Over the years I have been told everything is fine, it might be "stress related", and perhaps a mental health expert could help.Perhaps you have had the same treatment, how did you handle it? What do you take for pain if you aren't tolerent to most pain meds?
Gia
I've had the same kind of experience - docs just want to give me antidepressents or say exercise more etc. My last doc retired but I'd pretty much been going it alone anyways. The last doc I saw said "you have fibromyalgia. I can't help you, no one can help you." I take glucosamine for the joints. I use hot and cold compresses. A535 ointment. Gentle stretching exercises. Hot baths. When it's too much I try some T1s and/or Advil migraine liquid gels or the Robaxacet with codeine (not that they help much...) I also suffer from Osteoarthritis, TMJ and migraines...not much I can do there either. Not that I want to endorse this for everyone, but I had to throw away all my prejudices and imbibe in something I never thought I would. The best help I've received so far for my pain is from marijuana. Like it or not, it's the only help I've got. Doctors hear what I've got and don't want to touch me. Too much work.
... and refused a diagnosis of fibromyalgia for many years because I thought it would just make matters worse. I have a mixed bag -- I'm nickeled and dimed to death by migraine, an old back injury, CFS/fibro, and other issues. I bulled through it all for over 20 years until I had to retire on disability a couple of years ago.
See, medical professionals hate to say 'I don't know' and they aren't paid if they refer you to someone else under an HMO/PPO or other such managed care nonsense; they'd rather tell you that you're 'nuts' than go after the real source of the pain. There's a really interesting article in this month's 'Reader's Digest' (of all places) that has a bunch of things that patients are seldom told, and that's one of them.
Also, being in pain all the time IS stressful, and stress CAN have an effect on pain. A psychologist/psychiatrist can be a very valuable part of the treatment team, especially if you're depressed, and there are medications that can help with chronic pain and depression at the same time.
Remember that YOU are the consumer, and YOU are the only one who's in there and knows how YOU feel. If your physician brushes you off, it's time to find another who will treat the whole YOU, and that may take some time. You need to interview them if possible, even if that means booking an appointment and going through the rigmarole of changing primary doctors. Find pain specialists in your area that take your insurance and ask your doctor if they'd be willing to refer you. YOU have to be in charge of this, no one will do it for you, unfortunately. Sometimes insurances will have nurses to talk to on the phone, and you can ask them questions, but it's often a money-saving, 'gate-keeping' ploy.
It's hard, and I was helped by the fact that I used to be a case manager in the past. However, assertiveness is needed, and I'm sure you can do it. Talk with friends or find a support group in your area to give you the oomph you need -- I also understand the enormous energy drain of chronic pain, and the temptation to just give up and suffer in silence because that's what's the least trouble. Don't. This affects everything in your life, and you deserve better.
I understand beaurocrtatic BS and why Doc's hate to prescribe opiods or other schedule 2 drugs...they could get there liscense pulled because of the restrictions that the DEA put on Docters. Phyicians are only allowed to prescribe a certain amount of these drugs to a patient. If they go over that amount the Drug Enforcement Agency comes down on them, and possibly ruin the doctors career. The DEA keeps a magnifying glass on any Doctor prescribing controlled substances. It's not that your doctor doesn't want help relieve patients who are in chronic pain. They just can't or else. I am talking to my primary HMO doctor about getting into a pain management clinic. I have severe pain in both rotator cuffs and my other joints hurt so bad that I can't function to my full capacity. I, too, have been treated badly because I am bipolar anyhow, so they just say I'm crazy and give me some crappy SSRI that does nothing.
Dear, my answer is simple: Oh my gosh, YES... HOLY #%$!, YES!!! Thats why we are fighting very hard for the passage of The National Pain Care Policy Act. Because we seriously need to re-educate DOCTORS on the facts about P A I N. DId you know that the average veterinarian gets over 90 hours of training on pain care/management issues and the average MD? 12 hours. NO KIDDING!! 12 blinking hours on how to arrest pain and why a doctor would even bother to do so. I have a mobility dog and God bless him, his doctor knows more about my pain than MINE does! (That is theoretical, of course -- my family doctor believed me and grew in knowledge as I did plus I have a dynamite intractable pain SPECIALIST -- so I am uniquely blessed.
