That Pesky Pain Scale

You bring up a good point, Cindi, when it comes to whether to rate your pain before or after taking medication.  I think it would be helpful to the doctor to do both.  Tell him your usual pain level before taking your meds and then your level after the meds have taken effect.  This should help him know how well different medications are working (or not working).  Thanks for mentioning this. 

thanks , karen, at least, you understand me...wheni mentioned this to the dr/n.p., they said "just write what your pain level is at now"..well, ALL my drs. are hours away , and driving is one of the things that bring my pain, thru the roof:)..so, as i said, i just do not fill it out, anymore..they don't like this at all...but i just do not "understand" it...one of the drs. , i WAS going to said to me..i just put down 7's and he commented, that if i am always in 7, that why am i taking pain meds, if they don't work, gosh, you can't win, w/some drs..!  of course , the pain meds do work (somewhat), but i thought ,howw arrogant of him, why did he not ask me, are you eever lower than a 7? THEN, i would have explained to him....

I know what you mean, Cindi.  Sometimes doctors just don't ask the right questions.  I suspect it's at least partly because they've never experienced the kind of unrelenting pain we deal with and they don't really understand the nuances of pain we may go through.  Don't hesitate to take the initiative and tell the doctor what you think he needs to know about your pain and how the medication affects it – even if he doesn't ask.  Help him understand how you feel and what you need. – Karen

oh, karen, i DO!...at first, i was intimatated my all the drs., but i am the one putting bread (lobster:)on thier table, as i have started to think of it that way, after many drs!:)...the only thing i STILL have a problem w/ is asking then to "up" my pain meds, or to switch me to something stronger (because at the moment, my pain meds JUST about take of the edge, if that ,at times)..i STILL feel ,  they will look at me as a "drugseeker"..as i have gone thru that , more times than i want to think about..some of the drs. didn't even "think" i was in pain, because the MRI's never shown anything, that should have me in "this much pain"..i don't care what an MRI shows..i am in pain, and sometimes so unbearable , i cannot get out of bed to make my son breakfast ( he understands)..well, i didn't want this to turn into a "bitch :)" session..sorry,,,cindi

hi, not karen, but i felt i neede to respond...you have gone thru way too much pain ..and i am sorry for this, has ANY of the meds you mentioned , worked?? i know about the gaining wieght crap, i have been on , like 90% of the meds you have been on...it sucks, to say the least!!..i have put on 120 #, off and on , with these meds and right now they have me on lyrica( iKNOW i am gaining wieght from it, because i wieghed myself BEFORE i started taking it, anywya, lyrica, celebrax, fentanyl and morphine ( morphine, only for a short time , because i had RFA, and it is very painful, HAVING it done and AFTERWORDS)...can't tell you to go to different drs., because it sems you have done, everything you can , in that department..but are ANY of these drs. helping you w/ the pain, at all??...geez, i don't really know what to telll you, but  i wanted to write, because you have seemed to have gone thru "the ringer"..if you ever need to talk, cry vent, please feel free to write to me..or anyone on here, that is what we are here for...i do feel so bad for you and am sorry i cannot help you, the only way i know how to help you is to "talk with you"...i sure hope you find some relief, real soon!..cindi

Hi Jane – I'm so sorry to hear you're living with so much pain. I know very well what it's like to be so miserable and feel like you have no quality of life anymore.  While I can't promise you no pain, it is possible to get pain under better control and to have more quality of life.  I'll try to address several things that you mentioned.

First, it sounds like you're skeptical about whether fibromyalgia is even real.  I can assure you, it is a very real illness.  Research continues to reveal definite physical/biological abnormalities in people with FM.  I'm not surprised to hear yours developed following gallbladder surgery.  FM is usually triggered by some kind of trauma to the body, like an accident, surgery or a serious illness.  What basically happens is that the central nervous system malfunctions and turns the body's pain signals on high, making us hypersensitive to pain.  Things that are not even painful to the average person can be excruciatingly painful to someone with FM. 

You mentioned having difficulty concentrating.  Cognitive functioning problems such as memory loss and difficulty focusing or concentrating are common problems for people with FM.  Studies have shown that we have decreased blood flow to the areas of the brain that deal with cognitive functioning.  

As for the weight gain, unfortunately, that too is not unusual with FM.  I think it is a combination of some medications that cause weight gain and the fact that we tend to move around and exercise less because of the pain.  Lyrica, the first medication approved for the treatment of FM, is well known to have weight gain as a common side effect.  In fact, I've heard from quite a few people who say they gained a lot of weight in a relatively short period of time when they started taking Lyrica.  Unfortunately, they also said the weight was not easy to lose after they stopped taking it. 

