i am such a mess right now

i am such a mess right now, i am having constant pain in my knees, elbows, hips, ankles, wrist, fingers, shoulders, and neck....  i go to a pm doctor for my back and neck and he has prescribed me vicode 10/5 and a muscle relaxer i tried talking to him telling him about my knees, elbows, etc he took two blood test and told me if they come back fine then i am fine.... which really upset me because i don't want to be going to a doctor who isn't going to help me... i almost feel as i he doesn't believe me... my husband doesnt understand at all.. he says its all in my head and that i take too many pills... which i do take more than i am supposed to some days but ihurt....my arms hurt after doing laundry, doing dishes, my legs hurt and burn and ache from going up and down our steps... my neck just constantly aches, and burns and i get headaches all the time... i don't sleep....i wakeup at all times during the night my hands feeliing like someone is shoving needle through them, my elbows throbbing, my hips aching... i don't understand what is happeing to me and i am sooo scared and i feel so alone... if it wasn't for my 3 yr old son i would probably give up... my family is like my husband they don't believe me... its like because i don't have a broken leg or something and they can't see it they can't understand... but they see the pain in my face in my eyes.... but i don't think they want something to be wrong which neither do i so they just believe that i like taking the pills... which i have never ever in my life even taken anything stronger than tylenol before this point in my life i only drink on special occasions i don't understand why this is happening to me....i don't know what to do anymore or how to cope.... i feel lost somehow....like i'm falling apart and losing everything that is important to me.... the cold weather seems to make my body hurt 10 times worse... has anyone ever heard of anything like this?? does anyone have a clue what it is that i could do or who i need to talk to? any input would be wonderful.... thank you

[geminigirl1963]

I'm sorry you're having so much pain right now.  I'm no type of medical professional, but to me, your pain symptoms sound a LOT like fibromyalgia.  Some of the symptoms of fibro include chronic, severe, widespread pain in the areas that you have described.

You need to find a new doctor who not only treats fibro, but understands it as well.  Unfortunately, there are still a lot of doctors out there that do not believe that fibro is an actual disorder/disease just because there are no xrays or blood tests that will come back as "positive" for fibro.  Some doctors and other people believe, like you said, that since they cannot "see" a broken bone or a bruise or some other type of physical mark, that our pain is not real.  Believe me, IT IS QUITE REAL!!

It's definitely hard when our family members and friends do not understand what we are dealing with and how much we hurt.  I mean, after all, family and friends are supposed to be there for us when we are not feeling well, right?  It's hard.  The more you can help to educate your family on fibro, if that is what you have, the better off you'll all be.  One book that really helped me to explain things to my family as to how I hurt and what I'm going through is called "Fibromyalgia for Dummies".  It doesn't give a lot of medical jargon that nobody understands - it speaks in "regular" English and says quite a lot that we, as the patient, may not be able to fully explain.  A couple of things that are in that book that have stuck with me over the years is a)  Many, many years ago, diabetes was also a disease that doctors thought were "all in the head" - until they discovered how the pancreas plays a role in this disease.  and b) If you imagine the pain that you feel when you have the WORSE case of the flu that you've ever had - multiply that pain by at least 10 fold and endure that pain 24/7 -- and that may come close to the pain that us fibro patients feel.  When I got this book and read it, I passed it along to my family and friends to read and it really helped them to understand a little more about my pain and other symptoms (difficulty sleeping is a big one with fibro patients)

Again, I am not a medical professional, and I am NOT trying to diagnose you with fibro - I'm simply giving you information from my own personal experience.  But you really need to find another doctor who understands you and the pain that you are going through.  There ARE medications and treatments out there that can help with fibro symptoms - nothing will completely take away all the pain (at least in my experience), but there are things we can do and/or take to make life a little more comfortable.

I would suggest trying to find a rheumatologist in your area - a lot of them deal with fibro patients on a daily basis and they can sometimes give you more support and ideas than a pm doc can simply because they DO treat these patients every day.

Best of luck and keep us posted on how you're doing.  Remember - you're not alone.

P.S.  There is also a Fibro/Chronic Fatigue forum here on medhelp that you may find some more information and support on.

[zoe00]

thank you so much for replying to me.... just hearing what you have to say makes a huge difference in my world right now.. i've never felt so alone in my life... today is a really bad day... i ache and burn all over... i don't understand whats happening to me at all...i did as u said and there is  a clinic in my area that has rheumatologist i made an appointment they couldnt get me in until feb 11.... but that is something.... i'm scared to go...does that makes sense? i want to know so bad so i can prove to my family that i am not nuts... but i'm scared to find out too.... maybe i am crazy.... thank you again.... do you have fibro? and what have you been able to do to get relief?  is this rheumotologist going to be like my pm doctor and say the vicodin should be enough?  i wish it was enough.... my family make me feel like a pill popper but all i want is a little bit of relief.... the vicodin help a lil on good days... on days like today.... they really dont do anything at all....thank you again...