Unfortunately what you say is oh So very common. Except for the two doctors of mine I mentioned, the rest seem to spit up either "I don't SEE anything that is that bad. Have you seen a psychologist?" ( I was injured in a plane accident, so "StupiDocs" as I call them think my pain is from the stress of the incident rather than being plunged toward the ground at 400 mph.) So yes, it is a very common thing.
But there is hope. What I did (and I suggest you do) is keep a PAIN journal for one week. Keep the notebook with you and every pain you get, don't just write down but analyze it so you can describe it. For instance, instead of say "pain in my leg", really concentrate and figure out what kind of pain - is it burning? or throbbing? Does it have a squeezing pressure like a molar gone bad? or does it feel like the Roadrunner stuck rocket-powered ice skates on and is ripping down the back of your leg with a deep stream of electricity?
The next thing is a more well defined "where?" Does that Roadrunner bastage' go from behind your knee to your middle right toe, or does he come down all the way from a cheek and down to your ankle in circuits that don't seem to end? All of these different characteristics in pain mean different things about what exactly is damaged and how badly and most doctors have a set script of a few questions they ask and then leave the rest... not because they're bad necessarily. They've just been trained that way to have a BASIC knowledge of all the big conditions. Only specialists, well, specialize in different fields and the descriptions you can come up with for the pain will determine which specialists can help you.
I am an intractable pain patient, which means that my pain has become a disease all by itself, very much like Diabetes. And like Diabetes, it takes a medicine regimen to manage it. I have a spinal cord injury with Cardiac Adrenal Pain Syndrome, Adhesive Arachnoiditis with Central Pain and systemic CRPS (both can be inherent with Arachnoiditis). Sounds like a barrel full of fun, huh? And I am Opioid tolerant from being under-medicated for years with just enough opioids ( I had Tylenol #3 & #4 for years) to keep me from finding the nearest railroad tracks. BUT (and it's a big ‘BUT) you can still not only have relief with them, but start regaining a life. You just have to have a large enough dose to be therapeutic. I'm on what's called "High Dose Opioid Therapy" which took about two years of titrating to get the right amount of relief versus side effects (which on me is ONLY - oh yeah, I said ONLY a manageable constipation). Contrary to what opioiphobic doctors said -and will say to you as well - I have been on this regimen for 3 years and I have NOT had to continue to go up and up until I have nowhere to turn. Not one bit! The pain will never be completely gone, but it is MANAGED; SO much so that I am slowly getting a life back. I never thought that was possible. When you have actual pain, opioids go strait to fixing the pain and NOT to "getting you high". IF you go to www.pain-topics.org, there is info explaining the concept better (from my doctor, actually.) It's called "THE INTRACTABLE PAIN PATIENTS HANDBOOK FOR SURVIVAL." It's a .PDF document and even though your pain isn't defined yet, it's great at explaining the whole opioid thing out loud and also about talking to your doctors for help.
I'm sorry I rambled. But I'm so passionate about people getting the help they need. I hope this does at least a part of that. Have a great rest of your day and may Creator bless you so very much!
I am learning to fight back, I have gotten a new DR, and finally an appointment with neureology! the new DOC is changing my pain meds, because the tramadol is useless.
I am so tired and hurt so much most of the time it's hard to fight, but I'm doing it.
Prior to this I had a Rehumetologist tell me he couldn't help me, they sent me to a shrink, and my personal favorite to date, My Dr's are through the University of California, and their pain management clinics refuse to see fibromyalgia patients...I was dumbfounded. The symptoms finally got so bad I had to stop my carrer, and go on disability, after 9 years. I told my last Dr that as I am getting older the symptoms are getting worse, and he told me that was impossible, because FM is not a progressive disease, it's just that my pain tolerence was getting lower, if I hadn't hurt so much I would have knocked his teeth out. I'm just praying this new Dr will stick with me until we find out what is really wrong and a way to treat it, so I can have some kind of a life, not just a painful existence.
