I have a finger problem, brb

I have Fibromyalgia, Systematic Sarcodosis, and OsteoArthritis. Somedays I go from the bed to the recliner, to potty, back to the chair, and later to bed! I'm not good for much of anything. It's better now that I have most of my meds, but when I didn't have them over the winter, I just kept getting worse and worse, until I was barely living. I had definite suicidal thoughts, and the only thing that got in the way was a very loving family. I couldn't survive without them.

I can now get around and fix simple basic meals and help with loading the dishwasher and a few other things, but I rarely do much more. I walk around to get some exercise, but not too much or I pay for it later! Shopping is almost impossible.

More later. And you?

Thanks Sherry for thinking to use this forum.  I think it just might work, and we can always start a buddy list of people so they can PM us or vice-versa.  Now I just hope we can get everyone involved.

You poor thing!  It is soooo annoying not to be able to do the things you once did and be so limited in what you can do.  I have had chronic pelvic pain for about 11 years (not including the endometriosis pain I had for 3 years before that, finally ending in a total hysterectomy when I was 35).  My pain is apparently caused by nerve damage from all the surgery I have had, forming of pelvic adhesions (I grow them like weeds) and one doctor thinks I have microscopic adhesions wrapped around nerve roots that no one can see to get to and laser off.  One of the last surgeries I had 2 years ago the surgeon finally decided to take out my appendix as he thought it was looking a little inflammed.  I was just flabbergasted to hear that when they did the exam of the appendix they found microscopic endometriosis on it - after all these years! 

To add insult to injury I tore the plantar tendon in my right foot in November last year and it still is causing me alot of pain.  Now my left foot is sore and unhappy as it has been relied upon so much.  So Friday I had a shock wave therapy done to my left foot (had it done to my right foot in May, but it didn't help).  The podiatrist also injected my right foot with cortisone while I was asleep.  I'm such a woos that she figured that was just about the only way she was going to get it into me.  If the cortisone does not work then I am scheduled to have surgery on the right foot August 13 to cut away some of the tendon.  So now the limited tasks I have been able to do have been lessened.  I'm supposed to stay of my feet completely until Monday morning, but I just had to hobble down to the computer to check out what is going on.  :)

I agree with you completely about having a supportive family.  My husband has been my rock and doesn't ever complain about having to do 90% of the housework, 100% of the laundry and usually the grocery shopping.  I have gotten really good at cooking frozen pizza and he never complains about getting that at least once a week, or that usually at least once a week it is every man to fend for themselves at supper time.

It is very difficult for me not to feel really guilty about all the things that I can't do, and I have a very poor habit of the minute I think I am having even a half-way good day, pulling out all the stops and of course, end up overdoing and being back in bed for a day or two.  Maybe I'll get this right sometime.

Hang in there, Sherry - I think this is a great opportunity for all of us to get through this chronic pain together! 

Do you really want to know?  LOL

I have a type of inflammatory arthritis.  I'm listed as seronative spondylarthropy, most likely ankylosing spondylitis.  It attacked my feet first and has since spread through my body.  I've got two huge knuckles on my right hand and almost no cartilage in my left foot.

Sherry, I can relate.  I lost my ability to walk for awhile there when I was having flares.  It was danged scary.  I thought for sure I'd be in a wheelchair by now.  Thanks to PT I learned how to keep my range of motion.  I'm still walking 10 years later.  No marathons or anything, but at least I can get around the house, take Sierra for her 10 minute walk, and so forth.

I keep the pain at bay with exercise, aleve, hot pepper lotion, and biofreeze. I've stuck with the exercises I learned in PT.  I found out I have pain with or without exercise, but I keep my range of motion if I exercise.  I'll take pain and movement anyday!

It is plenty frustrating!  Everything I do has to be weighed.  My hands might be too sore to type.  It might be a bad foot day and I can't do the things I set out to do.  It's really hard not to be angry at it all.

Sierra is my inspiration.  Some days I don't feel like getting out of bed.  She had her back leg amputated last year.  She's very mobile but she depends on me for certain things.  And, it makes me feel guilty.  I feel like if she can hobble on 3 legs with arthritis and still be happy to get up each day, I should at least try to follow her lead.

Awww, My Bunly friend, what's the matter today?? Please tell me?

Yes, Melody, I really want to know. I really think that focusing on someone else's feeling and pain, is pure therapy! And who of us that has something that causes chronic pain, doesn't need some emotional thereapy!?!?! Your "spondy" ailments sound related to a rhuemetoid arthritis, and VERY uncomfotable! You are right, I think, about exercise not really helping the pain, but does reduce the loss of mobility. That's something I hadn't thought about since I haven't been going to PT. I know I've lost a great deal since then. I should pull out my sheets and start doing them again. Good idea!

One of the things I have worked at so very much, is to keep my outer face as joyful as I can for other people. Sure, I complain and whine when they are silly enough to ask, but I then try to make sure they see the outlook I have on life, that things could ALWAYS be worse. At least today I was allowed to wake up! And you know, it might be a day full of pain, but it is a day that I was given, and I try so hard to find something good about every day! Especially the ones that feel the worst, you know? You really have to look for bright spots on those days!!

