Chronic Pain

Hi Betty
Your husbands night shifts must amke it hard for you ! Things need to be so regular for me -same time to bed, same betime routine and no-body making noise in the house coming or going -so you're husbands shift would drive me crazy.. Do you have a dog? Maybe you should sneak the dog in bed with you when your husband is working. :-) That's what I do when mine is away. But now with the skin pain and hot flashes, I'm afraid it's not as helpful.

Yesterday my skin pain let up all of a sudden. Not the muscle pain, but the skin pain. So weird to come and go like that. It's back a little today, but not near as bad -just a slight irritation. Makes me think something must be setting it off.

My doctor is letting me try to go back on muscle relaxants -I've been off everything for a while until we got things settled down with my heart, so I'm hoping I my heart will not mind a small dose 3times/day. That should improve the quality of my sleep drastically!!

Atlantic Canada is made up of New Brunswick, Prince Edward Island , Nova Scotia and Newfoundland. I live in New Brunswick , which borders on the state of Maine. My United States geography is terrbile, so I'm not sure where it is compared to NY and I don't have an atlas nearby -but we are right on the Atlantic Ocean . If you travel out this way, I would love to have you drop in!! I think you mentioned where you are, but I forget. Are you farther west? You must be up in the northern states if you still have snow. It sounds like our weather may be similar. :-(

I'm hoping for another good night's sleep for you -and for me!!

Bev

Good Afternoon Bev

Awe, had to giggle a bit about the "do you have a dog thing" lol I have four dogs in our bed and some nights our king size bed is not big enough and I put two of them in a kennel in our bed room so I have room to move. lol
I do have a little special baby that I snuggle with all the time and she never leaves my side, lap or where ever I go. She's a 4# toy poodle named Honey and she sleeps/snuggles with her body in my armpit and her nose buried in my shoulder, she's so cuddles up that I can hear her every breath. I do have trouble sleeping with out her, but I only let all 4 sleep on the bed when my husband is working nights and we all snuggle up nicely. The only thing I can't stand when I'm in bed is to let one of the bigger dogs lean against my spine or Lumbar region, so I will shove them away if they try to snuggle up to my back. They are all very important for me, as I spend hours & hours at home alone with no company but them. So we are pretty attached to all of our furry family. Giggle!

I did go & get my atlas out and check where we are from one another. My husband is a real geography nut and we have maps covering our spare room walls. His family on his fathers side are all Catholic French Canadian and they came into the us from Quebec. I used to be very active in Geneology and really got involved in it.
If you went strait west from New Brunswick and clear over to the pacific ocean, you'd be near me. I think we're as far apart as we could be. lol Isn't the internet Grand? (Smile)

My skin pain lets up and sometimes I hardly notice it and other times it's like I cannot hardly handle wearing clothing and have to keep a lite moomoo type house dress on and even the elastic on my under pants hurts me. Weird!

I would love to see your area somday and I'll certainly keep the invitation open
If you make a strait line between us, we're about at the same level on the continent, you may be a bit higher, but really close.

It was another bad night, horrible night sweats, tossing, turning, throwing the blankets off, then freezing. My poor little pooch kept thinking I was getting up when I through the covers back, then I'd lay there and try to cool down. My husband got called in early to work the evening shift from 3 - midnight, so he left at about 9am and won't be home till midnight. So I won't even try to go to sleep till he comes home and hopefully I can sleep all night, but I never know.

I think the part of this chronic illness that drives me the most crazy, is the never knowing and the constant wonder of how I'm going to feel each day. I can go to sleep feeling pretty well and wake up feeling like a truck ran over me and I don't get how that happens. I was talking with another pain friend and told him that the morning pain, stiffness and just over all sick feeling, drives me nuts. I wish for once I could wake in the am and feel like today is going to be a better day, but I always have to wake up to extreme pain & fatigue and go through the first few hours of dreaded sickness, then some times I'm better after I give my meds a chance to work and I do some stretches or I never get out of that aweful feeling all day.

I really hope the muscle relaxers help you. My doctor does not want me taking any extra meds and wants to concentrate on my pain coming down and he feels that if we continue to focus on the pain, that other things will fall into place. I'm really bad about asking for more sleep meds, as I don't like the grogginess hang over feeling they give you, so I guess part of my sleep problems are my own fault too. The fatigue problems I've not addressed or asked for anything, as I don't like anything to make me jittery or even any of the daytime cold meds make me feel weird, so I don't like those types of meds, and I guess that would be my own fault too.

I probably should quit jabbering at you. you've got better things to do than listen to me. lol
It's just been really nice comunicating with you and I really enjoy it.