If you've been checked out by a mental health professional and they don't find a psychological reason for your pain, and your PCP still ignores your requests for help, it's time to find a new doctor. You don't say what kind of pain you have. I have Fibromyalgia (among other ailments) and I had to wade through a lot of doctors that didn't know much about it before I found one that would help me. You have to remember that you are hiring doctors to handle your health care. They work for you. Keep looking til you find someone that takes your pain seriously. You'll find a good one but it takes time. I take pain medicine but if you're having a problem tolerating these medicines you might try asking your doctor about a TENS unit. I get a little relief from it but I know of people that it helps a lot. I also have a heat and massage lounge chair. They cost about $200 and I'm already looking for a new one. Mine is several years old and when it quits working I'll need another one.
Jenni
See? Lots of reasons. There are many non-drug alternatives for treating chronic pain -- my fibromyalgia doesn't respond to medication very well (we learned the hard way, after me getting on so much Fentanyl that I was a walking zombie), so I use acupuncture, self hypnosis, meditation, mild exercise (when I can), and NLP (sssh, don't tell anyone) for it. Physical therapy and trigger point injections are also useful. My back pain (sciatica and other goodies of the sort) DOES respond to medication, but I have to be very careful. I've had a lot of success with epidural injections and facet injections, which seem to last for a long time and make me semi functional.
I have had to decide the point where I can endure the pain -- unless there's a miracle surgery or drug out there that I have not discovered, I doubt if I will ever be really pain-free. If something brings me from a subjective 8/10 to a 4 or 5/10, I'm usually okay with it... it's the difference between whimpering and being able to get a distance from the pain and manage it with the tools mentioned above. I'm far from at a comfortable point -- I've had to fire a couple of doctors, and a few have fired me. Guess I'm too outspoken and a lousy patient because I demand care... and sometimes am in too much pain to make every appointment. Folks are right. If your PCP is ignoring you and genteely calling you a malingerer or worse, you need a new doctor. All the best.
I have had the injections, do the meditation, and have tried accupuncture, it helped but for a very short time.
They are moving me to vicodin, even though I've told them it has caused me allot of stomach problems in the past, like keeping it down. They tell me I have to "train my body" to accept it, which takes me back to it's all in my head that it makes me sick. if it does I am going to take one, walk into the office and throw it up, just to say I told you so and while I train my body, I guess I just suffer and wait it out. I am in full agreement, I would have better luck with my dogs vet, at least he is compassionate, and cares.
WAH!! wow, I'm glad the injections have worked for you but please be careful. ** and really,I mean no disrecpect at ALL **but please be careful. In the days when worker's comp would only do "treatments" on me to make this better, I had the injections -- only the first one worked for 5 days then BAD, VERY BAD. the other 12 sisn't help either and are the main reason I have Adhesive Arachnoiditis, which is one of only 5 ways you can get this insipid disease. In fact, over half the people in my Arach support group GOT theirs from ESI's (Epidural Steroid Injections) And if your pain is bad now,You DON'T want Arachnoiditis in it's stage 2 or stage 3 phase. When the Causalgia starts kicking in from the nerves being suished and stuck into the outside walls, the pain is up there with CRPS/RSD as being than terminal cancer. Y o u-d o n' t-w a n t-t h a t--!
Gia4me, though our culture has been taught "anything but opioids" is good, that is not the fact. I'm so glad that our fellow pain patient above gets relief because for a few people, that is a treatment that works well. Unfortunately its very few. In a medical journal just this year (I think it was the Lancet) a 50 year review was done on the efficacy of ESI's in relation to pain relief and all over help and found that ESI's have done much more harm than good.
I have a friend in France who also uses self-hypnosis, biofeedback, and some other alternative method to help with her Arach pain as she is allergic to all other medicines. They work very well for her. So I think it's up to what works with all the unique and different ways we and our pain are made up.
No. New doctor time for sure. "Training your body" to accept something it doesn't want to makes about as much sense as training it to accept arsenic or any other poison, fer pete's sake! He's trying to make YOU the problem because you've got a challenging problem to treat. Human nature, I suppose, but it is NOT acceptable. Remember, YOU are the one in charge. It may mean driving a few more miles, doing a little homework, or even calling a half dozen doctors, but you can do this and get the treatment you need. Please do this, for yourself and your family.