Joy, I'm sure I have adhesions from my hysterectomy. My stomach has never been right since. It has always stayed super sensitive to the touch! And, I've had Irritable Bowel Syndrome since then too. Good Lord, that is an awful condition! Go to the bathroom at least once for every meal, if you are lucky, not till 20 minutes after you are done, but the unlucky times it starts while you are still eating!! I know ewwwww!!! sorry :)  and then there's the meals that cause you to spend 3 to 4 visits in there. Some try to tell me to watch what I eat and it will be better. But so far, I haven't had a meal in YEARS that doesn't send me running. So I don't believe there IS anything that doesn't cause it!!! hahahaha

I don't have any insurance, and probably never will again until I'm old enough for Medicaid, unless the government comes up with something, so I'll probably never get the adhesions looked at, much less remedied.

Thanks for coming over, gals, do you know if anybody has actually started a group on Facebook? I know there is the general one "PBS Rocks" but I meant for those with chronic pain? I've been trying to play a little with the other group, but I seem to be slow at learning over there!!! hahahaha but it really is a great way to make new friends  :)

Sweetie, I have free long distance and free minutes on the weekend on my cell phone, if you need to talk, I'd be happy to call you and listen. If you don't have anybody else right now, please, PM me your phone # and I will call you!

Bunly you poor dear.  This is what a forum for chronic pain is for.  We want to know what your troubles are and want to try to help in any way we can.  I do hope you took Sherry up on her offer and gave her a call.  She really means it when she says she wants to talk with you!

Sherry, yes I have bowel problems as well, I think I have progressed to having chronic pelvic pain syndrome and diarrhea is one of the symptoms.  I'll have days when I'm fine, then all of a sudden I'm in the bathroom 3-4 times in one day.  Imodium makes a big difference, but I have to be a little careful with that because I don't want to end up constipating myself!  Have you tried Imodium?  On occasion I'll take a dose when I am going out to try to prevent any problems and it seems to work.  I do hope Bunly called you, she sure sounded desperate! 

Thanks again for this suggestion, and I'm trying to keep reminding people what we are doing, maybe I'll PM a few of them.  Keep bumping the topic up so we can get the most exposure.  I have found that usually the only way I can do any shopping is to use those little electric carts they provide at the grocery stores and places like Wal-Mart and target.  So far I haven't received any speeding tickets and have not, to this point - knock on wood, run over anybody or knocked down any huge displays!

Hope your tomorrow is better than today.

Herniated disc and degenerative disc disease.  I know about about the sudcial thoughts.  The only thing that kept me from doing it was the fact that the garage has sooooo much crap in it I couldn't fit my car in there and wasn't in any shape to move the crap out of it.

I was scared to have anything done and I know that surgery doesn't work for a lot of people and some are worse off but I've reached the point of beliving it hurts so freaking bad now that I cry, wake up crying not even aware I'm awake and I'm crying, that trying anything is better than putting up w/this.  If all options don't work then maybe I'll at least get drugs.  PCP office was treating me like a junkie until the MRI came back. 

Doctors are so afraid of being sued or getting suspended you can't get the meds you need to make your life tolerable.  I got a 5 day supply of pain meds. Makes complete sense when the epidural is SEVEN days away now doesn't it?

I hope for us all that with all the medical advancements that are being made we'll all have our situations managed so we can lead a normal life.

Glad to see everyone here!!  I also have chronic pain problems.  I would be interested to hear of things you have found that help, whether it's meds or something else. 

Hi everyone!  I had a busy weekend, so its taken me a while to wander over here.  I think this is a great idea!!  I need people in my life who get what it is to live all day, every day, in pain.  No one I know IRL gets it.  They may sympathize, but they just don't understand.  They will when they get old - then we'll see who the weak one is : )

Here's the story, you asked for it.  Feel free to scan, it is lengthy : )

I am 27.  I have had chronic pain since childhood.  I was diagnosed with juvenile rheumatoid arthritis when I was 11, although to this day I am not convinced that was a correct diagnosis.  I also had rheumatic fever at that age, and the effects of that have never completely left me.

When I was 14, I started have chronic low back pain that would make my legs numb and caused pain from my sac joint and nerve ( I know that NOW).  Because of my age, it went completely untreated until I was 18, in college, and relying on heavy pain medications.  MRI showed degenerative disc disease.  I have tried therapy, chiro, massage, biofeedback, water therapy, cortisone, you name it.  It improved somewhat for a while, as I eventually became accustomed to the pain and learned my limits - don't sit, don't stand, don't lift anything, don't lose sleep even if you have to be drugged - lol!  Now, though, my back is getting worse, quickly, and I have a feeling it is time to reevaluate.  There are many more surgery options available now than 10 years ago.

