In incredible pain - what the ^%$@@!

For everything and anything else not covered in the other RLS sections.
ViewsAskew
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In incredible pain - what the ^%$@@!

Post by ViewsAskew »

Jannie, Becat, Penguin, Ruby, anyone who has pain, I need some help, fast! Either I've developed fibro in the last two days or I'm having a horrid med side effects or maybe I'm in an X Files episode and my body has been invaded by aliens.

My lower back, buttocks, hips and to some extent the back of my legs are in constant pain. Sort of like the way you feel when you have a terrible case of the flu or when you've fallen down a flight of stairs and it hurts to even breathe. It started last night about a 1/2 hour after I took a dose of Neurontin. This was also while I was eating my dinner at a restaurant. It hurt all night - when I did get some sleep it would hurt to lay there. Anytime I bend or stretch it is extremely painful.

Today it was still there, but got continually better throughout the day. By the early evening it was only a slight ache in my lower back. Last night I looked at side effects for Neurontin and found that muscle aches, specifically lower back, and feeling flu-like symptoms were side effects. So tonight I decided not to take it when I normally do. I took the methadone first instead. Shortly after eating my dinner, about a 1/2 hour or so after taking the methadone, the pain increased so it was like the night before.

I don't see how it can be the Neurontin since I didn't take it tonight! It has a short 1/2 life and should be completely out of my system. And it can't be the methadone since it started last night and I hadn't taken the methadone yet - in fact I hadn't taken any since Friday because of the itching episode I had with it.

So what the ????? Does this sound like pain anyone else has? Jannie, is this how you felt when you first were feeling badly before you were diagnosed with the fibro? I also have been terribly fatigued lately, but what else is new when you only sleep an hour or so at a time and get a total of a few hours each night :roll: ?

I am ready to cry. . .I have tried very hard to believe that this will all work out, but I don't feel very positive about it at the moment.

Thanks for listening
Ann

becat
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(((((((ann))))))

Post by becat »

Hi Ann,
Honey, I can't be sure about the medications your coming off of or trying, by that I mean the side effects....
but I can tell you about the pain.
My hips feel achey, like I need to be adjusted (chirapractor). The pain I noramlly have runs the length of my leg, sometimes into my foot. Now good days it's the right leg, bad both.
It's a deep ache, like a tooth ache in my bones.. ( thank you to the person that said that a few days ago). But the muscles are like I have tight and tired like I've climbed a mountain without using my arms. They do hurt, but at some point it's hard to seperate it all.
My guess is that it's the side effects, not something more. You know I'm not doctor, but it just makes sense. When I got off of Mirapex, I know it felt like I had the flu, but I was in the middle of a major miagraine (sp?) for 4-5 days. After it went away, I was just different and maybe more headaches. Maybe that is just the way it worked in me. I know that Neurontin is different, I never could take it.
Use a heating pad or get into the hottest bath you can stand. And if it is not better tomorrow YOU CALL THE DOC. If this pain is not normal than you may need to do something different.
I know your working hard on getting off all the medications and changing. I'm so sorry that it's this hard. Hang in there.

ViewsAskew
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Post by ViewsAskew »

Yeah, Steve was just lecturing me about calling the doc in the morning. Ok, Ok, you guys gangin' up on me or what? :wink: .

I probably is just side effects. I do remember you saying before that you felt like you had the flu when you stopped the Mirapex. Well, this is my 5th day without it. Maybe it's just a strange combination of all of the above - new meds, withdrawal, etc.

Thanks for the support, my dear. I knew I could count on you!