Hey, Worker's Comp got me where I am today by refusing to believe that I had continuing, debilitating pain after a back injury over 20 years ago. I've been through a lot of therapies, and I'm doing what's working now. I'm aware of studies that link the epidurals to more serious pain syndromes, but that's in a small minority of cases -- seemingly, you're one of them, and I wish you all the best for relief from what must surely be a nightmare. I use these treatments as sparingly as I can tolerate, but I have twin teenagers and a husband, and I'd like to keep them. My house already looks like a disaster area, and my son is bipolar and has other issues that keep him in a special school. We're hoping to start mainstreaming him this year.
I appreciate your concern very much, and will look out for side effects and adverse symptoms carefully, but I have to do what will benefit my family when I can. Fibromyalgia can't be treated that way, it's just THERE, and that's where I get relief from acupuncture and self hypnosis. Seems to help with the back pain/sciatica, too, to an extent -- and the TENS can really help as well. I'm just doing what I can, as we all do, to keep everything together. I have a great family, and I don't want to lose it.
You're ABSOLUTELY doing it BRKyle! I commend you completely. Look, you have a house and a family and you're still here giving advice to others' who are hurting - ROCK ON! You children have a really great example in you. ESPECIALLY since they've been seeing you deal with it for so long.
Speaking of that -- you had a Worker's Comp injury as well? SO no wonder you know what cochroaches they are. Do they believe anyone? Oh yes, I forgot.. somehow they believe those who defraud the system and give them settlements in 6 months time, that's all. ARGH! the so & so's. I'm so sorry you had to go through that.
Thank you for letting me vent about my ESI experience and understanding that I just hate to see anyone else there. But please know you are amazing and we are a better community here by having overcomers like you.
You flatter me. There are days like today, when I hurt like hell and I'm foggy from the fibromyalgia, that I don't FEEL much like an overcomer, I just feel overcome. Then I'm glad my kids are old enough to feed themselves and help me out a little. I've been through many docs and a lot of baloney to get even where I am, and now I need another pain specialist and neurologist (for migraine), because I fired one and another fired me... see, I won't drive on heavy medication or with a blinding headache, and I broke an appointment too many.
But, if I have the tools to do this, I'm sure anyone can after martialling their resources. It may seem like military logistics (sort of like taking infant twins out for a stroller ride), but even in a low energy state, you can still make a phone call or two in a day, or troll the Internet site of your insurance for new PCPs in your area, or seek a site like this for support and encouragement. I think the secret is managing the oomph you have and using it to the best effect.
I have the support of a great husband and kids; I know how fortunate I am. I see so many posts about EX husbands and such, and it makes me want to weep. Where did 'in sickness and in health' go? Or does that apply only to a wife, or only when it's convenient? That's another rant, but I do know that if I didn't have my family I would be a statistic now instead of a slugger. I do what I do to keep my family safe and together, to care for my husband and children who need my help and support, and incidentally for me, too. Might be a bit turned around, but that's the truth.
I am just starting the vicodin today, maybe that will help, I hope so but I don't count on it. Not much they have done until now has worked.
I get allot of help from my kids, thank God, but they both work full time so I have to set appointments around their schedule. I won't drive at all any more, after having that event where I totally lost my sight for about 10 minutes. No one seems to know why for sure, the opthamoligist is still working on that one.
My husband was my rock, and my support group, but I lost him to cancer 3 years ago, so now it's just pusing on with my kids and my grandson.. I'm sure everyone of us have days like I'm having today when you wake to pain, and are sorry you woke up at all, it's like it just isn't worth the fight anymore. It's great to have you guys to talk to, because no one else (including the Dr's get it) they have no idea the kind of hell we live in. I would love to be able to put one of them in my body for a day, and then see what they have to say.
My condolences, Gia. I know it's hard, but it's worth it to take care of yourself, even if it's for their sake, and the sake of others -- and YOU deserve it. Keep going, find another doc, and another, and another, until someone listens and is willing to go the whole route with you. You are worth it, and you deserve the care you so obviously need, not a pat on the head and a pill that makes you sick. Our hopes and prayers are with you, and I know that your children want you to feel better, to be well. Take care, and let us know how it goes.