After my son was born, I noticed a return of many joint pain symptoms that were familiar from my childhood.  It wasn't too bad at first, I was hormonal and sleep deprived, so I brushed it off.  By last fall, I was so depressed at the thought of winter and the pain it would bring, that I finally broke down and went my family doc.  I was exhausted to the point of sleeping excessively and in so much pain that I could barely walk.  I hobbled instead of walked, I couldn't type or open a gallon of milk.  My muscles were sore even to a very gentle touch, and ached if I actually used them for anything.  Luckily, because of my history, my family doc immediately referred me to a rheumatologist and I eventually was diagnosed with systemic lupus.  This also helps explain loss of strength and dexterity, poor circulation, being a magnet for illness, and the issues I have with memory, thought processing and expression.  Started on high doses of anti-inflammatory and anti-malarials, and they help - but I still have a lot of bad days, and winter is on its way back : (  But I am so much better than I was - now I function somewhat normally, but a year ago I couldn't function at all.  If I went and got groceries, I was down for a day.  If I had one busy, active day, it took a week or two to recover.  Now, I still have to be very careful not to get worn out, but I can go shopping, work part-time, play with my son.

Fibromyalgia often accompanies lupus, and I suspect that this may be true in my case - am going to bring it up to the doc when I go back.  I have 3 generations of women ahead of me that have suffered with it, and if this condition is possibly contributing to my pain, I want to know so we can address it.  NOW, not when I am 40.

Then there are the kidneys.  I have been monitored since childhood for a hereditary kidney disease (my dad and grandpa died from it) and when i was pregnant, started having kidney problems.  This disease has been scary and inconvenient, but not painful until recently - now I am having kidney pain in my back - see the kidney docs next week, I bet that means a whole new round of tests.

To top it off, I have chronic headaches - they are better since starting the lupus meds, but I still get them on bad sinus/allergy days and suffer migraines (especially around my period).  I have given up on fixing the headaches, I get them for too many reasons, I just don't think it is possible anymore to control them all.  But at least it is not every day anymore, and I am thankful for that.

<End of book>

I have found that heat and gentle massage help me - if not with direct pain, then with relaxing.  I used to use tanning beds in the winter, because the warmth really helped my back - just had to lay on a towel to pad it.  I use pain meds - right now mostly tramadol - I think it works well for when I need something to take the edge of the pain but still allow me to function.  It doesn't really help my pain a lot, but it is enough to get me through on days I have to be able to move.  I try not to use the narcotics too much, but I think I am going to have to break down and ask for something stronger than the tramadol.  Some days I just need it.  My fam doc seems to think I am a drug addict - I don't think he gets it that I am not looking for a high, I am looking for some relief.

Those of you with fibromyalsia, how are your sleep issues treated?  I can't tolerate amitryptelene, but I need a sleep aid.  Doc has me using triazolam right now, but only for occasional use and as a method of setting a sleep pattern, and I just can't stay on a pattern.  I can't sleep, or I don't sleep well.  I think I need a regular medication to help regulate sleeping, but don't want to be drugged out in the AM or addicted.  Anything that works well for you?

I just started looking at a book I got - The Chronic Pain Management Sourcebook.  Anyone else had this book?  Any good?  I will let you all know what I think as I get more in to it.  I know one other person on the other thread said they had lupus - The Lupus Book is a good resource.

Denise, I hope you are feeling better.  I feel so bad that you were having such a bad day.  Please let us know that you are ok.

Joy, I never can make myself use the motorized carts.  I should, but I always feel like people are going to think I am just trying to goof around, because I am young and there is nothing obvious wrong with me.  I suppose I should just do it, but then again - what if I take one, which makes me more comfortable, and then someone else who needs one to be able to shop at all doesn't have one?  I would feel bad.  I can do it without, so I guess I will as long as I can.

Sherry, insurance is unbelievable.  Luckily, once I get a job I will be able to get benefits.  One of the perks of teaching is the benefits, and now my medical card even counts as prior coverage so I shouldn't have any riders (whew).  But it wasn't long ago that I didn't have any coverage, and that is terrifying.  I sure wish something could be done about the way our medical and insurance industries operate.  I can't even get life insurance until I can get it through work.  I tried to pick up the policy my mom had on me as a kid, and they turned me down because of the kidneys.  That was before all the other crap.

Melody, what the heck is hot pepper lotion and where can I get some???  Sounds like heaven...

Geez, what a long post.  May be I should have split it up, lol!  Now my hands are all crampy, I think it is time to quit!!

Hope you all have a restful night and wake up feeling good : )

Lindsey, I would recommend to your doctor that if you aren't doing it already, to take the tramadol on a regular basis.  I take mine two tablets three times a day.  Then I use a mild narcotic on top of that if I need to.  If your doctor thinks you are a drug addict, either find a new doctor or stomp on yours' foot real hard and see how he/she feels!  :)

Have you ever been to a pain clinic?  I went to one several years ago and it helped me to at least get on a pain regimen that helps.  Once you get your insurance you might want to ask for a referral.

Please don't apologize for such a long entry!  We want to hear what is troubling you and I think it is helpful just to get it out of your system once in awhile. 

