of fibro. I ha my neck x-rated the other day so excited to see what it'll show. Also get the migrain like headaches which I wonder if it's neck related.
I talked to a lady who's had fibro since the 80s & also seen an excellent doctor. Finally getting somewhere! I'm like you guys, feels like my whole body is always sore. I'd say I'm a 6 on good days. I always say sore but i think for a normal person theyd call it pain. For me pain is a 9 & 10. Flares are when the pain is unbearable. I usually get very sick & will be vomiting all day. Sometimes if I'm lucky only 2 or 3 times.
I also have weight issues. It piled on after my last child. Told the dr I don't understand it because I have exercise as one of my main priorities & exercise often, eat healthy & small portions. Told her how I'm only getting worst & I'm doing everything right. She asked if this is control in my life, I said yes. SO, she tested me for what is called growth hormone deficiency. She told me to research Fibromyalgia growth hormone deficiency, & I really think I have it. It is common with fibro & I really hope you will all read about it also! In the meantime I'm taking more Omega 3, Magnesium, Zinc & Vitamin D which helps balance it also. Figured it wouldn't hurt to try... Btw, my first pregnancy seemed to trigger my probs 13 yrs ago & after my 3rd pregnancy everything got worst. So I always wondered about hormones...
Also, she said you should have blood work every year & was irritated my Rhumetologist hasn't done that... So she ran more tests. She's also going to look at my MRI, I may have to have another one.
Anyhow, my Rhum keeps telling me it's fibro, doesn't listen or even seem to care. I'm tired of never feeling good & only getting worst. All I'm given for pain is tramadol which takes two hours to do anything & doesn't do much. I take it only when really needed or gonna be a busy day.
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Old 04-27-2012, 12:37 AM   #8
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Re: Is Fibromyalgia pain constant?

Hello Foxy Brown, have you ever I mean ever been in an car accident and had a whiplash?
Even if it was 20 years ago.

You might have what I have. It's called myofascial pain. For 6 years with my doctor telling me I imagine things(I wish!), Pain doctor telling me it must be emotional (I wish!)
I read here in this forum there is something called myofascial pain. I must have that in my neck. Now the neck and all my body hurt.

The deal is that my neck, most of the time, hurts only on one side.

I also ask god why me? really why me?. I can tell you that most of the good people suffer the most in life. Really. Those who are the most helpful people in this world suffer the most. THat's how life is.

Again, Foxy, you might have myofascial pain.
Do you have tender points? I don't even have tender points. But was told that is the new way the now diagnose fibromyalgia - no need to have tender points. Really.

Again, like I said before, don't go to any chiropractor!.

 
Old 04-27-2012, 12:40 AM   #9
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Re: Is Fibromyalgia pain constant?

thefarm- I have not been tested for MS but several people had mentioned it to me. I don't even want to go there. I have so much to deal with as it is with the FM and now my spinal issues.
I am surprised that all they give you is tramadol for pain. I have found neurontin (gabapentin) to be very helpful. It's not a pain med but actually a seizure med but it works to block the nerve pain that many people with fibro suffer from. Maybe you could mention it to your doctor. Sometimes doctors can be offended if you try to "help" them with your treatment. But a good doctor will actually work "with" you if you mention you heard this med works for others with fibro, and is that something that might help you. I am very fortunate that I have a good doctor now who is actually a friend of ours and he listens to me and see's me getting out and walking when I can (he lives in my neighborhood) and knows my goal is to try to be active again. He works with me on a treatment plan when I do get stuck in a painful flare cycle. I hope they are able to figure out all that is going on with you. Keep us posted.

 
Old 04-27-2012, 12:59 AM   #10
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Re: Is Fibromyalgia pain constant?

Nochange- Sounds like your doctors are not being very supportive. When I first had this hit me I went to several different doctors over the course of 2 years. First they said the pain was in my head and I must be depressed. Well I sure was getting depressed after dealing with all this pain for 2 years and nobody could explain what happened to me. Finally it was a rheumatologist who diagnosed me after a series of tests to rule out other things first. At first the doctors and rheumy thought I had lupus. Did they actually give you the diagnosis of fibromyalgia? Or are they still trying to figure it out? It can be a long process. And the issues with your neck can trigger fibro to worsen. It's like a domino affect. Hope you start to feeling better and get the help from the doctors that you need.