[geminigirl1963]

I'm glad you were able to find a rheumatologist and get an appointment in a relatively short period of time.  I know Feb 11 feels like an eon away right now, but there are some "specialists" that take even longer to get into.  One suggestion you could try also is to give the rheumy a call again and ask them if they keep a list of people to call in case of a cancellation.  If they do, request to be put on that list - if they have a cancellation, they start calling the people on that list and it's possible you may be able to get in to see them sooner.  Not all doctor's offices keep this type of list though, so dont' be totally surprised if they don't.

I do understand you being scared to go - I was too, but actually the not knowing is worse than the knowing what is going on with your body.  Be prepared for the rheumy to want to run some tests and possibly do x-rays and maybe even a ct scan or mri just to make sure there isn't something else they might be missing.  They more than likely will do a "trigger point" exam where they press on areas of your body to see if it ellicits (sp?) pain.  There are about 18 different trigger points that most fibro patients encounter pain when pressure is applied - in fact, one of the ways fibro is "diagnosed" is if the patient has at least 11 of these trigger points.  I'm saying "diagnosed" that way simply because there is no blood test or xray or other type of test that will definitively tell the doctor whether you have fibro or not.  Unfortunately, at this point anyway, fibro is largely a diagnosis based on elimination of some other diseases/disorders.  Again, this in now way, says that fibro is not real -- it definitely IS real.

If you can get a family member to go with you to the doctor's appointment, it may help in their understanding of what you are going through.  I found that having my mother go with me to one rheumy appointment made a world of difference in how she was able to understand my pain and also to help HER be able to cope with it.  There's nothing worse than seeing your child in pain and she was having a really hard time knowing I was in so much pain and there wasn't anything she could do to help me.

The rheumy may try a variety of different medications and treatments.  Different medications and treatments work differently on people, so what may work for one person may do absolutely nothing for you.  They may even suggest physical therapy.  For me, PT only made things worse, but it may be helpful for you.  One type of medication they will usually try is a kind of anti-depressant.  This does not mean that you are being treated for depression (which also CAN go along with fibro, largely because of the chronic pain), but certain studies have shown that some people get pain relief from them.  I, personally, cannot take them because I have an adverse reaction to them - pounding, rapid heartbeat, dizziness, jitteryness, nausea, vomiting.... so they are of no help to me.  I've tried at least 8 different kinds all with the same negative results.

Whatever medications the rheumy has you try, be sure and let your pain mgmt doc what has been prescribed and what the dose is so they can make note of it in your chart.  A lot of pm docs will do periodic urine testing on their patients and if a medication that has not been prescribed by them is found, they can and most times will, dismiss you from their practice.  This is a safety measure for not only them, but for you also.  Also be sure to tell the rheumy about the vicodin and muscle relaxer that you've been taking - again as a safety measure and also to avoid any problems with having two different docs prescribe medication.

If you are having trouble sleeping (again another common thing among fibro patients) - also let the rheumy know  - there are different medications out there that can help with that also.

I guess you can tell that yes, I do have fibro, as well as other health issues (asthma, lupus, severe osteoarthritis).  I was diagnosed with fibro about 10 years ago and like you, some days are better than others.  No days are completely without pain - and you shouldn't expect to be able to be completely without pain, even with pain medication.  But the goal is to keep your pain CONTROLLED at a point where you can function and do everyday life tasks.  I am on narcotic pain medication, muscle relaxers, sleep medication.  I also find that sometimes a very warm (not too hot) shower or bath helps to soothe my aching body.  Extremes of temp are not good, so nothing too hot or too cold.  I have more trouble with the cold than the hot.  Some movement and exercise is good, but definitely try not to overdo it - always good to start off with just gentle stretching and work yourself up to more activity.  Be aware of your body's signals and stop if you find yourself getting too tired or sore.  You may also notice that if, on a day that you feel relatively ok, you have done more than you're used to or your body really can handle, that the next day or so you will have much more fatigue and pain.  A lot of times you don't notice it the day that you have done the activity, but rather the next day or even a couple of days later.

I hope I've been able to help you with some of your questions and to alleviate some of your concerns.  Feel free to send me a private message if you'd rather not discuss something here on the boards.  Of course, you can always post a message here also.

Keep me/us posted on how you're doing.

Robyn

[DaveG77]

I was thinking fibro as well while reading the OP. Best of luck to you.