Those who have had the greatest success treating FM (including me) almost always use a multi-disciplined approach, combining medication, complementary therapies, movement and lifestyle adaptations.

Medication – When it comes to medication, everyone responds differently, so what works for one person may not work for another.  It's generally a matter of trial and error to find what is best for you.  It sounds like you've already tried quite a few medications and med combinations.  You're probably not going to find any single medication, or even combo of meds, that will take all of your pain away.  But through trial and error, try to figure out what works best for you to at least dull the pain a little.  Then with the addition of some of these other techniques, hopefully, you'll be able to get greater pain relief.  Also, be sure not to wait to take it until you're already in bad pain to take your medication because once the pain cycle gets started, it will be much more difficult to get under control.  Always take your pain medication on a regular schedule to help keep a rein on pain.  (Read: Preventing Fibromyalgia Pain)

Movement – Most experts say to exercise, but what we usually think of as exercise is often too much for people with FM.  The important thing is to move as much as you're able.  Sitting or lying down for too long will actually cause your pain to increase.  If nothing else, just walk around your house or do some gentle stretches to keep your muscles from becoming stiff and more painful.  Warm-water exercise is also excellent for FM.  (Read: Water Exercise Benefits Fibromyalgia)

Alternative/complementary therapies – Many people with FM find it helpful to use some complementary therapies like massage therapy or yoga.  The two that have done the most for me are Myofascial Release Therapy and Acupuncture.  (Click on the links to read more about them.)

Lifestyle changes – Try to notice which things you do that end up causing your pain to increase.  You might even consider keeping a log or journal noting what you do and your pain and fatigue levels each day so you can look for patterns.  For instance, household chores.  I've found that I can dust and do dishes without too much problem, but if I vacuum, mop or scrub bath fixtures, I'm in major pain for days.  Now I get my daughter to come do those things for me.  (I've also learned not to be as picky about how the house looks between cleanings.)  The point is to try to get help doing the things you know are going to cause you pain.  If you can't afford to pay for help, perhaps you can swap services with a friend, doing something you're able to do for her and vice versa.  Here's an article with some other lifestyle tips that may be helpful:  Little Things Can Make a Big Difference

I know I've given you a lot of links to other articles to read, but I have to give you one more.  I've written quite a few artcles on different aspects of fibromyalgia and I'd like to encourage you to read some of them as you're able and feel up to it.  The more you learn about your illness, the better able you wil be to get it under control.  Here's a link to our FM section:  Fibromyalgia

Finally, I'd like to comment on the pain scale.  You mentioned telling doctors that your pain was a 10 or higher.  I know that you were trying to get them to understand how much pain you were in, but unfortunatley, when you do that, what doctors hear is that you tend to exaggerate and they won't take your pain as seriously as you need them to.  It's important that you the pain scale seriously and use it in a way they can accurately understand what you are telling them.  Please refer to the scale in the article I linked to in this original SharePost.  You might even want to print it out and carry it with you so you can show the doctor exactly what you mean when you give a number for your pain level. 

I hope at least some of this is helpful.  Just know that there are a lot of us here on ChronicPainConnection who are also living with a great deal of pain daily.  We're here to encourage and help you in any way we can. –  Karen

Hi Karen,

I am so sorry you are feeling so much pain and not able to find a sympathetic doctor.

I was misdiagnosed with fibromyalgia approximately 20 years ago. I am beginning to strongly suspect that there are many people being misdiagnosed with Fibromyalgia when the doctor can't find another answer.

I would recommend that you consider the possibility that you may be dealing with something else, Dercum's Disease (aka adiposis dolorosa or Ander's disease or fatty tissue rheumatism). This disease actually causes you to gain weight and is more painful than Fibromyalgia from what I understand and have experienced. It is currently considered a rare disease by the World Health Organization and by NORD (National Organization for Rare Diseases). It is my personal belief that it is mostly misdiagnosed as Fibromyalgia. There are hardly any doctors who have even heard of it. It is more well-known and studied in Sweden. There is also a doctor specializing in the US. Her name is Dr. Karen L. Herbst (www.lipomadoc.org). You can find other info at www.dercumsociety.com. Another very informative website is http://dercums_data.tripod.com/brorson.html

I often felt like I had been run over by a bus and was chronically fatigued in the early days of my disease.  Since I am now heading toward menopause, when the condition typically worsens, it feels like the bus ran over me and then backed up again. I also am starting to have trouble walking; I get cramping in nearly every muscle in my body at the slightest movement. The lumps beneath my skin (on my inner and outer upper thighs and on my arms are extremely painful. The type of pain I experience is predominantly nerve pain, but I also experience bone pain (like somebody is twisting them, throbbing and aching), muscle and joint pain, and what feels like tendonitis, as well as tension/migraine type headaches and crawling, electrical sensations in my legs which nearly drive me up the wall.  After becoming desperate I began doing some online research, looking for answers I couldn't get from the doctor. When I "googled" my first major symptoms (which I started getting in my mid-twenties): "painful subcutaneous lumps", Dercum's Disease kept coming up.

