Aa
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
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
zoe
Glad to hear I wasn't totally off base with my thinking - never know with the dang Fibro Fog!! LOL
I was thinking fibro as well while reading the OP. Best of luck to you.
Dave
C5/C6 SCI
Dave
C5/C6 SCI
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
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
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...
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.
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.
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