Biofeedback and therapudic massages worked to some degree. However, it took visits to several doctors/clinics, until I found one who was able to give me the correct diagnosis, an autoimmune disease, in 1982, and later on Fibromyalgia, in 1998. My ex-husband (in the Air Force at the time in 1979) refused to allow doctors to admit me to the hospital for further tests. He would only sign for biofeedback and out-patient treatments. As mentioned biofeedback and therapudic massages help some and (if I had continued) may have worked better. However, my ex-husband and his family said my illness was "all in my head" and that I only wanted to be admitted to the hospital so I could avoid daily chores on the farm. A few weeks later I gathered my courage and two children, and drove across country to family in the East and began a 2-year search before I was finally diagnosed. A warm bath or shower, followed by mild stretching exercises is how I start my days now. Water aerobics help, too. Now, the autoimmune disease was related to the onset of Diabetes and this was pinpointed by a doctor just three months ago. I was diagnosed with Type 1.5 Diabetes in October, 2005. The body knows when its sick...it's people and medical professionals who have to work to understand it, and often the afflicted ones (like you and me) have to suffer and wait on a diagnosis that makes sense. As for medications, I have tried various ones. All of them have side effects and can be mild or severe. Perhaps if you go to an Internist or Endocronologist and get a complete workup, you may find a diagnosis that relates to your pain. Then appropriate treatment can begin for you, too.
GODS -- you've been through it. I'm lucky on my end, they try to diagnose lupus but I don't seem to be cooperating on that score, thank heaven. But I agree, you have to be careful and know what YOUR body can handle. Unfortunately, no one can know what you do, and you have to find someone who will listen. If it's a new doctor, so be it. Best of luck.
I struggled for YEARS with severe pain and disability and was repeatedly told by doctors it was just stress or depression; that it was just in my head. I was refered to mental health and they sent me back to my primary care doctor and said they felt strongly my pain was a physical issue. The mental health doctors recommended my primary doctor refer me to a neurologist. The first neurologist I saw wrote me off as a mental case and did not properly diagnose my condition. I began to wonder if my pain was all in my head. I wondered if I was a mental case!
In frustration. I went to another neurologist who diagnosed me at my first visit with a life threatening brain malformation! I had in neurosurgery ten days later! It saved my life! I am left with permanent nerve damage from the years of being blown off as a mental case and the years of misdiagnosis by the first neurologist. I have to live with this horrifying lack of caring by these doctors who failed to help me. I have been left permanently disabled due to the delay in a proper diagnosis and treatment.
If a doctor is too lazy, incompetent, uncaring or ego disturbed to take your concerns seriously, go to another doctor! Keep trying until you find the one who takes your symptoms seriously; the one who does not pull out the "it's probably mental" because he does not know how to diagnose you and does not care to try. It is your life and you have to be an advocate for yourself! Sad but true, modern medicine is sadly lacking in patient care despite the many advances in medical technology.
Wow. See, this is why we're all telling you to go to another doctor, and as many as needed! If this bleeping pill roller isn't doing the job, go to one who will. You may have something that he doesn't see and understand that is VERY serious indeed, and needs specialized care.
And for you, good on ya for keeping on. I'm sure it was a nightmare that seemed like it would never end, and I'm glad that you were in there and not willing to settle for being called nuts, in any language. Sometimes you just have to get up on your hind legs and holler that you've had e freaking NOUGH, and move! Blessings to you both, and hopefully things turn out all right when you get what you need.
Thank God someone finally listened to you. About 3 months ago I was walking down the hall and lost my vision, went totally blind, then thank the lord my vision came back slowly, it has left some vision loss in my left eye.
While everyone was sweeping this fibro crap down my throat, I ended up having a stroke in my left eye, but atleast I can see. I didn't honestly know you could have a stroke in my eye. But at least at least with the help of a great Opthamologist, I suddenly got a new primary care, but the neurology appointment I had been asking for for over a year. I guess I finally had a symptom they couldn't sweep under the fibro rug. But even with that, they change the pain meds and keep telling me everything else is from the fibro.
I am going to keep screaming until someone listens. I have a 34 year old daughter, and I am starting to see her go through allot of the things I did when I was her age. I haven't said anything to her, but it is scaring the hell out of me that she could end up like this someday. Somewhere, somehow we have to get the message across that fibro is real, but we can also get other illnesses just like every one else.