I had the same guilty feeling when I started using the motorized carts, but they make such a huge difference that I have decided that I know I need them and I geuss I could make a sign and drape it around my neck telling everybody why.  :)  But I do have to tell you, that if there is only one cart there I usually don't use it - I'm afraid someone will come along who needs it more than I do.  But if there is more than one, off I go!  Also, I am 51 so that makes me pretty much older than dirt, or so I have been told!  :)

Do you have a handicapped sign for your car?  That is a real help - if you are going to make yourself walk through the store at least you won't have to walk through the entire parking lot getting into and out of it.  You should be able to just ask your doctor and he will send in a request to the state for you.

Another thing that bothers me is having to get on the doctor merry-go-round on occasion.  One doctor sends you to another, then that one sends you to someone else, etc.  If I sent a Christmas card to every doctor I have seen over the years I would be broke!  As you can tell, although I don't do it real well sometimes, trying to keep a sense of humor helps.  Not always possible, that's for sure, but I try to keep it up the best I can.

Please feel free to use this forum as you need to - we're really glad you have come over, and if you want to PM me or anyone else on here, please feel free to do so.  Just helping to get this set up and responding to others with chronic pain issues has been a real boost to me emotionally.  I geuss it is because I feel so limited in what things I can do, at least I know I can do this.

Hang in there - let us know how your kidney situation comes out!

Blessings

Jill, is there anyway you can change to a new doctor?  As I told Lindsey the worst thing is having your doctor make you feel like a drug addict.  There are new federal regulations about medical personnel making sure that patients in pain are treated adequately, so you might just want to remind your doctor of that - he may stand a better chance of getting sued from not treating you adequately than he ever would by not doing it.  Thankfully my PCP is very understanding and willing to work with me with pain medications.  My gynecologist tells me that at this point, the only thing I can do is to keep taking "those little pink pills".  Have you asked for a referral to a pain clinic?  That is the place that first got me started on an adequate pain regimen.

Good luck with your injection - I hope it helps!

Blessings

Joy, luckily it is only my family physician who acts this way.  My rheumatologist is great, I may ask him about using the tramadol regularly and having something stronger on hand for *really* bad days.  Perhaps he intended for me to take it regularly and I misunderstood, having always used it as needed in the past - if that's the case, I need a freaking refill!  I have been stretching my supply because I am not scheduled to go back until November, but I think I will have to make an appointment soon to talk about some of this stuff.

I haven't tried a pain clinic, but that is another thing I want to discuss with him - I just don't feel like I have seen enough of an improvement in my day-to-day pain, and he won't put me on more anti-inflammatory because of my kidneys - I already take a high dose.  That leaves steroids as the next option, and I think I would like to look into other methods of pain relief first if possible.

Haha!  I have so many doctors they have a seperate folder in my address book in my phone!!  I give them nicknames so DH knows which one I am talking about.  I finally wrote down all my meds, doses, diagnosis, and doctors and numbers for my hubby to keep handy just in case - there is no way he would be able to remember it all!

I always hated the merry go round, too.  My family doc when I was younger was excellent - but I would get frustrated because every time I saw her, it seemed she just sent me to someone else.  But then I realized that it was better to have a doc that admits that they don't know what is going on or how to treat you than to have one who insists they do know, when they don't, and keeps you from getting the help you need.  So, I suppose it is just a price we pay to have specialized care.

Denise, I am sorry it is another bad day.   I hope that you can get some rest and that tomorrow is better - there's always that hope at least.  I don't have much trouble with the humidity, but the cold gets me and I can't hardly take the air conditioning, either.  But 100 degrees is no fun!  I think I will just live the rest of the summer in the pool...oh, yeah, can't be in the sun...hmmm... 

Well, we're just screwed I guess.  May be I will live in the bathtub instead??  Works for the dogs : )

Hi!  I finally made it over here.  i don't have time to post b/c dh just got home from work, but  I WILL BE BACK (in my best terminator voice)!

Thinking of you all!!!!

I don't know who posted about the torn plantar but I would seriously not recommend surgery.  I had a partial tear of my plantar had the surgery and it  totally screwed up my body.  I found a wonderful Myofacial Release massage therapist who has been a godsend.  I had the cortisone shots, I was in a boot for over 6 months nothing helped but the MFR therapist got me to the point where I can walk anywhere pain free...I was overseas for 3 weeks and when I came back I had minor problems from walking everywhere while I was away but 1 treatment and I felt like a dream.  I highly recommend it..I would try it first before you let them operate.   Pfrimmer therapy (type of massage) is also very helpful for fibromyalga.

As for sleep aids...essential oils are very effective to aid in sleep.  A combination of Vetiver and Orange with High Aldehyde are a fabulous combination. 

If you didn't figure it out I'm not big on medication and turned to alternative therapies.  I began out of necessity I am highly allergic to sulfites (they send me into anaphylactic shock) so I can't take most meds.  I have found that massage, oils, and herbs are just as helpful if not more so than actual medication.  There is also a wonderful book out there call You Can Heal Your Life by Louise Hay.  Its amazingly insightful but you have to be willing to take a hard honest look at yourself which isn't always easy. 