I am currently using some new and experimental drugs to help control the pain. I have a very understanding and sympathetic doctor who is willing to allow me to do this. At present I am using "Cobroxin" (available online at www.cobroxin.com), a dilute form of cobra venom for pain relief, which has next to no side-effects, can be used alongside other drugs, and is similar in effect to morphine. It does not completely take the pain away, but it does help. The presecription I am using is Low Dose Naltrexone, an immunomodulator and pain regulator (retrains your body to release its own endorphins) which is currently being clinically tested for use with Fibro, as well as things like Multiple Sclerosis and AIDS, etc. Another product I am using is "Neuragen" (available online at www. neuragen.com) a topical oil which is quite effective in relieving nerve pain. I have since started making my own, copying the list of essential oils listed on the bottle, since it is quite expensive to buy the registered version. You will have to buy a bottle before you can make your own, since the ingredients are only listed on the bottle, not on the website.

Whether this information is helpful to you as an individual or not, I do want to make this information available to all Fibromyalgia patients, since they may also find some pain relief from these products which have minimal to no side-effects compared to so many of the other pain meds out there. Also to encourage those sufferers who are not satisfied with their doctors diagnosis of Fibromyalgia. Be sure to check out the web addresses I have provided for further investigation and then give the doctor the information so that he can do further investigation. Fibromyalgia is a very ill-defined disease, and is frequently used as a blanket diagnosis for pain that doctors do not understand. It is time that patients who are suffering with intractable pain begin to be more assertive with their doctors if they are not satisfied with either their diagnosis or thier treatment. I believe there are many patients diagnosed with Fibromyalgia who have Dercum's Disease and do not know it. I want to get the word out so that the disease and the symptoms can be treated properly, and to get more reseach done on various pain syndromes. There is a lot more to it than just calling it all Fibromyalgia.

Wishing you all the best,

Bonnie

The description of the numbers on a pain chart (numeric: 0-10 point scale or visual analog scale: where you mark a 10 centimeter line) should always be accompanied by the written/verbal explanation which Karen posted initially. I have used this in clinical practice for decades.  I am surprised to learn that it is not appended to the scale in many clinics. Shame on them!

There is another tool that is very useful for children whose language skills may limit the traditional scale, and for those who are not well skilled in speaking and reading

English, as an arbitrary example. This is a row of icons such as smiley faces that get less happy as the number climbs. I actually had someone write that it could be "offensive to one's intelligence" when I submitted a paper for publication. I informed the reviewer that there was good research supporting the use of this tool, etc., and referenced the research.

Another very helpful tool is the FS-36/HS-36 which is a general health scale that explains in sentences, a total of 36 inquiries such as regarding sleep: a) I can sleep all nite, b)... c)...d)I sleep poorly, etc. There are other scales for nearly every region of the body, in fact several differetn ones for one area. One example is the Oswestry Low Back Scale, etc., etc.  I find these very helpful as they tell an  interpretative story. Shame on the clinicians that purport to treat pain and do not use them! But we can take charge and bring our own, after getting to know the Physician and perhaps politely asking permision-more as a team-building exercise than a necessary request-diplomacy works!

I so much hate when the interpretation of any diagnpostic procedure or specialist evaluation does not connect the dots. Rather than just name the pathology, an interpretation should be stated such as my arbitrary example "the severe spinal stenosis as demonstrated in this CAT scan validates the subjective complaint of bilateral lower leg numbness after walking 1/2 of a city block"..etc.

Please do a web search by condiiton or anatomical area for a Functional Scale to learn more. Sometimes they can be very self-affirmiing; I see I am NOT crazy, no wonder I can't do a, b, c, etc.

A suggestion, when you see your Physician very clearly, but briefly write out HOW the pain or dysfunction is impacting your life. When my insomnia is out of control, I can explain it by saying "I am so exhausted, I know I am in trouble because I periodically start bouncing checks such as happened last week". I am usually very meticulous with finances.."

Best Regards

jerry Hesch