Georgette
Have you been worked up for MS? Yes, you can have a stroke in your eye, but a bleed like that can be associated with diabetes as well. Have they bothered with a Hgb A1C? Gods! I'd sue the bejeezus out of this so-called medical practicioner. Keep yelling. Keep looking for another doctor. Go to the emergency room if you need to, find an internist as a PCP. See an endocrinologist. This is ri freaking DICULOUS!
We are thinking about you, and please do all that you can to get the care you need before something even MORE serious happens!
Hi Gia! I have RSD, Fibromyalga, Cervical Dystonia and terrible Migraines. When trying to find pain management I was told the same thing. I though, did not stop till I found a doctor who would really listen to me and help me. Its been seven years since I was attacked and diagnosed with RSD. I have tried about every med out there. I have been on Zydone and Nortryptline for that long and it does not help all the time but it helps me function in society. I am worried about my liver due to the acitimenphine (sp) sorry.. but I KNOW i COULD NOT LIVE WITHOUT IT. i HAVE ALSO LEARNED THAT ANY TYPE OF EXERCISE IS NOT ONLY GOOD FOR YOUR BODY BUT ALSO FOR YOUR MIND. yOU MUST KEEP AT IT TRYING TO FIND THE RIGHT DOCTOR FOR YOU. I KNOW HOW FRUSTRATING IT CAN BE HITTING DEAD ENDS, BUT PERCIEVERE GIA, AND YOU WILL FIND THE HELP YOU NEED. I WISH YOU WELL GIA, BELEIVE IN YOURSELF AND THAT THERE IS HELP OUT THERE FOR YOU.
DONNA
I know there are answers out there, I just have to find them, they have changed my pain meds, but they don't help allot. So I take allot of Tylenol as well.
After the incident of losing my eye sight for 10 minutes I swore I would live with any kind of pain, as long as I never go blind, even for a little while.
The one thing it did teach me is no matter how bad things are they can actually get worse.I'm just hoping that the neuroligist can shed some light on this, because just because I have FM, doesn't mean something isn't wrong.
Thanks for the kind words and I'll be trying just like you
Gia
Hi Gia. I am interested in what you said about losing your eye sight for 10 min... I have had similair experiences and dr thought I had stroke i have had this happen three times with each occurence going to er to be told, after every test you could imagine..I was fine and drs think it is a focal migraine??,,did you suffer confusion ? I did and didnt even know my name for about an hour..I am kind of scared sometimes to drive because of this. Do you experience any other symptoms..hope to hear from you and pray you are well today! Oh please be careful with the tylenol hon.. how much do you take and what other meds are you on??
Donna
Hi Donna,
So far I have only had it happen once, but I don't drive any more because my eyes have trouble adjustiing to changes in light, so if I go from sunny to a shady street thoes extra few minutes could hurt someone, and I don' think I could handle that. It's a real pain, but I think it's safer.
My Opthomoligist is sure I had a stroke in that eye, but it won't show up on the CT scan, so like you, I sit and wonder if it's going to happen again.
Right now I am taking Cymbalta, Lamital (who knows why), amitripiline, provigil, and Vicodin. They had me on ultratram,, but my Dr was afraid it could cause seizures. I did try Lyrica, but it did nothing.
I know some of the meds are for depression, but my point is who wouldnt be drepressed if you feel like we do?
My biggest fear is losing my sight and not getting it back. When my sight came back I was sick to my stomach, cold, clamy, and like looking through a fog for atleast an hour before it came back. I know it did vision damage, because I had just gotten new glasses, and had been thrilled how much better I could see, and after this (only 2 months) it's like wearing my old glasses again.
If you find anything out about this let me know, and I will do the same for your, there has to be an answer other than we are losing are minds.
Gia
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hi well i know how you feel i went thru years of pain and wanting it gone.. while doctor's didn't believe me. i did not give up and proved to them that they were wrong and i was right.. my neighbor would help me out with the pain thing.. but i just now proved everyone wrong cause now i found out after the mri. i have a hernated disk in my spine and my neck.. i went thru years of pain because of that and like the doctor said if i had went one more year it could have parlized me. badly.. If you need to take more test to prove them wrong.. cause its not in anybody's head.. if there is pain then there is something wrong...