Don't get me wrong traditional therapies have their place...they just didn't work for me.  If anyone is looking for alternative routes I would be happy to talk to you.  Just for background...I have been in 20 car accidents(I was only the driver in 3 and they were the mild ones), tore my rotator cuff, tore my plantar facia, have IBS, have broken all of my fingers, my arm, misc toes, ribs, screwed up my knees, had chronic PID when I was younger which caused scarring and more....in other words I am no stranger to pain.  But due to my allergy I had to find alternatives to convential medicine.  I'd be happy to talk to you anyone about alternative therapies...maybe they are for you, maybe there aren't.  I just thought I would put it out there. 

I am stopping in too.  It's no fun, is it? 

Joy, I know there are regulations about treating pain, but my PCP has never evaluated my pain, not once.  Yet she didn't approve when I finally found a pain doctor and she's made comments about his treatment.  There's not much choice among doctors in this area.  I realize my issues are hard to understand because they don't show up right away or all the time but they are documented and I am on disability.  I was once on a forum with a lot of other people with my problem and it wasn't all that unusual for people to be on 80 mg. of Oxycontin.  Believe me, I don't come close to anything like that so when she made a remark last time about that being a lot of _______, I just said not for my problem. 

The worst part is that nobody believes it because I have what is known as an "invisible disability."  AND I may have a delayed pain reaction so I can do something that even I don't realize is going to kill me later or may even mess me up (worse than usual) for a week or more. 

What hurts?  Easier to say what doesn't, lol.

Diana, that is terrible about your doc, I am glad you go to someone else to help you control pain.  I would like to find a doctor who has actually had pain for a prolonged period and knows how it feels.  Do any of you find women are better about treating pain than men doctors?  This has been true in my experience.

Tonight is a not so good night for me.  I sat at the desktop all afternoon working on an online job application, and my desk is not set up right for me to sit there very long - the chair is too low, and it doesn't have a good back support, so now my back and neck are killing me from sitting awkwardly and slouching and leaning forward to see, and I have a monster headache.  I am relaxed with the laptop now, but the screen is still bothering my eyes, so I will probably go to bed soon.

The worst part is, I filled out the whole app, took a lot of time on it, and then realized that they wanted a high school cert for a junior high position.  Grr.  Sending it in anyway, I am highly qualified so who knows?

Hope you all are having a good night : )

Diana;  I sure understand the doctor problem.  It is bad enough to be in pain all the time without having to deal with people who think it is "all in your head"  and you should "just get hold of yourself and get over this."  Urgggghhhh.......  I am glad you are on disability - I am having a bear of a time getting benefits.  I've been turned down twice and now we're waiting for a court date before a judge to decide.  Chronic pelvic pain is not a diagnosis people know alot about, it is hard to quantify and on top of that, it's "one of those woman things."  I am hopeful that I will get benefits soon, because there is no way I can work at this point.

Heidi - the person with the plantar tear was me.  Unfortunately I am a former nurse, so I lean more toward the traditional therapies than alternative, but what you have shared really is interesting and I may look into it.  I'm scheduled to have surgery on my right foot August 13 after doing the anti-inflammatories, rest, ice, elevation, stretching, custom made orthotics, physical therapy, shock wave therapy, and last week while I had shock wave therapy to my other foot my doctor injected the right one with cortisone.  My left foot is beginning to feel better, but the right is feeling worse, so I don't have much hope that the cortisone is going to do anything.  The one thing about my doctor is that she does a minimally invasive type of surgery that many around here are not doing, she is really on the cutting edge of treatment, so I feel good about that.  I agree with you though that there are as many ways to treat someone's pain as there are people in pain and I'm really glad that you have found a way to relief! 

Denise, I am so glad you talked with Sherry last night, I was thinking about you often and hoped you would do that.  Emotions are just like a viscious (I don't think I spelled that right) circle, because you are in pain you get emotional easier, then when you are emotional the pain gets worse, and on,  and on.  But we are all here for you, so if venting to one of us helps lessen the stress and emotion, go for it!! 

Angie, I got your PM this afternoon, I'm glad to see you on this site.  I'm so excited about this (if you couldn't all tell)!  It is such a help  to be able to listen to someone else,  offer them encouragement and advice, and also to feel that I have a place that I can vent if I need to.  My husband is such a rock and support, but I just hate to keep whining to him all the time.  I'm sure there must be times when he just wants to jump out the window.  Thankfully we live in a ranch so he wouldn't damage himself too badly.  :)

Have a good evening everybody - I hope you all sleep well and that tomorrow is a better day!

Blessings;

Joy

Hey, everybody! Sorry I jumped in and then didn't come back! I had some other things to get done, and still have a lttle left to do, but right now, is time for me to unwind :)

Denise, I'm so glad to see you in here, I was sure you would be hurting badly the next day! Oh what stress can do! AND I'm so glad you are taking my advice. I think those kids of your's need to shape up, or stay out, and there's just no way you can look at it any different when your health depends on it :)

Joy, I'm so glad to see you picking up in here so well. It does help your spirits to have a purpose sometimes, and just reading each others posts and commenting where we can, and knowing that when we type here, it's only going to be people in similar situations that are going to read them. No worries about someone commenting that you "shared too much" (had that happen to me, here, no less) or telling you to stop your whining, since we are all going to be here for the purpose of whining, and everybody else can just stay out! hahahaha Should have named this topic Warning: Whining to be Done in Abundance: no critics allowed!

