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Posted 9/2/2008 4:13 PM (GMT 0)
The doctor thinks I have fibro, but I am not sure if it would be.  I have a lot of the symptoms in the fibro 101 article, but the actual pain seems uncharacteristic.  From what I understand, it is supposed to feel sore, and then hurt a lot to touch the sore areas?  Even the lyrica commercial mentions aching and tenderness.

What I have is the most terrible muscle pain ever, it's like my muscles twitch and spasm until they lock up, and I feel like I'm being killed when it's occuring.

-If it's my neck, it will feel like someone is trying to rip my head off of my spine because the neck muscles are pulling on themselves and hurting so badly.  It will usually spread to one side of my face and make it impossible to chew because my jaw will be unable to open, or unable to shut, depending on my luck with which area of my face muscles get affected and end up locking up.

 -If it's my back, it feels like the muscles are pulling to the sides so strongly that my back is going to split open, and it hurts to breathe a normal breath.

-If it's my hands, it feels like I'm being stabbed between all of my fingers and in every joint of my fingers, and it literally feels as though my thumbs are being broken and then ripped off of my hands.

-If it's my leg, it feels as though the leg is being amputated because the muscles in my thighs seize up so badly.

In all of these areas, whenever I hurt my muscles are so stiff that you can literally touch them and feel that they are bulging and hardened and stiff.  They have me on flexeril every day, so that seems to help somewhat, as I do not have all of those horrible pains going on at once like I did when I went to see the doctor.  I will usually have one area spasm and hurt and lock up every day though, so there is still some level of intense pain that I experience every day.

Is it supposed to hurt this bad with fibro?  Or is it just me?  I really hope it's not normal to feel like someone is amputating your body parts, I cry to think that so many people would feel that kind of pain for the rest of their lives because they have fibro.

Posted 9/2/2008 4:23 PM (GMT 0)
How long have you been feeling this way? How long have you been on flexeril, what dosage and how often do you take it? You may want to ask for a med that will help ease some of that tension in the muscles, like ultram. Is pain your only symptom? I am sorry that you are feeling this much pain. Keep asking questions, read about FM when you have the chance and feel up to it. Keep asking questions here. Its a great forum.
Peace!
Posted 9/2/2008 6:16 PM (GMT 0)
Hi Map Lady,

 

We all have different levels of pain.  Some more intense than others.  But we still all have pain.

 

You might be in a flare right now.  Like Sera asked, how long have you had this pain to such a severity?  And flares are not predictable, they could last from a few days to a few months. 

 

Like Sera said also, you might need something to fight the pain.  I would talk to the doctoe about this and let them know how you are feeling.

 

I hope that you do feel better soon.

 

Hugs, Karen

Posted 9/2/2008 6:47 PM (GMT 0)

Oh, good questions, I should have thought to include that in my original post.  I have been having pain problems for about 20 months, mostly off and on until recently.  It was usually just isolated to my face, and affecting my jaw, or it would only affect my right leg, and those areas being hurt and locked up would last for months and the doctors would load me up with steroids and send me to physical therapy and it would get better for maybe 2-3 months but come back again.  Occasionally my back would experience the someone-is-tearing-me-in-half feeling and it would go away after a couple weeks.  My hands would get the stabbing problems and the excruciating thumb pain but it would usually only last for a day and then magically go away.  For some reason in this past month I started to get all of the muscle problems together, only they wouldn't go away, and it eventually got to the point where I had horrible pain in every muscle and joint except for my right hip, so the doctor was like umm ok you should go to the rheumatologist, like...now.

The rheumatologist said I almost certainly have fibro and that I might have developed fibro because I had a major surgery back in december, and that surgery was also while I was experiencing a severe illness that took months to recede, and that my nervous system could have become over-sensitized from all that constant attack and trauma to my body and it may be reacting very badly to any small pain stimulus now.  He said since I wake up a lot in my sleep from it hurting to lay down, that the flexeril should help with sleeping and with relaxing the muscles when they lock up and hurt so badly.  Although the flexeril did not help my face or leg problems in the past, for some reason it seems to be helping now.  I only take 10mg right before bed.  Like I said, I feel much better than when I wasn't on flexeril, but I still seem to develop a locked-up muscle each day and it hurts a whole bunch.