Dave
C5/C6 SCI

[geminigirl1963]

Glad to hear I wasn't totally off base with my thinking - never know with the dang Fibro Fog!!  LOL

[zoe00]

thank you so much for your imput... had a bad couple of days here... but its gonna get better... it has too... i've felt so  tired , achy, and burning lately i don't know what to do with myself... as scard as i am of this doc appointment i am also ready... sorry if i whine too much *thats what my family tells me*  i am definately open to anything this doctor wants to try or says... if he thinks it will help i will try it... i have been taking a lot of baths and showers... they help for a little while... my body has been cracking and popping a lot.. is that normal?  its all very weird and frightening to me i almost feel as if i'm falling apart.... thank you for writing... its truly nice to have someone to speak too who knows what i'm going through....it makes me feel like maybe there is hope and maybe i'm not nutz lol... how are you coping? i feel so rude i've never asked that question i apologize.....thanks again for everything hope to hear from ya again

zoe

[geminigirl1963]

Absolutely no need to apologize for ANYTHING!  We are all here to give each other support and information and if I'm able to do that for someone, my day is a success.  You are not whining at all.  I've been where you are with the family and friends not understanding what you are dealing with and not really realizing the kind of pain you're experiencing.  Actually, I honestly don't think anyone can understand fully the pain we experience - not even fellow fibro sufferers, as this disease affects people differently.  Just know that WE fellow sufferers DO understand more than someone who doesn't have the same pain.

Definitely try to be as open to the new doc as possible - even if the treatment suggestions they offer are things that you've tried in the past.  Because you are new to them and they are new to you, they will want to try everything from point 1 to find something that helps.  This may include a lot of different testing, as I said in a previous post.  I know it's hard, but also try not to get frustrated if (and more likely, when) the testing comes back as "normal".  If you have a good doc, they will continue to listen to you and continue to search for a way to relieve your pain.  If they don't - it's time to find another doc.

I'm glad the showers and baths have helped even a little bit.  I know it's a temporary ease, but every little bit helps when you're in pain - even 10 minutes of a little less is something you look forward to.  On bad days (unfortunately there are too many of them), I often get in the warm shower 4-5 times a day just to get a little reprieve from the pain.  If nothing else, I think it helps to relax me a little so I'm better able to deal with the pain.

I do also get the popping and cracking - not sure it's totally related to the fibro as I have severe arthritis all over my body also, so it could at least partially be from that.  My neck and lower back have been especially bad recently - actually wish I could sleep in a tub of warm water just so I don't get the pressure point pain when I'm trying to sleep (and miserably failing at it I might add).

Speaking of sleep, if you're having trouble sleeping, that's also quite common with fibro patients.  it's a vicious circle with that - the less sleep you get, the more you hurt -- the more you hurt, the less sleep you're able to get.  don't be afraid to ask the new doc for something to help with the sleep if you feel you need it.  Even with a sleep aid, though, I'm usually lucky if I get about 4-5 hours a night - again adding greatly to the pain.

Like I said, fibro is not the same in everyone who has it - with teh exception that basically for a "diagnosis", one of the criteria is that at least 11 of the 18 "trigger points" are tender to the touch.  In my case, I had all 18 (gee, aren't I the lucky one!).

What muscle relaxer/s are you on or have you tried?  Were you able to get a family member or friend to agree to go with you to the rhemy appointment in Feb?

One other thing that I feell I should stress again is that if you are going to continue seeing your pain management doc, it is imperative that you inform him/her of any and all medications that the new doc may prescribe so they can notate it in your chart.  Most PM docs will do periodic urine testing on their patients to make sure they are taking their prescribed medication as prescribed and also to make sure there are no other medications in their system.  If the urine test comes up positive for something they haven't prescribed for you, it could be a grounds for them to dismiss you from their practice.  Letting ALL your docs know what medications (prescription and over the counter) you are taking is a great safety measure - if they don't know what another doctor has given you, they won't know about any possible dangerous interactions between the medications.  If you can, it's also a good practice to go to the same pharmacy for your prescriptions as another safety measure against possible interactions.

Please keep me informed as to how you're doing.  I'm available anytime you may want or need to talk.  sometimes, although it doesn't alleviate the pain, it helps to vent to someone.

Have you looked at the Fibro/CFS forum here on medhelp?  If not, take a look when you get a chance and see if maybe someone else may have any more ideas or information that I may have overlooked (dang fibro fog!!)  Oh, and yes, lack of concentration does go along with fibro quite often, so if it's happening to you, don't feel like you're going crazy or having early signs of alzheimers.  There's many a time when I'm in the middle of saying a word and completely forget what that word was and I can't even begin to tell you the number of times I get up, go to walk into another room for something and cannot for the life of me, remember what that something was.  Not even retracing my steps helps.  Sometimes I think I have the brain, and body, of a 100+ year old when in reality, i'm only 46.

Feel free to drop me a line anytime.  Look forward to hearing from you again soon.