Oh! Who asked about sleep! Somedays I want to know what it is, other days I know what it is... my worst enemy! Can't sleep in the recliner right now, can't sleep in the bed with the big pillow, can't sleep without it. My lower back is out, and I have a spot of Spinabifida (spine not fully closed) and when I'm out, the nerves slip in there and get pinceed! Takes me an hour to get the pain out! And I wake up like I haven't slept at all, but that's not all the lower back. We assume the bed is not right for me anymore (waterbed) but I can't sleep on a regular mattress either, and Good Lord knows, I can't afford to even think about a sleep number or temperpedic!!! I've loved my waterbed for so many years, but this last year it just has been so hard to sleep anywhere, I just don't know what to do.

Of course, that's assuming I even want to go to sleep!! Didn't go to bed last night until just before 6 am and it's not unusual at all for me to not go to bed until 4-7 am  It really was nice when I was able to get sleeping pills. The DR wouldn't let me take them all the time, but I could have them 5 nights a week. Now, with the Lunesta and the other new non-addicting one, I could probably take them all the time, but of course, I can't afford them so that's not an option :(  I may try an off the shelf variety and see if they do anything. I can't take Tylenol, or I'd try the Tylenol PM. I have a friend that uses it just for the sleeping aid.

I really feel for those of you with unsympathetic, uncaring DRs. I am soooo very fortunate to have had good DRs for so many years. Matter of fact, all my adult life. Well, that's if you don't count the jerk that did my hysterectomy and the retired old gynecologist acting as a GP for the local clinic here! But, my regular DRs & the specialists I've had over the last several years since all this came about, have all been super great! They've never acted as tho it was in my head, always believed my pain was real and there is an answer somewhere. Never hesitated to give me any med that I asked for, altho, I've only been on any narcotics with surgeries, so they don't have much to worry about yet. YET! :)

DH went to the local pain clinic a few years ago. The DR that he worked with was soooo wonderful! It was awesome. He would adjust meds and make suggestions and you always felt like you were a special patient to him. Unfortunately, he moved away. We thought about following him! hahahaha He was that good! I think DH might be a whole lot better today, if the other DRs in the clinic had not dismissed him out of hand right after the good DR left. Problem Marcus has, and the reason it was so hard for him to get disability, is part of his problem is Fibro, and all those with it, know that is a woman's disease!!! hahhaaha

The first DR that it was mentioned to, dismissed it with that very statement, and the Adjucating lawyer for his disability hearing said it too. But, there are more men being diagnosed with it than there used to be, so he doesn't feel quite so ostrecized anymore hahaha  Water physical thereapy was the greatest thing he ever had! Oh, it made such a difference!!!

DH also had his heart's mytral valve replaced in 2001 which was so bad by the time they replaced it, it had damaged his heart from having to pump so much extra and his lungs from the backwashing of the blood, as the valve was not closing and with every beat, the half the blood that went into the lungs, would be pushed back into the lungs. They drained 2 liters of fluid off just his right lung the first time, and about 1 the second major drain. They finally left tubes in for several days. He had a hard time getting his disability, but it finally came thru! So, at least we have Medicare coverage for him.

Diane, I don't know what I'll do when I can't tolerate the pain left over from the steroids & pain meds I"m currently on. I can't take Oxycotin!! Makes me throw up! hahahaha I tried it twice, and both times had to sit very still until it wore off, because if I got up to do anything, I had to have a bucket close! Moving caused me to throw up the whole night, both times!

Well, glad to see you all here, and it was good to read everybody's intros. Be sure to feel free to vent or cry or whine or whatever you want to in here. I think as long as we have the ability to use this forum for this purpose we will be just fine. I would think by now, R&R would have made a comment if they didn't care for it, and while they haven't said they won't give us a Chronic Pain forum, I think that if this is a well used forum, quantity not just quality, I mean, then it will show them that it will be of value to their members. But just asking for one, without proving that enough of us really will utilize it, just doesn't sound like it will fly.

The crafters got their way by quietly making their topics and constantly using them. The LGBTQ, the Cooking forum, and the Current Affairs & Politics all came to be used for different purposes just this way. And I think it's really a great way to be here but not in anybody's face with it, ya know? I hope more of the others will eventually see that they probably won't get their topic by just sending in feedback. This kind of action speaks soooo much louder than those words will ever.

Blessings to each of you, and may tonight be restful, and tomorrow enjoyable for us all.

Joy,

Good luck with the disability.  Mine was hell going through for various reasons but I've heard worse stories (minus what amounted to a nervous breakdown over the whole mess...).  I don't know what I'll do if they want a review this year.  It would be the frosting on the cake, so to speak, since it's like everything that's could possibly go wrong has gone wrong. 