Gentle Hugs my friend and here's hoping for a good nights sleep
Betty

Hi Betty
We connect with the dogs also!! I have 3 -the smallest is 70 punds , my large shepherd is about 115#'s abd the shepherd pup is about 75 punds. We also have a king size bed and the 3 will sleep with me when my husband is away -but unfortunately, 2 of them now try to sneak in the bed when he is home -and it really is too crowded.

I really believe in cause and effect -something must set off the skin pain - where it comes and goes. For me it is less constant than the muscle pain and fatigue, but can be more annoying when it is intense. Mine still has not returned. I'm thankful, but I can't figure out what set it off-or what cured it. I had several people praying for me, so I certainly don't rule out healing from God -but what set it off where I hadn't had it for years?

The muscle relaxant I take is my only form of pain medication -except ibuprofen and tylenol for flare ups. I started on flexeril after Amitrptyline (Elavil) didn't work and caused a bad reaction in me.It had the pleasant side effect of really helping to manage my TMJ disorder and of course helped with sleep. But yes, terrbile morning fogginess. I think I took that about 9 years. My new TMJ doctor has switched me to the muscle relaxant baclofen. i found once it was in my system, it didn't make me as groggy. So it helps with the muscle pain, and the muscle spams in my jaw. It was putting down my pulse too low as it interacted with my heart medication, but I'm now off bet-blockers, so I'm starting back on baclofen at a very low dose. My doctor thinks going off the muscle relaxants caused my skin pain. I'm not so sure . In fact, I'm not sure she understands the difference of the skin pain and the muscle pain.

If you don't mind me asking, what kind of things do you take to help manage the pain? My doctor is pretty good about letting me try new things when I learn about them. We tried Lyrica about 3 weeks ago but that gave me extremely fast tacycardia and high blood pressure -after just one day. Both went away when it was out of my system 24 hours later.

Hope you slept last night. It really is so essential to our pain level and fatigue, isn't it?

Talk to you soon.

Bev

Good Morning Bev

I think you must be in the east coast time zone, so it's afternoon for you and around 10:30 am for me.

How fun, another dog lover (smile) Shepherds are beautiful. We only have small dogs now, we had large breeds for years, but even with our whole property fenced, the neighbors were always afraid of our dogs and they caused a few problems, so when those dogs died off, we replaced them with smaller breeds. I don't like to scare people & their children, maybe our neighbors are a bit sensitive about it, but it's not worth the hassle for us.
We now have a Pug, Yorkie, Poodle & Our very own designer dog a Pugoodle. He came from an accidental union with my sons male Pug and my toy poodle.

My skin wax's & wanes, sometimes I don't notice it much, then other times I'm not even comfortable sitting still, if I lived in a warmer climate, I'd probably shut all my blinds and wonder around the house naked at those severe times. We live way out in the boonies, down a dead end road, then down a private gravel road, so I really don't have to worry that much about anyone looking in the windows, except for one neighbor has to drive by our house to get to theirs.

I'm also constatly trying to figure out what set flares off, whether it be by my own fault or the climate. Some times I drive my self crazy doing it & especially when a flare comes when I'm not expecting it or have not broken my own rules to ward it off. lol

Well, the weather is cleared up today and atleast it's not activly raining, pouring, or snowing. So I'm actually feeling alright and think I may get a few things done today.
My husband got called into work early again today, so I'll be alone all day and all night to midnight tonight, I guess it's just the way things are. It would not normally bother me, but now that I'm nearly a shut in, it really gets on my nerves sometimes.

I hope your having a wonderful day, your pain & discomfort are low and your feeling well enough to enjoy the day.

Gentle Hugs my friend
Betty

Hi you two - I see you are doing well with posting subjects that involve fibro .. I get the creepy crawley burning sensations in my hips , but usually at night when I am laying in bed .. funny part is , it isn't the side I am laying on , it is the opposite side ..

So if I lay on my right side , my left hip begins almost immediately to burn and itch , drives me nuts .. and the same if i lay on my left, but not as bad ..

I don't know what to do about it , so I take an extra xanax to fall asleep .. cool helps , but would warm ? Adrian

Hi Adrian

Hmmm, that sounds a bit different from my pain. Fibro certainly is strange Heat makes my skin pain worse, but helps the muscle pain. Cool helps the skin pain.

So Adrain, do you have fibro and MS? Wow. How that's a lot - I have a friend with MS and she had mobility problems, but she was one to look on the birght side, so she said at least she didn't have the pain I had with fibro. You lucked out -but I see your sense of humour is a great tool in your pain management . Good for you.

How do you guys get to check all the different forums -then their are share posts. Yikes. How do you manage your correspondence , without missing if someone had a reply or question for you?