Robyn

[zoe00]

I definatley planned on telling my pm doctor about the rheumy app and anything that he gives me because i want to be honest with everyone... the rheumatologist already sent me paper work asking me if i was on anything and i put on there that i am taking the vicodin along with parafon forte *that is the muscle relaxer he prescribed me* i also take blood pressure medicine because mine is quite high sometimes and i take ibuprofen sometimes if my headaches get really bad...sometimes it helps sometimes it doesnt....i was actually just thinking about if forgetting things was a part of this....because yesterday i forgot my dads phone number.... i sat there looking at the phone and i just could not think of it for the life of me... i also go into room and completely forget what i was supposed to be doing or getting....its so very odd to me...because i have always always had a really good memory especially when it came to numbers bc i used to work in insurance.....it kind of makes me feel really insane and my family just looks at me as if i am nuts...i do go to the same pharmacy for everything thatis in my paper work that i signed for pm... i have also been losing my balance lately...and that is very odd to me... i used to go to country line dancing classes and work out doing boxing and stuff like that before i had my son and i have always had a good balance...but it looks as if i have suddenly lost that too....it all makes me so very sad...and mad....and the anger isn't really pointed at anything but myself really because i feel as if my body is letting me down...if that makes sense....i really don't understand why this is happening to me...did you feel like that? i think the anger also stems toward my family and my husband because they really do not undestand... my mom is going to go with my to my appointment bc my husband will be working but we have to bring my son is the reason she is coming and it is a 2 1/2 hour drive to get there and none of them want me driving that far alone...they truly do love me....i just think they truly don't want to believe that there is anything wrong with me because they cant see it....i do have a lot of trouble sleeping....sometimes i just wake up and can not sleep...other times i wake up hurting severly my hands, elbows, hips, and knees throbbing....or like this morning which isn't too very bad "i thank god for that bc i do pray every day* but this morning my hips, neck, arms *which it was just in my elbows, shoulders, wrist and hands, but now it is actually starting to go into my arms like deep into my muscles? i dont' understand it*and lower back were hurting but the vicodin and parafon forte helped a little this morning.... the pain really never goes away it just kind of dulls a little from the vicodin and parafon forte...but on bad days....nothing helps i am frightened of getting sleeping pills bc i have a 2yr old son and if something happened bc he couldn't wake me up i would never ever forgive myself he is the one and only thing that is keeping me going....he is my sunshine.....my everything.... when he looks at me and smiles or crawls up on my lap....even if it hurts idon't mind....he doesn't understand that it hurts mommy to carry him around so i just do it....bc he deserves it.... i feel he deserves more than i can give somedays and that makes me feel so very horrible inside.... but that is why i am searching for a answer that is why i am on here and why i called the rheumotoligist the same day you talked about it....because i need to be better for him....even if this is something that never goes away i'm praying to god everyday there is something anything that they can do to help....i am feeling depressed...is that part of this?  not extremely bad...just...i don't know how to explain it....i just feel really truly sad a lot...my son helps a lot because i can not feel sad around him so i hide it because i don't want him to see me that way...as sad i don't want that to effect him in anyway at all....
Thank you so much for answering my questions for talking to me and understanding... i really appreciate that more than i could ever express... i feel like my life is falling a part and you are giving me a life line whether you realize it or not... because i am realizing that there are other ppl out there who do care and do understand and altho i would never ever ever wish this on anyone bc it is horrible i am happy that there is someone who understands me i don't feel quite so alone anymore... i don't know you but you are a wonderful person and a strong person just from what you have said and i admire you.... thankyou again for everything...i hopeyou have more good days than bad :O) i think that is the best i can wish for you... :O)

zoe

[Tuckamore]

Hi Zoe,

I've been off the forum a bit due to my father's declining condition but I have been following your thread. I'd like to Welcome you to our Forum. Geminigirl has offered you some great support and insight.

I do not have Fibro. I do have constant chronic pain (cp). So my comments will not come from personal experience with Fibro. But it didn't take me long to learn that we chronic pain sufferers all have a lot in common regardless of the reason for our pain.

As I state I do not have Fibro but I too have a "Fog" and I have trouble sleeping and concentrating. These can go hand in hand with ppl that suffer with many sources of cp. I do have two close family members that have Fibro. If I understanding you correctly you do not exhibit the classic symptoms of the syndrome.

The most pronounced or primary symptom is increased sensitivity to pain that is generally felt in the muscles, tendons and ligaments. Fibromyalgia syndrome and other types of chronic pain (cp) diseases form a family of overlapping syndromes. Therefore, even though the most common symptoms are pain and fatigue in muscles and tendons, often it is seen that those suffering from fibromyalgia will have other associated conditions and symptoms. Fibro effects 3-5% of the population. It knows no age or gender barriers.

Although the muscles hurt everywhere with Fibro, they are thought not to be the actual the cause of the pain. It is beleived to be a malfunction in the way your body interprets messages. The diffuse, body-wide symptoms are greatly magnified by these malfunctions in the way the nervous system processes pain.  