Back when I got a diagnosis after a 3-yr search (and being kept working at a job that injured me more), the diagnosing doctor advised me to stop work.  My PCP's response was, "Now we have to find a job you can do."  Oh, yes...it would have been such a good plan to give up a job with full benefits and look for a job that didn't require me to use my arms.  Did I mention I have no education, well just H.S.  Honestly, that woman may not prescribe drugs but sometimes I wonder if she's on them.

Lindsey,

Please be careful about working with your desk not set up right.  My doctor feels that a good part of my problems are from working in poor ergonomic conditions. 

Also be cautious about places that bill themselves as pain clinics and be certain that they fit your needs.  There are many that do only shots and they run you through a series of those and you are out the door.  They have nothing else to offer.  If you are seeking real pain medication, you need to be aware of the term "drug seeker." <sigh>  I've never entirely understood if states differ or what, but when I was on another forum, some folks wouldn't have a diagnosis and would have little problem getting meds.  Here they simply don't prescribe anything unless maybe you are dying of cancer...? 

As far as the female docs, I don't know.  My pain doc is a man and he's decent, although I think he's tired.  My PCP is a woman and I sure wish she could live in my body for a few months. 

Oh, I know about the whining, lol.  It's like every day.  "I hurt."  Or sometimes it's these stupid constant headaches that just don't stop or even subside - some days I try everything...you name it. 

I hope everyone has a "good" day.

Unfortunately, Denise, there is nothing you can do for these people now. As I said Sunday, your ex-husband's influence is there and as they are all grown, there is nothing you can do any longer to change them. They have to change themselves at this point. Some families are just this way, and the poor matriarch can do nothing but agonize over it!

I guess I'll tell you a bit of my family history, to make your's seem less evil. Two of my uncles got into an argument at a family gathering once. Uncle #1 pulled a knife. So, uncle #2 went in the house and brought out a gun! Uncle #1 left and they never spoke again. Uncle #1 has since passed away.

Early family gathering, back when my Mother first became part of the family. Mother commented to Grandmother "You know, if you didn't have enough suger for this pumpkin pie, I could have brought some over." Aunt jumps up and exclaims "WELL! If you don't like my pie, you don't have to eat it!" Poor mother, obviously thought Grandmother had made the pie. Aunt hated my Mother until her death, and still hates me.

My sisters (twins) were fighting on day. Twin #1 is swinging the sweeper hose lasso style at the other (you know, the old heavy clothe covered tubes that ran from the caniser to the wand? with the heavy metal coupling on the end! Yeah, give you a headache for a week) Twin #2 picks up a large screw driver, hurls it at the first, and creases her temple, narrowly missing putting her eye out.

Twins again. One is changing the TV from the channel 2 wants to watch. 1 changes it back, 2 changes it away, back and forth until, 1 picks up a very large pair of channel locks (huge pliers) and cracks 2 in the head, requiring several stitches!

Our father (actually my step-father, but been my father since I was 2) was in a coma last August. I am his power-of-attorney and health care power-of-attorney, by his request prior to becoming ill, after our mother's death. I am the oldest, and most reliable child in the area. Younger brother, next oldest, would be good, but is no longer in the area. So, anyway,

Extended family has a bad thing about flocking to the hospital when people are there. They don't visit each other during normal times, often only see each other at funerals (not & weddings, they don't very often go to those) anyway, they were constantly standing around in Father's room chit-chatting, instead of going to the family waiting room. I am never ending vigilant in father's room. Finally, I have the nurse inform the family that, since they are all hard of hearing, and continue to talk in the room (intensive care, no less) they must limit themselves to 2-3 people at a time in the room. Uncle comes to tell me I need to go home and get some sleep that this is rediculous for me to be this way. That it is not fair that they can't talk in the room because of me, and it's all because I'm grouchy. I tell him, I'm not going anywhere, and if he has a problem, take it up with the nurse. It is not good for father to hear them and all the mouths at this time.

So, they call one of the twins to come "get me out of the room" She walks in a tells me I'm "relieved!" I asked and who says so? She says brother in KS call to tell her to come relieve me. I told her to go call him back and tell him I'm just fine, and if she wants to visit father (which she had only once up to that point, 2 days into the coma) she was welcome to, but I wasn't going anywhere.

She stomps out of the room, but on the way, informs me that she's getting a lawyer, I'm not his daughter anyway, and have no right to be making any decisions about his care, and have no right to be in that room at all! Haven't spoken to her since, and don't think I ever will. She is a horrible backstabbing person, and used to treat our mother horrible. She & her twin have stole and cheated our parents out of so much in the past, and constantly treat everybody like dirt, and then want to make up, when they need something! Yeah, loving families do not always happen.