Talk to you later.
Bev

Hello again ladies

how nice of you to join us Ms Adrian.

hip skin burning on the oposite hip, hmmmmmm!
I get a numbness ache thing like that, it's a hard to explain type of pain, I know you know what I mean. Normally it's when I'm in a strange bed, like at a motel and sometimes happens if I fall asleep on the sofa, it's too hard and some how strains my oposite hip in various ways.
I have to put a pillow between my legs in our bed, but the memory foam mattress pad helps with the tingling burning pain. just weird. I can no longer sleep with out the pillow between my legs to hold my lower leg more level with my hip. It also happens when I sit in restaurants or waiting rooms. kind of depends on the chair I'm sitting in, but it really bothers me to sit in a booth with a bench type seat, where your knees are tilted up higher than your hips. Can hardly stand to sit in a booth. the itching, burning, numbness, tingling, etc......... will drive me buggie. It's a real bummer cuz my hubby likes the privacy of a booth. I normally have to sit on the outside and turn myself somewhat side ways in the isle or else I cannot stand it.

Bev; There are a couple of ways you can set up notifications. You can either click on each persons name, then a drip down list of choices comes down, go down to notify each time this person posts or something like that. The other way, go up to the very top of the page where there are boxes that say Go, New, Find,etc, put your curser on Go, a drop down box comes down, then go to Personal Zone and another drop down box and you then go down to notifications & your will have several choices to pick from and mine are set to send an email notification for each time someone makes a reply in the DG and you can set it to send you a email for daily, weekly & each response.
On the other side where the share posts are at, when your reply to someones question, comment or what ever, the site will automatically send you an emal to let you know someone replied to your comment, when you find someone you enjoy their shareposts, you can click on each person individually to subscribe to their shareposts and each time they create one, you can go read it. Mine is set too let me know when about 45 different members create a sharepost, so it's your own choice and you can do what ever fits you best. I have other sites on daily digest and if I see a topic I want to reply too, then I can just click on the individual one and just go to it to reply, but sometimes you miss questions that you may of wanted to respond to quicker. The weekly digest would be pretty much a read only thing and not really wanting to participate. But it's all a personal preference.
Hope this explains it good enough, if not I can go inot it further and you'll catch some new things all the time, as I keep learning all this stuff too.

Have a great evening
Betty

ps; When your replying and the little reply box comes up, right underneith on the left side, there is a small box with notifications and you can also click that box to turn them on or off too.

I also have another question.

Do either of you have trouble with supper dry skin and I also have the dry eye issues and have to use those ointment type of artificial tears ( the ones so thick you cannot see anything for about 45 min to an hour) before I can sleep and sometimes like today, I have to put them in in the early evening, as my eyes are driving me nuts today and I've put lotion on about 350 times today too. But I also have to becareful which type of lotion I use, as some times the lotion will drive me nuts, example Eucerin, but the old original Jergens lotion seems to work better than any of the new ones. Not the other scents, but the origianl Cherry-Almond that my mom & grandma used when I was a little girl?? weird, but I'm really glad they still make it.
I also have been sleeping in my manicure gloves that I put on a heavy udder balm called corona (used on cows, horses, or anything with an udder, lol) and I sleep with the gloves on and the heavy lanoline based gook and it helps the pain in my hands & skin. Really messy and you'd not want to put it on and allow it to get in your bedding.

I have to laugh, this has been a really great conversation for me, I've really gotten so used to all these weird things I do to try and live with all these symptoms and I forget how strange all these things are and how bad they drive me nuts and distract my mind cuz they are so bothersome.

Thanks
Betty

It is amazing to hear of other people with this same feeling. As far as I and my billions of dr.s can tell I dont have fibromyalgia but I have felt the same skin sensitivity! It only happens in my shoulder where my crhonic pain is the worst. I cant wear any clothing or even have my hair touching my shoulder. It burns all the time. I went to the ER a couple times and they would give me a shot of lydocane under my shoulder blade and perks and send me home without it feeling any better. I have no idea how to deal with it besides just lying in bed with no shirt on and my hair up. It is a terrible feeling that is so hard to describe to anyone who hasnt felt it!

Hello Moonunitestar1

It's really nice to meet you and Welcome to the Chronic Pain connection, we're glad you found us.

Have your doctors ever talked to you about nerve pain? Some of us have nerve pain or Neuropathy as part or all of our chronic pain and they do have some medications that sometimes help with the nerve sensitivity. I take one of them for mine and it works sometimes but sometimes it's seems nothing works.
I had chronic spinal pain for many years before I somehow acquired or was diagnosed with Fibro too. Thinking back, I did have symptoms of FM, but some of them came on gradually and I had bouts of fatigue, but they always were induced by over doing my activity & work schedule. But sometimes now, all it takes is a walk around the block or one night of insomnia and Mine flares up. It is just a crazy illness and I really hope you don't every have it.