There are nine trigger points (meaning when pressure is applied to these areas you experience increased pain) that are generally used to diagnosis Fibro. These trigger points are: Back of the head, Between shoulder blades, Top of shoulders, Front sides of neck, Upper chest, Outer elbows, Upper hips, Sides of hips and Inner knees.

Usually the primary symptoms are not joint pain which again if I understand your post, seems to be your primary symptom. I do not pretend to know if you do or do not have Fibro. I am just trying to offer you additional information.

I think it was astute of your physician to look at all possibilities to explain your pain. Examining your blood will provide him with more information. I assume he is trying to rule out, RA, Lupus or other similar conditions that would account for your joint pain. It may be wise to rule out Lyme's Disease also. I think when your physician said, "You're fine" he meant if the tests came back negative that meant that you did not have one of these often crippling disease that the tests are designed to diagnosis. If he thought you did not have pain I doubt he would have prescribed anything for you. But time will tell. If he treats you with disbelief there are other physician out there.    

I am sorry that your not all your family is supportive and understanding of your cp. That is often a fact for many of us. Some will change as time progresses. Educational material may help. It is just difficult for ppl that have no pain to understand what we face day in and day out. They cannot possibly understand how just how just getting out of bed can be so challenging when they can run without any major problems. They are at a loss to comprehend our disease. They have no comparison. But be patient and "teach" them.

I can send a PM containing some good information regarding cp and how it effects us. I encourage you to remain active in our community. The support, caring and information on this forum has been a source of great strength for me.  Please continue to keep in touch. I wish you the very best.

Take Care,
Tuck

[geminigirl1963]

You are definitely NOT alone in your suffering.  There are many, many of us suffering with fibro and other forms of chronic pain, so please do not ever feel that you are alone in this - even if your family makes you feel that way.  I'm glad you have someone going to the appointment with you, I found it really helped my mother to understand what I was dealing with when she went to a rheumy appointment with me.

Yes, the forgetfullness and depression can go along with fibro - not all patients have these symptoms, but they are quite common.  It's also not uncommon to feel like your life is coming apart at the seams - after all, here we are one day vibrant and full of life, able to do anything and everything we wanted to do and then we get struck with this horrible, unending pain and fatigue that just pulls the rug right out from underneath us and we find that we are sometimes not even able to do the simplest things that used to bring us such joy and be so easy.  quite often one of the medications that the doctors try is a type of anti-depressant.  If they do this, they are not saying that you are clinically depressed or have a mental illness - some patients do get pain relief from these types of medication.  I, personally, cannot take them - have had too many adverse reations to them.  Just being in constant 24/7 pain can be very depressing.

I can understand why you're leery about sleep medications.  There are a lot of different ones out there at different strengths, so it may be that your doc could find one that allows you to get some rest, but doesn't totally zonk you out where you would have trouble waking up if your son needed you.  Another idea - but definitely talk to the doc about it first - is possibly something like Benadryl at night.  The antihistamine ingredient in Benadryl is often found in over the counter sleep aids.

I know you said you've been taking a lot of baths and showers and they do help for a short time.  Consider taking one right before bed - it might help to relax you enough to be able to drift off in less pain.

You more than likely will find that even with pain medications, muscle relaxers, sleep aids, or whatever else the doctor prescribes, you won't be 100% pain free.  That would be wonderful, but it's and unrealistic goal with fibro.  The goal is to make your pain level low enough to be able to get through the day and be able to do what you need and want to do.

Lack of balance can be a combination of things - medication can sometimes cause or add to this, lack of sleep, PAIN itself - especially if your'e having pain in your back or legs and may be "adjusting" your stance to help relieve some of that pain - it can throw you off balance.  About the only thing I can suggest for this is to definitely get up slowly from sitting or laying down and if you can avoid it - try not to bend over at the waist to reach down for your son or to pick something up off the floor - you're much better off bending at the knees (I know-OUCH!).  Keep in mind, too, that sometimes elevated blood pressure can cause you to be off balance (it does for me sometimes).  Do you notice it more if your blood pressure is elevated?

You never need to thank me for answering any questions or concerns you may have.  It's my pleasure. As I've stated before, I'm not a medical professional at all, but I certainly do have personal experience with the symptoms you've been experiencing so hopefully can help you to understand what's going on a little bit more by living with it myself.  Thank YOU for thinking I'm a good and strong person --  I really do appreciate that, even though I do not feel strong at all most days.  Like you, I just keep trying to put one footin front of the other, not only for loved ones around me, but for my own sanity as well.

I, too, wish for you more good days than bad.  Please let me know if there is ANYTHING that I can do to help alleviate some of your worries/concerns and if you have any more questions.  Also, please be sure to keep us posted as to how youre' doing and especialy what the rheumy has to say in February.

(((Gentle hugs)))
Robyn

[NoMoMeth4me]

It looks like you have had many great repolies to your post and I want to start by saying I am so sorry you are struggling with pain as much as you are. It sounds as if you have MANY different diagnosis so I hope they can figure it out soon.