Ann

jan3213
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Oh, Ann

Post by jan3213 »

It's Jan

I gotta tell you Ann, coming off of Mirapex for me was worse than coming off of Effexor. I felt horrible. My fibro (if that's what I have--it's yet to be determined by my new neuro) pain was more gradual, Ann. Coming off of Mirapex, I didn't sleep for four nights. Well, actually, I probablay got a total of four or five hours in four nights. I finally got some sleep the fifth night. I also had RLS really badly. I opted not to call my doc because I was afraid he would give me something to help me through the withdrawal (and he did tell me I WOULD go through withdrawl, not that I MIGHT go through it). I hurt all over all of the time, so it's hard to distinguish the difference between what pain is from what. But, I agree with Becat and Steve, you should call your doctor! What you are experiencing is not normal! If you remember, my former neuro had me on an extremely high dose of Mirapex--5 mg. That's why I was so upset with him. I will be weaned down to 1.5 by tomorrow night. Good luck, Ann.

Jan
No one is alone who had friends.

ViewsAskew
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Post by ViewsAskew »

Thanks, Jan. FINE - I'll call the dang doctor! You guys better stop ganging up on me or I'll cry :cry: .

Interesting update - the pain had subsided to a great extent. But If I think about it, that makes sense. It started while eating at about 8:30 PM-- same time it started last night and also while eating. I happened to take the methadone 1/2 hour before it became quite painful, but methadone takes up to an hour to work. By 9:30 the pain was very minor - probably because the methadone was stopping it. I just took the the Neurontin, so I guess I'll see what happens next.

And I'll call the doctor in the morning (maybe).

Ann

cornelia

pain

Post by cornelia »

Ann, I don't know where your pain is coming from, because it is difficult to establish when you have been using different meds in a short time.

Maybe it is the Neurontin or leftovers from the Mirapex. I can only say that I suffer from pains like you mention every day as soon as I start Requip and Neurontin at 1800 and 2245. I had them to a certain extent with on Requip only, but as I added the Neurontin the pains became worse. My RLS is so bad that I said to myself I will cope with them.
A hot shower in the morning is so wonderful and after I have taken Tramadol the pains disappear. Flulike symptoms come and go with me. The DA's are the culprit with me, I had them right from the start. Also from time to time throat-aches.

Maybe this is of some help.

Corrie

ViewsAskew
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Post by ViewsAskew »

Corrie, how awful that you have this all the time :cry: . I cannot imagine feeling this way all the time. I am now thinking it is either the Neurtontin or maybe I did some damage to my back. About two weeks ago I fell down my stairs - my butt had a huge bruise. Nothing hurt like this at the time, but who knows? The Neurontin is my primary suspect, though. After I took the methadone tonight, the pain subsided. A few hours later I took the Neurontin; 45 minutes later I undressed to get ready for bed. When I bent my back while undressing the pain became very stong again. It has subsided some, but only if I don't move and I stay in a sitting position. Laying down makes it much worse, as does stretching or bending.

Corrie I am so sorry you have to go through this. Does the Neurontin help you much? Since the tramdol drops help, can you take them at night instead of the Neurontin?

Ann

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Post by Penguinrocks »

Ann,

Hi, didn't have a chance before now. What you have described is ME! On a daily basis. I'm not taking anything now but the Wellbutrin.
I've been eating OTC arthritis meds and it seems to alleviate a little. When i go to bed, lying on my right side is unreal and it's the only side i can get to sleep on.

I hope you are doing better hon!

Loves
Penguin
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ViewsAskew
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Post by ViewsAskew »

Man, Penguin, this blows! Has anyone had any idea of what it is?

It was so horrible last night when I laid down, I started to cry. But after a few hours of sitting, it was completely gone. I laid down again around 4 AM and put a heating pad under my back. It hurt, but not terribly. I fell asleep, woke an hour or so later with no back pain, put the pad between my legs and went back to sleep. I got up this morning with NO pain at all. Though I was a new person. Decided to go look at a space to move my studio to and rode my bike there. All well and good. I got there, walked around and slowly it was aching a bit. By the time I got back on the bike it was hell again. I am home and sitting hurts let alone moving.

What I don't get is how it comes and goes with no warning and varies from hardly anything to so extreme I am crying. Seems very stange to me.

My pharmacist said she didn't think it could be any of the drugs - either what I'm taking or what I've stopped. I see a doctor tomorrow. I thought about a chiropractor, but guess I'll see my PC first.