It is really nice to talk to people who understand our pain, I've really found comfort and support here and I hope you can too.

I think that getting our families to understand our pain is pretty much a universal problem for everyone suffering with chronic pain & illness. I've learned alot from everyone here and they all seem to have a different idea on how to learn to live with & deal with a life of pain & illness.

I hope to see you around and your welcome to join in any of our discussion that interest you. Take Care and have a good weekend.

Hugs
Betty

Thanks for the warm welcome. I have had 2 neurologists that have wondered about neve pain and I did take nerve meds for a while but they made no difference. I have weakness in my long thorasic nerve but they said that it has gotten stronger and that was one of the reasons I had surgery on my shoulder. I have been to more doctors than I can count and have tried every possible solution from surgery to herbal remedies and alternative medicine. Nothing seems to make a difference and the pain is just spreading to more parts of my body. My chiropractor actually told me to watch the show Medical Mysteries in case there were any similar cases! haha

I am often fatigued which can cut into my social life, especially being a college student. It is hard enough trying to get work done with my pain and tiredness but then Im usually to out of it to even go out with my friends. I just feel like its completely unfair that I have had to deal with this since I was 17 and no doctor can figure it out.

I joined this because the only time I felt like someone understood what I was talking out was after my surgery. The woman I shared my hospital room with stayed up during the night with me telling me how she had a friend with chronic pain and it was so easy to forget that. Once she started having the same constant pain it made her realize that its a lonely battle and the only people who understand are in the same prediciment.

My mom keeps telling me to ask my dr's about FM but they all say that I dont have it, and I guess i need to accept that but its hard when there is no alternative answer. I think if someone could tell me how the FM affects their body it would make it easier to compare my symptoms and see if it is a possibility or if it is one more thing that i can cross off the list.

Hi Moonunitestar1

Good to talk to you. There's tons of info on line, but I can share my experience -sometimes that does make it more real, I agree. For it to be diagnosed as fibro it must be in both upper and lower body and on both sides for more than 6 months and you must have at least 11 (I think) of the trigger points active.

I think the common complaint is whole body aching that feels similar to having the flu. It can be worse on some days and some days can be minimal. For me any repeated movement creates pain that may last for days in the muscle I was using. So if I cut up vegetables for a stir fry, my forearm will be sore from the chopping. If I go for a walk , my shins and or feet may be sore. If I type at the computer more than 15 minutes, I can be sure to have sore neck, shoulders and arms. I cannot sit too long -I cannot stand very long -and I can't sleep in, because my body will hurt too much. I have to change my activites to use differnt muscles in order to cut down on the pain.

Fibro has a host of conditions associated with it, but may not really be a part of it, and certainly wouldn't determine if that's what you had. Overall muscle pain like being hit by a truck is the main symptom I think. Hopefully Karen Lee Richards will notice your post -she will have more information than I have for you.

I'm thinking your pain seems isloted to an area -and wonder if it's not nerve pain -which can be pretty terrible. Any type of chronic pain will make you tired I think. It wears you down.

Hope you can find what you need.

Welcome aboard!

Bev

Good Evening Moon & Bev

I see Bevs done a really nice job of telling you some more about FM. Here is a link to the National Fibromyalgia Association website and you can click on symptoms and go over it in your head. The site has just about everything a person would ever want to know abou Fibro & more. http://www.fmaware.org/site/PageServer?pagename=fibromyalgia Hope this helps.

I'm so sorry, your so young and I just cannot imagine having to deal with this type of pain at your age. Mine held off till 40 and then was turned on like a switch shortly after my 40th birthday. Just about every part of my life changed at 40.

Well, let us know how your doing and we will be here when ever you'd like to talk. I'm really glad you found us, it really helps to talk to other people who live with pain, they have really brought a great deal of joy & friendship into my life, that I thought I had lost.

Bev, hope you had a nice day, good to hear from you.

Talk to ya later, if you want more sites & info on pain, just let me know.
Gentle Hugs
Betty

Betty, you are soooo great with passing on good websites! Thanks!
Bev

Awe Bev

I've just been studing and hunting the web for all the current info and the most informative sites for several years now.

Here's another really great site http://fmnetnews.com/index.php These two sites are the best ones I have found. They both send newsletter/magazines out quarterly that are packed full of the most up to date info, studies and stories of real people like you & I learning to live with this horrible illness.

Last year I was only a member of one of them and this year have been blessed to join both. They also have an online newsletter you can sign up for, for Free! It's also worth it's weight in gold. I highly recomend the email magazine articles, but if your able to join them, they really have great additional info for their members too.

If your ever looking for some new sites or for partiular info, I have a very extensive list of resources to use and I'll share with anyone interested.

Thanks your too kind
Hugs
Betty