I can relate to your frustration of your loved ones not understanding and doubting your pain, that is SO very difficult to deal with. I'm attaching a leeter that was introduced to one of the forums last week and it brought me to tears when I read it. It mirrrors my life to a tee, if you feel brave enough, it may be worth sending a copy to your loved ones so they can perhaps better undertsand what you are dealing with and the fact that you require just an ounce of understanding in your battle.
Some have posted this letter to their social networking website such as facebook or myspace. Here goes.

LETTER TO PEOPLE WITHOUT CHRONIC PAIN:



Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.


In the spirit of informing those who wish to understand ...

... These are the things that I would like you to understand about me before you judge me...

Please understand that being in pain doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.


Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been in pain for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.


Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.


Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.


Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.


Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.


Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.


If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.


If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.


In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.

AUTHOR UNKNOWN

[1tiredchic]

This letter from author unknown is very true..It is true that you really do not understand until unfortunatley it happens to you..  My mom has had fibromyalgia and it has forced her to go on disability, she has also experienced a mental breakdown 14 yrs ago.. I am quilty of not completley understanding I attributed all her pain to a car accident she had that broke her pelvis in 1990.. My mom is my best friend we are eiothers support.. i too am suffering evreyday with this chronic pain condition that I have yet to be diagnosed with.it has been getting worse the last 4 months.. My mom thinks that it is probally fibro? Do not get me wrong I have always supported my mother always listened (just never understood in the way that i do now) It is truly a lonely problem.The docs will ask if you are depressed (a yes, it is life changing)but yet we go on.. I always try to pyche myself by saying i don't have time for this ,but my body just doesn't want to listen.i push and push when my body says enough..I can't just relax! My body feels tense to the point of breaking. I get close to answers but yet so far. My blood work is showing high sed rate, and high Iga(inflammation in intestines) i know something is going on just don't know what. So yes I am listening when my mom says she is exhaused and in pain!  AND YES I UNDERSTAND!!!! thank you all I needed to get this out, I have it balled up inside waiting to explode..Better health wishes to all!!

[igarfy]

I loved your post. You and your mom are on quite a journey. I wish you both so much love and compassion. I am like your mom. Was anything broken in her pelvis? I was in a auto accident in 2005 that borke 10 ribs on my rights side andI had lots of soft tissue injury to my sternum. I had major bruises where the seat belt went around my pelvic area. Now 3 years later I cannot sit and they cant figure out what is wrong. It starts in my pubic bone then goes all around to my back. Is this anything you know about?  thanks and hugs to both you and your mom

[igarfy]

My heart goes out to you. We on this list know excatly how you feel.

[1tiredchic]

Hi Igarfy; Thanks for your comment that is nice,,..Yes my mom broke her pelvis and was laid up for some time..She at the time did home care for a couple so I took over for her.. After healing she started having all these symptoms and i assumed went through the gament of tests to rule out other problems.  I believe now her breakdown was most likely due to alot of meds and depression from not being able to work and being in so much pain.  We now talk about our pain together, although mine has not been diagnosed yet> My blood work shows inflammation, also in the bowels I will be having my second colonoscopy in March they think i have Chrohn's? (2 yrs ago colon polyps removed) I am only 38.. (you know i usually get the your too young thing)I also suffer from sleep apnea and now wear a cpap mask.. I will be scheduling an apt with a rheumatoligist soon.... To rule out MS,ARTHRITIS,LUPUS ETC..But I think I had an infection that is causing all this ..I also just got over drug induced hepatitus (hepatitis) in OCT.(Tylenol overuse) So I am a mystery.  I hope to hear from you again!  THANKS

[Tuckamore]

Yes I do know that the letter does a great job of explaining how ppl feel that suffer with with chronic pain (CP). I have that letter along with other information listed in my MedHelp Journals. I can post the other portion of that for you.

Believe me I have had CP for near 20 years now and can relate not only to that letter but to others like me...and you that struggle to cope minute by minute. Most if not all ppl with CP find it is often a lonely journey. You are very fortunate that you and your mom can support one another.

I am sorry that you and your mom have chronic pain. I was also in a MVA that by all accounts I should not have survived. But I am just that, a survivor. Being forced to give up your livelihood or career can be painful. It requires a lot of mental adjustments. I've had to do the same and my heart goes out to your mom.

Crohn's and Ulcerative Colitis are Inflammatory Bowel Diseases. Unfortunately I am familiar with them also. My son has had Ulcerative Colitis since the age of 10. He has come close to losing his life during some severe and nasty flares. I am so sorry that you may have Crohn's Disease on top of the Hepatitis.  

You've come to the right place. MedHelp's Pain Managment Forum has many wonderfully supportive and informational members. We are here to support you and your mom if she wishes to join us.