I have tramadol for when I'm in lots of pain, but I don't have any refills for it so I save it for when it feels like I am being murdered, and it really helps relieve the pain.  If it just really really hurts and I want to cry, I don't take the tramadol because I have a limited supply, but that is frustrating in itself.

I didn't understand why it would hurt so badly, I wasn't sure if it is normal or not.  I kind of gathered that most fibro patients have pain every day, but "it feels like someone is amputating parts of my body" didn't seem to be a type of pain level that is common.  If it is normal, I am going to ask the doctor if I can get a refill of the tramadol, otherwise I am afraid of sounding like a drug addict if I ask for more pain pills  sad   I can't take tylenol because I am horribly allergic to it, and I have crohn's disease so whenever I take ibuprofen, aspirin, etc it makes my stomach or intestines bleed.  It's hard to get any medicine at all that I can even safely eat, let alone help with the pain, so I am not sure what to expect.

Posted 9/2/2008 7:58 PM (GMT 0)
map,

 

Everyone is affected differently by fibro.  I know of some people who are painful, but they can still function normally, and some people are practically bedridden.  I think most of us have felt like they wanted to amputate a limb at one time or another to get rid of the pain. eyes   For me, it's usually my legs, but it really depends on the day.  For instance, today, I feel like amputating my whole body-but I don't think that's possible.  Rarely do I ever cry from pain-because it's become so normal to me.  But, today, I can't help but cry because I hurt so bad. cry

 

I would definitely ask your doc for more Ultram.  In reality, it's a fairly low-addictive drug (I'm not even sure if it is controlled, yet-it didn't used to be).  I completely understand your worries about being perceived as a junkie-because that's what all people with fibro are, anyway, right? rolleyes    Sorry for the sarcasm (well, I'm always sarcastic, but I'm a little extra sarcastic, today-I think it's the pain).  Seriously, if the flexeril isn't working, tell your doctor.  Maybe he can give you something else (like Ultram) to make you more comfortable.

 

Anyway, I hope you find some relief, soon! :-)

Posted 9/2/2008 8:18 PM (GMT 0)
I feel your pain! shakehead

Really - I wonder myself about my "fibro" diagnosis

for similar reasons, as some symptoms fit - others

don't...I have no joint pains, no "trigger points"

no morning stiffness.

Just all day - all over - diffuse grinding dull aching PAIN

that starts an hour or so after a poor nights sleep

(which is every night - tried many sleep meds) and rises

through the day, only calming down late in the evening.

I am trying different pain meds desperately trying

to get back to work - Tried Tramadol, not much relief

lotta brain fog - tried Skelaxin, not much relief, tried

Tylenol 3 (5 oxy 325 acetomeniphen) which is the best

yet but bad side effects.

Post Edited (Enochroot) : 9/2/2008 4:57:49 PM (GMT-6)

Posted 9/2/2008 8:44 PM (GMT 0)
Hi MapLady and welcome to the fibro family. My pain has changed so much since it started and continues to change. I get up with no stiffness and feel a small amount of pain and with every movement during the day it continues to get worse as does the fatigue. Sometimes it is dull aches in the muscles, sometimes it is sharp pains and sometimes it is burning pain, I never know from one minute to the other what I'm going to feel. Right now I have a combo of everything going on but the weather is changing and storms coming up from the hurricane. I have sore spots all over my body like I have been beaten.

 

I wish this wasn't so complicated but it is. They probably only gave you one rx for tramadol to see if it helps. My doc does that when I'm trying something new. I haven't had much success with tramadol but I'm glad it's working for you. That's the thing with fibro what works for some won't work for others.

 

Write down any new symptoms and keep a pain journal to take to your doc the next visit and get his opinion on any new symptoms.

 

luv and hugs

Marlee

Posted 9/3/2008 6:59 AM (GMT 0)
Hi, I know how its feels, my doc use to refer to it as achy muscles, but it was as if someone was trying to rip the muscle from the bone my arms from there joints, my neck was like it was on fire, and had severe thigh spasm around the clock.  It took along time to get them to take it seriously but now I have it under control but it is still always there.  Cant work , sitting uncomfortable and need a pill before I can lie down but pain levels are now manageable.  I see a pain specialist who specialised rheumy, strange.  sue2z cry cry cry
Posted 9/3/2008 9:05 AM (GMT 0)
Hi

I have had Fibro for 3 years now and an increasing number of my friends and associates have developed it over the last 5 years.