I was blessed for having to suffer with such a horrid family, tho. God gave me a husband with a family full of the most wonderful people!!! My in-laws are the best in the world! I've never had them be hateful or ugly to anyone, much less one of their own. I have told them on so many occasions when sharing times were held, how much it has meant to me to be a part of the family. Some of them can hardly conceive a family like mine, they've always had a wonderful family. We have extended family gathering with up to 200 people at a church camp! DH's own family is nearing 70? so just our family gathering now takes a hall somewhere! hahaha

Two totally different families, it's soooo amazing! It's not hard for me to understand how caring and compasionate my DH is once you know his family. It's so hard for him to understand how awful my own family is coming from one as wonderful as his! hahaha

So, Denise, sometimes, there is nothing you can do, once they are as grown as your's are (notice I didn't say "grown up as your's") They are all adults, and you can no longer control them or what they do, or how they behave. They can either grow up, or stay the way they are. You are going to suffer, no matter whether you remain in the middle of their arguements, or force them to keep the nasty at bay, but you can at least take the road that will cause the least stress, and that is making them keep their fighting off your porch! I wish it were different, but it isn't. One more reason to hate your ex! hahahaha sorry, just had to :)

{{{HUGS}}} My friend!

Hi guys!

Sherry if you are looking for something to help you sleep, buy a bottle of generic Benadryl.  (Diphenhydramine). If you check closely, almost all the over the counter sleep aids contain this medication.  Tylenol PM, Motrin PM, Sominex, etc. etc.  So just buy the original med and you don't have to worry about it being combined with Tylenol, Motrin or anything else.  Take 1-2 tablets about 30 minutes before you want to go to bed.  (This is assuming that the tablets are 25 mg each).  It's worth a try!

Another little known Benedryl fact - one of the best ways to get rid of a canker sore in your mouth is to swish liquid Benedryl (again you can get the generic) in your mouth 3-5 times a day.  Just swish and spit it out.  Of course if you have allergies you might as well swallow it!  :)  It is especially helpful to do this just before a meal, because the benedryl numbs the sore so you can eat without a great deal of pain.  In addition to numbing the area, the benedryl works to really dry the sore out, and heals it quickly that way.  I know this has absolutely nothing to do with chronic pain, but sometimes just getting one more little thing like a canker sore when you're dealing with everything else can seem overwhelming.

Denise; I agree with Sherry.  This is one issue I have been working with my therapist on.  I feel like I should be able to fix everything and make everyone happy and it just does not work that way.  I think being a nurse has contributed to my feeling like this, if you are a nurse you are supposed to make everyone better or find out the reason why!  Your children are adults, the way they are acting is not your fault or your responsibility.  As Sherry said, there are just families like that, and I suspect there are alot of them.  Please don't beat yourself over the head with guilt about this - I know it hurts like the dickens, but you cannot put the added weight of feeling like you are responsible and must fix this to your shoulders.  I understand that these are your children, but you also have to realize that you have the additional factors of their wives, husbands, children, etc.  into the mix and that changes everything.  One of the best things you can do for them is to take care of yourself, nurture yourself, put your own health first and just let them get on with it.  If they want to make each other miserable, that is their decision - you can't fix that.  But you can work on yourself and I imagine you never have done that, that you have always put your children and family first.  It's now your turn dear, you take care of you.

Sherry; Wow - I am so sorry that you have had all these problems with your family too.  I agree with you, my side of the family now just consists of my Dad and me.  My husbands' side of the family is huge and I just love them to death.  I've lost my grandmother, grandfather, a very special uncle, my mom and my little brother over the years.  The last three should still be alive and thriving  now, but care for heart disease when my mom was alive was nothing like it is today, my brother basically drank himself to death and my uncle had diabetes and did not take care of himself well at all.  My Dad remarried after Mom died and that has been just a total disaster.  She has been awful to get along with, and just doesn't like me so much that I have had to restrict my contact with my dad because she would kick up such a fuss if I called that he was just having to bear the brunt of it all and it wasn't fair to him.  Right now however, she is in the middle to late stages of Alzheimer's Disease and my Dad is having to make the decision to place her in a nursing home.  He has been so faithful taking care of her -and is feeling so guilty that she needs to be placed somewhere.  She had to be taken to the hospital last Friday because all of a sudden she couldn't walk at all, my poor Dad told me that when he got home he felt like he had just got out of the State Prison.  He could go outside, go to the Post Office, things he hasn't been able to do because he just couldn't leave her alone for a minute.  Of course I have been feeling really guilty that perhaps all these behavioral issues she has had over the last 20 years were the beginning of Alzheimers and I should probably have been doing things differently with her.  My therapist says she knew I was going to say that - and that my Dad and she are grown adults who need to take responsibility for the things that have happened and certainly it is unlikely that her behavior 20 years ago was Alzheimers.  Families can be such a blessing and at the same time, so hard to deal with.

Just to give you an update on my feet - the left foot that just had the shock wave therapy last Friday is coming along okay, the right foot where I had the cortisone shot the same day feels terrible.  I have to tell you that I am the biggest woos you will ever come across.  The only way I was going to let my doc put that cortisone shot in my foot was if I was out.  The worst thing I worry about when I have to have surgery is them putting in the IV.  Once that is in I don't care what they do to me.  Weird huh?

Have a good day everyone!

{{{{Hugs}}}} to all!