[Tuckamore]

Here is what I promised to post that goes hand in hand with the "Letter." Both have been posted before but they bear repeating. I emailed both of them to my friends and family members some time ago. I had some very good responses. Many said it helped them understand my pain better. Of course some never responded, as I expected. I think most of us could have written either one or both of these.

TIPS FOR DEALING WITH PEOPLE IN PAIN

1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

6. Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

Author unknown

Tuck

[chasingthehigh2]

tuck, thks so much for the Dealing with Pain.. says it all. thks again!!

[NoMoMeth4me]

Agreed!!!

[1tiredchic]

That really is true what this says and what you say! Thanks for the encouragement! I thank goodness no longer have the hepatitus (hepatitis) at least my liver is back down to good levels(it was the tylenol too much)it was at 230 at the time. I still am undiagnosed all i know is that i have widespread inflammation and chronic pain.(the blood test says 80% of people with the High IgA level and atypical panca have chrohn's so unfornutly it doesn't look promising.(colonoscopy though in March) I need to get in to see a rheumatologist I think that i had an infection that has gone haywire.(ive had tooth infections &pelvic recent that were hard to treat) hence all the antibiotics and tylenol that caused the flare with the liver. I also have high sed rate rate now and low calcium,vitamin d and high bun/creatitiine level so it is all confusing.On top of all that sleep apnea (oh boy!) thanks for listening! it is true though co-workers will ask how have you been feeling (sometimes i just want to say fine , because if i try to explain i get that look. you all know that look)sometimes it's best not to say anything/I'm glad i found this site.Please feel free to post me anytime all and tell me how you truly feel I will listen....

[zoe00]

hello, how are you today?  today hasn't been the best for me... i woke up around 4 hurting had an app with my pm doctor today he said the 2 blood test he ran came back fine and there is nothing he can do for me he said "you know your own body more than i do there is nothing i can prescribe you so deal with it."  i was completely and utterly blow away.... i just don't understand.... i told him i didn't want him to prescribe me anything else i want to know what is wrong with me... he said i will see you in 2 months goodbye.... so i am now going to find another doctor because i dont think he truly wants to help me... what do you think?  i just feel that i am dealing with enough now... more than i can really handle and then the doctor *someone who is supposed to help me* tells me that its my body i know more about it than he does deal with it?!?!?! wow...the more i think about it the more i am blown away....he is a doctor, isn't that what doctors do? help ppl figure out what is wrong with them?  thank god i have a rheumatologist appointment because i really belive in my heart that the rheumatologist my help me... i have to believe that....talk to you soon i hope...


zoe

[zoe00]

thank you so much for that letter i am definately going to print it out and give it to my family... it made me cry when i was reading it... it fits me to the T almost.... thank you for reaching out...i appreciate everyone on here that takes just a moment to read and respond you guys are all wonderful thank you again

[Tuckamore]

I am sorry that you had a bad night. OI hope you know that the Tips for Dealing with Ppl in Pain was mean for you and everyone else.

I am hopeful that you will find the consult with the rheumatologist to be beneficial. The physician that told you to "deal with it" does not sound like he is very empathetic. Sometimes I would love to give these Docs my pain (or your pain) for just a week. Let them "deal" with it. I truly believe there would be more compassion and empathy extended to their patients. Maybe a week isn't long enough because if you know there is an end, I think it's easier to handle.

Thank you for keeping us current with your symptoms. I hope you will find some releif and very soon.

[zoe00]

yes i definately agree i would love for him to feel the way any of us do for a week...actually for just a day when its a bad day... but then i feel horrible for wishing it on someone else...because honestly somedays i feel as if im living in my own personal hell....i went to my family doctor todaybecause he ran some test and they all cameback negative so he said he believes that i have fibromyalgia.... or myalgia? i don't know... i just wish i could go back to being my normal me.. before all of this but then i imagine everyone does.. i don't feel as if there is a end in sight or even a hope somedays..today is a rough day i guess its just hard to deal with it all, you know?  he prescribed me ultram?  i'm going to get off here and look it up ilike to know for sure what i am taking before i ever touch it...you know the odd thing before a year ago i never took anything more than a tylenol or ibuprofen.,.. never did drugs... i only drink on special occasions... and here i am in pain constantly and having to take these pills...i hate  it my family all act as if am a pill popper... and i would give anything in this world to never take another one again...
thank you again for everything how are you by the way?  you said your dad was having problems? i feel so rude not asking! you all listen to me so anytime you need to vent or anything feel free... i know i need ppl like you guys... any use i can be to you would make me feel better too...

zoe

[Tuckamore]

Don't feel rude for not asking about my father. We all have our crosses to bear. When we are overcome with chronic pain we have all we can do to worry about putting on foot in front of the other. I know I've been there and often still am.