I am a political researcher by profession, so it seemed natural to read some of the vast number of research papers out there. The qualititative differences are amazing.

Of all that i have read, I would recommend papers that originate from a chap called Professor Garth Nicholson (There are several others out there now that have validated his research. There are however those that have undertaken research that does not support his findings. If you read into the methodologies of each piece of research, it becomes apparent that whilst Nicholson and those that agree with him utilised highly accurate, state of the art testing methods, those that did not confirm his findings, for reasosn know only to themselves, used testing methodologies that could fairly be described as not that accurate and potentially obsolete). He offers a cause for the problem, which I am now qiuetly confident to be correct. He also offers a treatment protocol, which i can personally confirm, gradually reduces the pain. After about 4 weeks, my muscle and organ pains depart, though it takes much longer to reduce pain twinges in the bones etc. The doxycycline that he recommends is hard going for 10 days or so, but it really is worth it from that point forward.
Posted 9/3/2008 10:38 PM (GMT 0)
I have seen some online write ups by Professor Garth Nicholson,
I am very curious - Can you describe the protocol? How long have
you been taking doxycycline? How long are you expecting to take it?
Posted 9/4/2008 1:47 AM (GMT 0)
Talk to your doc about the Ultram. Mine gave me 30 pills with no refill. When I went in for a follow up 6 weeks later, I asked for a refill. He gave me another script no problem. Up until recently, I was able to control my pain without meds. I developed another condition that put me over the edge so I asked for help. Hopefully, this other condition will resolve itself within a few more months and I can go back to my old "normal".

Tylenol has never done anything for me and I can't take NSAIDS due to ileitis. I explained that I needed something for pain and we made a plan. He was afraid that I'd start to depend on the pain meds and develop a tolerance eventually requiring more or stronger meds.. We agreed that I'd try to stick to 30 with one refill every three months. My doctor knows me well and we've talked about controlling my pain many times. His concerns are based on MY wishes and beliefs, I have always asked him to help me control pain without meds and he respects my wishes.

Anyway, if you can not take OTC pain meds, you should be able to get the prescription pain meds you need. Talk to your doc and make a plan. Discuss how you can get the relief you need.

One of the problems with pain meds is that they work better if you take them before your pain gets too bad. Since you can't tell in advance when you will be having a particularly bad time, how can you do this?

Good Luck
Posted 9/4/2008 5:40 AM (GMT 0)
I can totally understand the fears of having your doc think that you're drug seeking. Recently I went through this too, and it's something that all of us have gone through, time and time again. Even if you're prescribed at a certain level, if you reach a point where it's not enough and they need to change your dosage, or change what it is that they're giving you, we end up feeling like we're junkies trying to get something "better."

Discussing how it affects your daily living is one of the things that I think is a big help. When you are asking for help to be able to move better, and to better care for yourself by being able to stretch and walk etc, it seems to (at least with my doc) make him better understand that I'm not just looking to sit around and enjoy a buzz, that I'm looking to improve my quality of life and be more productive.

And for me rice bags and hot showers are two of my best friends. My third best friend are my furry heating pads (most people call them cats) that like to lay in the right places too. smilewinkgrin
Posted 9/8/2008 4:24 PM (GMT 0)
Thank you everyone for helping me feel better about pain management.  On one hand, I feel awful that other people have to deal with their muscles feeling like they are being ripped open, but on the other hand, I am a little less afraid that is happening to me too.

I feel especially relieved that severe "my-limb-is-being-amputated" pain is somewhat common, it's nice to know that the doctor won't ever think I'm making it up or exaggerating!  The rheumatologist I have is really super nice and I am so happy to know that I won't look like a whack job or a druggie when I go back and see him.

I'm sure if he doesn't want me to use tramadol he'll have me try something else to help with the pain, and hopefully I can cry less often.  Maybe I'll be able to always take something when the pain starts getting strong and never get to the point where I feel like someone's using a hacksaw on me, that would be so nice :-)

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