 
Old 04-30-2012, 09:31 AM   #11
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Re: Is Fibromyalgia pain constant?

Quote:
Originally Posted by buddikay View Post
And the issues with your neck can trigger fibro to worsen. It's like a domino affect.
o.k, what are you trying to say? I have in a car accident. I had a severe whiplash and I can't turn back time, you know. My neck hurts me and yeah, it's very bad. But what are you trying to say? Have you ever experienced neck pain? sometimes you feel you are in another world.

You are a lucky one if you don't have constant neck pain.
I happened and I can't turn back time.

 
Old 04-30-2012, 09:53 AM   #12
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Re: Is Fibromyalgia pain constant?

Quote:
Originally Posted by nochange View Post
o.k, what are you trying to say? I have in a car accident. I had a severe whiplash and I can't turn back time, you know. My neck hurts me and yeah, it's very bad. But what are you trying to say? Have you ever experienced neck pain? sometimes you feel you are in another world.

You are a lucky one if you don't have constant neck pain.
I happened and I can't turn back time.

Fibro can make neck issues worse. I had 2 car accidents 15 yrs ago. My head almost went through the windshield on the first one and I got really bad whiplash with the other accident. Then 10 yrs ago I was washing my car at a car wash and all of a sudden couldn't grip the sprayer and my head felt extremely heavy and I was pretty much stuck on the couch and docs thought I had a stroke cuz 1 side of my body was numb. MRIs showed 2 bulging discs but not that bad etc etc.

I have a TON of pain in my neck but having fibro makes it hurt worse since the muscles are always tight. Apparently my neck isn't bad enough to where I should be having this much pain but then again I have a 2x2x6 mm cyst inside my spine in my neck and going to get that looked at.

Anyways my point is not all people that have fibro have neck issues but people that have both issues COULD have more pain than people that have fibro but no bulging discs.

All we know is how we feel ourselves and not what others are feelings.

I'm pretty sure I had fibro before the car accidents since I had always hurt since I was a teen.

Last edited by mom477; 04-30-2012 at 09:55 AM.

 
Old 04-30-2012, 10:34 AM   #13
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Re: Is Fibromyalgia pain constant?

I have never been diagnosed as having myofascial pain. I have, on occasions, had TMJ. I did try gabapentin and it made me so loopy, I had to discontinue. Is there anything that can be done for the neck pain? At first, it was just on the right side of my body. Now it has spread to the left and the bone right in the middle of the back, down to both sides of the arms. There is no relief for this pain. Not to mention the feet pain. And, to top it all off, I'm still working full time. Only the good Lord allows me to make it through the days as I sometime have brain fog. I am lucky in that my rheumy works with me but has constantly told me he doesn't know what to do next. I think we've tried every medicine out there. We've done blood work. Vitamin D level was border line normal. Everything else was normal. If someone has come up with something to alleviate this pain, please let me know. Thanks. Again meds are ms-contin, vicodin for breakthrough pain (which works much better than the ms-contin), flexeril, and amytrypline for sleep.

 
Old 04-30-2012, 10:51 AM   #14
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Re: Is Fibromyalgia pain constant?

I have never gotten relief from the neck pain. TMJ I have had since I was a teen as well but has only been a issue last 3 years and nothing has been asked about it even though ive brought up.

Last edited by mom477; 04-30-2012 at 10:52 AM. Reason: brain fart

 
Old 04-30-2012, 11:59 AM   #15
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Re: Is Fibromyalgia pain constant?

I do think fibro make old injuries much worst.
For years after i injured my back it hurt but nothing like when fibro hit. My back pain getting worst was my first fibro pain... Then my neck & surrounding areas. But like I said, I've had injuries so curious what damage is done... Fibro make arthritis worst...
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Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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