If you have Fibro and I have no reason to doubt your diagnosis, you'll earn to handle it. When one is first diagnosed with chronic pain they go through similar stages that one that faces with grief or death. We often feel a part of us dies and we grieve for that loss. We long for the "old me", the person we knew so well. Dr Kübler-Ross first identified the five stages of grief in1969.  

I've been through them all, as most of us have. The first is Denial, than Anger, than Bargaining, Depression and finally Acceptance. We can bounce back and forth between any of them. Some of us never leave a stage, some skip a stage. But knowing what you are going through I find helpful I operated in the Denial or Anger stage, for a long time which would briefly take me into depression. For the most part I have finally reached the Acceptance stage. I find this stage more peaceful and productive for managing my chronic pain and the changes it has brought to my life.

We should never give up hope, acceptance does not mean that you lose hope. For mean it means that I am just more realistic. These are the cards that life has dealt me and I will play them the best I can.  

Your family will come around. Those that love you will want you to be comfortable and functioning to the best of you ability. My husband will say, "Is it time for your pain medicine? You're limping pretty bad. I'll get it for you." Or, "You look horrible. When did you take your last pain medicine?"  In time your family may also begin to  "help" you and understand that though none of us want to take these darn "pills' they are often all that keep us functioning. You should not be ashamed of that fact, nor feel guilty or feel that you have to apologize to anyone. You have a disease. One you did not ask to get. Just as a diabetic or lupus patient has a disease, so you do.

Ultram is a brand of Tramadol. It is not a scheduled opiate. However it acts much like one, similar to morphine. Some ppl have found it to be effective in pain control. It does have addictive qualities. Due to that fact it is my guess that soon it will be considered a controlled substance. I hope it will be effective for you.

So hang in there. You'll make it. Stay with us and we'll support you the best we can.

[1tiredchic]

Hello; Just a update!  My sleep doc prescribed some Trazodone for insomnia.. On Cpap as well (sleep apnea/hypopnea). Also went to see primary doc..I see a different one pretty much evreytime.. She is going to run tests for lupus and rheumotiod factor,ANA..Also recheck of Vitamin D at last check 8 weeks ago it was only 14.. She is referring me to a rheumotologist. and put me on celebrax ( I will get that this weekend) anyone else taking that??? I just want to get to the bottom of this all..At least if i have a diagnosis I could find the right treatment., Pain has been getting alot worse lately with muscle weakness, eye twitching,face flushing,feel feverish,high heartrate,chest pains,headaches etc........... Thanks for listening!Any advice is welcome...

[zoe00]

sorry ive been gone.... kinda of been in denial...and a lot of pain...and more denial... i just wanted to say i went to the rheumatologist today... he said he believes i have a central nervous system disorder.... i have to go back for more testing next week... blood test and x-rays... i'm not quite sure what any of this means... was hoping someone might understand a little bit more than me... thank you all for everything..

[jon799]

Hi
what is your situation now?

[Enajones]

I have been diagnosed with fibromyalgia. It started about 6 or 7 yrs ago. I have ALL if ur symptoms. There is no doubt in my mind it us what u have. The first rheumatologist I seen did absolutely nothing but check all my points and rake blood. I was so disappointed bc I expected so much more. He never done any other testing and u had to drive 2 hrs to see him so after a yr or so I quit going. I stay in so much pain and it is getting worse. There was a new rheumatologist that set up practice only 30 min away and u just started seeing him he has taken blood test every time I went but has found out some things that the other never did. My muscle enzymes are really high so he sent me for an emg. The dr doing the emg decided to check my back also. After checking both legs which is where I have most of my pain. The nerves and muscles in my legs were fine with no damage. He started to tell me I was fine. Then he checked my back and said the nerves in the bottom of my back are messed up and that is why I am having so much back and leg pain. I've not seen my rheumatologist yet I go in a few days to see what he wants to do from there. My point about all of this is don't give up bc even a specialist can shrug u off!! I thought they would all do the same as the first!! I know God has put this one in my life! I pray u find relief soon! I only take trammadol for my pain which eases it at times but I think I have been on it so long that it really doesn't help anymore. Even this new rheumatologist acted like(at first) that I was there just trying to get pain meds! I figured that would happen tho bc where I live drugs are bad and there are so many ppl going to the Dr's for pain meds. After getting some blood results tho he changed his attitude! I also pop and crack ALOT!! I do have arthritis to. My inflammation level is really high Also.

[charmain711]

zoe00 i read your note and i really feel for you i am also in constant pain and spend most my time in bed and that is not a lie i try and get up for a few hours at night to sit with my husband constant pain is an awful thing to suffer with i had my gall bladder out 13 years ago then 5 diff oper on the same place to try and stop the pain now i am on loads of pain killers including morphine i do not know about you but i just feel like my life is a waste i feel guilty all the time because i can not do anythinh i feel for my husband as i am in bed all the time i really could go on about so much more but just wanted to say i really feel for you i hope some kind dr acually listens and trys to help you get your life back my heart really is with you