Ann

jan3213
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Ann, I don't know what you have, but

Post by jan3213 »

This is why I'm going through all of the tests I'm going through and waht I've been going through for the past 9 months. It's no contest, believe me. I'm not trying to "out do" you. I FEEL for you. It IS horrible. I hurt every waking minute. And, it's getting worse. It wears on you. It's different than any pain I have had with RLS. Maybe what you have IS FMS, Ann. Gosh, I'm no expert. That's why I suggested that you should go to the doctor. It hurts when I turn over in bed or when I just move, period. Add to that the creepy crawly feeling of RLS and you've just got tons of fun.

I'm sorry you are going through this, too, Ann. I really am. There are people all over the world in all kinds of pain--sometimes I am so ashamed for complaining or saying anything. But the kind people at the fibro website have told me that we should not compare our pain. Chronic pain is bad. I have cried and cried, like you said (you started to cry). I've tried heating pads, hot showers, hot compresses, I've taken so much Advil it would choke a horse, massasges--don't touch me--. What you describe is how mine started, Ann. I'm sorry. I'm really sorry.

Look up fibromyalgia and you will see the Pressure Points Test. Have someone, a close friend, perform that test on you. That will help you decide if you have it (I know--self diagnosis). But, have a doctor TELL you. I'm not telling you to dx yourself, but it will give you an idea, maybe. (You know your body, just like you knew you had RLS.) There's no real "test" for it other than the pressure points test, as far as I know. But, I didn't go to med school. And, I gotta wonder about my former neuro! (That's a joke! haha)

Good luck! Let us know what your doc says, okay? And, I'll do the same, if you're interested. My new neuro isn't sure if mine IS fibro. He's leaning toward a couple of other things.

In the meantime, I hope you can get a little relief. And, I hope I do, too! (You, too, Corrie!)

Jannie
No one is alone who had friends.

ViewsAskew
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Post by ViewsAskew »

Jan, I've felt so badly for you - it has to have been so hard for you. And that applies to anyone else that is not being heard by his or her doctors, is in chronic pain, etc. No matter what the disorder, pain is pain - some may have more or worse than pain than others, but that doesn't mean that a lesser amount isn't worthy of being treated.

You know, I have NO clue as to what this is, but it doesn't seem like FMS. Well, first of all it's only been 3 days, not 3 months, which is the first requirement for FMS. I'm just guessing, but I would think that many people with fibro can't point to the day that it started - that it was a gradual thing. This wasn't gradual - it just started up full strength! And it's not consistent pain - it varies greatly at any given point. And sometimes it doesn't hurt at all.

It's interesting that yours started this way, too, though, and that your new doc isn't convinced it is FMS. I'll be interested to see what he tells you.

I have had some other things happen lately that could be responsible. I've had plantar fasciitis for almost a year, I fell down my stairs 2 weeks ago, and I have had a bout of snapping hip in the last couple of weeks. I think the snapping hip (a condition I've had for 12 years but hadn't caused any pain for the last 4 or 5 years) was aggravated by the way I was walking. Between the fall down the stairs and the heel pain, I was walking differently. So, with all of this off physical stuff, I easily could have damaged something or something could be out of whack - a muscle in spasm, who knows!

The only other thing that is odd lately is that I've been having 'sleep attacks.' It's not like narcolepsy, but all of the sudden I just get very fatigues and lethargic. I can feel it through my whole body. Sometimes I have to lay down and then I'm OK. Maybe it's somehow related - then again my doc my give me that look when I tell him. . . :roll: .

Here's to better times for all of us 8)

Ann

Penguinrocks
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Post by Penguinrocks »

Yes, Ann. It does suck!
I had Doc do the pressure points test that Jan is talking about.

He pressed on the lower left lumbar region just above my left "cheek" and I almost went thru the wall!

He felt so bad. I have this constant cracking in my neck now and the pain that runs from my right temple down past my right shoulder blade is enough to make the Pope swear i think.

I cry a LOT. I cry myself to sleep a lot. So, with all the pressure points hit, and my blood tests showing an inflamation, and RA ruled out, we go with Fibro.

The other night Kathleen (my daughter) was lying with her head on my lap, and my leg wents NUTS! Threw her right off. I've tried to hide most of my "afflictions" from her, but this one i cannot. So, I cry over that, too.
Sure hope this hypnotherapy can help something.

Loves
Penguin
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becat
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(((((((((HUGS TO MY GIRLS)))))

Post by becat »

(((((HUGS TO MY GIRLS))))))
Man I've been so busy lately, today was my day off from going to downtown Dallas.....a Lovely three hour round trip. Anyway, today was errand catch day and trying to figure out this new *&%^$ diet my hubby needs to be on.....No Vitamin K.....yeah ok.....
Anyway I've got a few minutes before we go to my oldest son's baseball game.....

My Gosh girls, we are a bunch to behold aren't we. Ann, I'm more in line with Corrie that this is being brought on by the coming off the medications. I don't disagree with the getting it checked out though. You fell down the stairs? Good Gosh Girl I'd still be crying about that one. Be careful with our Ann.....we need her around here.
Penguin, Jan and I have cried on each others shoulders more than once. There are days between the pain and sleep deprivation that my, our, emotions get topped out. I'm getting close, but holding my own so far. That's another post. The things I've learned from Heart surgery.....lol
I wanted to tell you........about the hiding it, the RLS, from those you love. You don't really hide it. I didn't. They simply did not understand and gave it ohter names. I never knew how much I tried to hide what was happening to me on a daily basis. It was like my own little lie, that became a huge lie in the end.
I know Sara and I have spoken about being the tough gal, ready to take on everything, the even keel syndrome. I never understood how my family saw was I was doing or reacting to my own body. I finally had dto learn to explain things as best as possible to those I cared for. Some of my friends, my husband, my kids......other family. I did my best and let them ask questions or let them walk away with the facts. It hasn't always been helpful for them, but more than a few understand better now. It was very helpful to me, not to have to excuse my body, just myself. Make sense?
Only once have my close friends seen me unable to walk, it was horrible. The look on thier faces was so sad, scared, confused.......as I am the youngest in our regular group. They didn't ask questions then, but little by little they are learning with me.
Give yourself some credit girls.......RLS is not for teh wimpy and each one of us is facing head on and doing our best.
~~~~~~~~~~ tissues for the tears and :D :D for our good days, may they grow in number.
Hugs to you all.

Penguinrocks
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Post by Penguinrocks »

Hello my ladies.

I know I cannot hide this from anyone and if they can't respect what i'm going thru then I feel bad for those people.
I just feel badly that I cannot hide the tears and the pain.
Yes, I am supposed to be wonder woman. I am supposed to be the strong one.

I guess all that comes from trying to protect myself and Kathleen from my past with the X.

Kathleen is learning with me about this and she's so good at helping me. I am very lucky to have her! AND YOU ALL!

Loves
Penguin
Beware the Penguin

becat
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awwwwww

Post by becat »

You know Penguin,
I can understand that in the best way possible. I'm lucky to have never had to deal with some of what you have. God Bless Me......
You know there were more days than not, that I'd cry out of frustration, pain, heck you name it. I do understand and I know many of us do.
So tonight I will give to you what I have given a couple of my loved ones and always my children, several of my dearest friends as well..........
Tonight please know that the same moon that sit high above you also sit above me. When you look up at it, know, I mean KNOW IN YOUR HEART, that I am under the same moon. The light shining from it shines on both of us, making sure we are never alone. You are never alone.
I look at the moon every night and think of those I have close, those that are far away, and those I can no longer touch. Even when it is cloudy I know it's still there. I like to think it's like having faith even though you can't see it, you know it's true, it's there.
Have faith that I'm here and your not alone. I know it's not much, but it's all yours.
I'm proof that things can get better. Good gosh it was a long time coming, but it happens.
((((hugs))))

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