Women’s Pain News
March 27, 2008 by Tracee Sioux
Filed under Parenting
Ever read news and go, “Well, duh. It took them long enough to get there?” I recently had a conversation with Jeanne Connor Dessert. She’s struggled with endometriosis.
Endometriosis is a painful, chronic disease that affects 5.5 million women and girls in the USA and Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (called the endometrium) is found outside the uterus.This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissueof the uterinelining does:each month the tissue builds up, breaks down, and sheds. Menstrualbloodflows from the uterus and out of the body through the vagina, but the bloodand tissue shed from endometrial growths has no way of leaving the body.This results in internal bleeding,breakdown of the blood and tissue fromthe lesions, and inflammation — and can cause pain,infertility, scar tissue formation, adhesions, and bowel problems.
Obviously this is terrible to undergo. But, what is really upsetting to Jeanne and others in her support group is the way their pain has been dismissed by the medical community because it is of a feminine nature. Many go decades having their condition undiagnosed because their pain is completely dismissed by doctors. I hear similar stories from women about predominantly female pain diseases like fibromyalgia.
Oh, I totally get that. During my first birth when my entire labia was severed and required about 25 stitches it was excruciating and I had to literally throw a temper tantrum before my OB/GYN would give me pain medication. “I can only give you 15,” she said. I felt I would have gotten more sympathy,empathy, compassion and medicine had I severed my finger. When the intern ripped through the stitches (to figure out why I had pain – uh, I just pushed a human through my vagina and my labia had to be reattached) there was no “fix” available and I was told I’d have to wait until the next baby to repair my mangled labia. And as the second OB/GYN ripped 25 more stitches out of my most tenderest skin without pain medication or a local anesthetic after my second and last child, I thought, “Why do they allow psychotic sadists to become obstetricians?”
As I could barely sit with my poor pained pudenda, my husband went in for a vasectomy. I noticed a huge discrepancy within the medical community when compared to men getting vasectomies. He was given a valium, a local anesthetic both during the procedure and the removal of stitches and a big bottle of refillable pain medication. Not to mention my undying gratitude for permanently preventing my vajayjay more heinous pain. They even gave him porn to make the semen testing process enjoyable.
Why?
According to an article, Women, Men and Ouch! the Painful Truth by Cathleen Medwick in O Magazine there is a very real difference in how the medical community perceives pain and treats it in women versus men.
In other words, this is not just a hysterical perception of mine and Jeanne’s this is a documented fact. Medwick talks about how difficult it was for her mother, who was dying of breast cancer, to get her pain treated or even garner any sympathy for it.
Medwick interviewed pain guru Jeffrey Mogil, PhD, director of the pain genetics laboratory at McGill University in Montreal. Mogil has apparently done something unheard of and revolutionary – he includes females in his pain studies.
That’s right. The scientific community has traditionally excluded women under the erroneous assumption that “females show too much variability in their responses due to hormonal cycling,” according to the article.
Mogil is revolutionary because he noticed that women made up the vast majority of clinical pain patients. And so he thought to study them. (Am I the only one screaming, It’s 2008, what the hell took you so long? That’s a nose on your face.)
In his research he has discovered that women and men have a different genetic makeup and they experience pain differently. He believes, according to the article, that there are actually different neural circuits for men and women. He says this means that treating women with pain medication which is effective for men is not going to treat women’s pain adequately. Visa versa.
Since most research excludes women, he believes, that’s resulted in inadequately treating women’s pain by using medications that were made for men. He also says women have a documented lower pain threshold. Saying that not only are women more likely to report pain, but we experience it as more painful. Other species do too, he says, citing female rats that flinch more than male rats responding to the same stimulus.It has recently been shown that estrogen influences pain sensitivity. Male rats given the hormone flinched in more pain than they did without the hormone. Testosterone, when injected in the female rat, reduced the response to pain.
Women feel pain more acutely and yet:
Women are still twice as likely as men to be under-treated for pain.
This makes me sick. But I was completely unaware of it.
Tracee – that sucks that you had to go through that.
Can you believe they haven’t been using females in their studies? They’ve excluded HALF the population because we get periods making us unreliable witnesses.
Apparently this is “tradition” in all medical research – not just pain.
I don’t see how the findings of any studies or tests could be valid if they’ve only used half of the population..
I’m just floored by this. If medications haven’t been okayed for children – they aren’t prescribed to children – WHY THE HELL would I be prescribed medicine that had never been tested on my gender??!! And with women experiencing signifigant pain once a month and horrific pain however many times they give birth – WHY THE HELL would they NOT do studies specifically for us?! Hell, they’re not even INCLUDING us in the studies that they are doing!! This makes me furious!
Man..it makes my body hurt just THINKING of what you went through! I’m so sorry. And why in the world would a OB/GYN give you stitches they had to take out?! I know the only ones I had dissolved so you didn’t have to go and have them taken out, they just faded away by themselves.
After the birth of my 2nd child in 96, at my 6 week check up, it was found that I had cervical cancer that was undiagnosed at the time of my pregnancy. I went through every biopsy, conization, surgery and flesh-burning-off treatment they could think of, until a light bulb went off in my drs head (after many times of me suggesting this)…I needed a hysterectomy. I was 26. I was also in excruciating pain. What was I given? Paxil and Ativan (not even Xanax) because I “was going to go into deep depression due to the fact that I will not be able to have anymore children and go into menopause at such an early age”. OH-KAY!! I already had 2 girls that I wanted to LIVE for and be as pain free as I could to be able to take care of them as best I could while enduring this blow my body had taken. Fast forward 11 years and the big “C” is back. Nothing much has changed. I have to practically beg without coming across as a drug addict for pain meds. Thats what really pisses me off. If I was an addict, I could walk into any old drs office in town and be handed a goodie bag with a plethora of drugs. I have also gone through the fibromyalgia, again very few drugs, I endured painful injections into my shoulder blade and was told a fantastic green liquid concoction that smelled and tasted like, (well, it’s too early for that description, but you can imagine) would take away all my pain. And as a chaser to this wonderful cocktail, again, wait for it, another anti-depressant. Hey doc, Im NOT depressed. I am in PAIN. Walking across hot coals then through broken glass and being hit by a car PAIN. I could, however, get depressed because you will not give me any pain medication. And let the side effects of the antidepressant make me manic and then who knows what I would do at my next visit and your nurse looks at me like I am an addict looking for my next fix……..At least they are nice to me over at Chemo. Everything is so frilly and beautiful in my room and they even ASK me when I leave, what do you need for PAIN???
mine too Tarah.
The Dr. did put the disolving stitches in but my entire labia was stitched which was very, very painful – at every move they would pull.
He didn’t want to give me pain medication. So he figured he’d just pull out some of the stitches to “relieve some discomfort.”
I asked specifically for at least a topical pain cream, but he refused. He also refused giving me pain medication or a valium.
After about 5 stitch removals he couldn’t take the screaming and crying and suggested I take a lot of baths to dissolve the stitches quicker.
But, alas I’m a huge baby. My pain is over and it was relatively brief compared to fibromyalgia patients and cancer patients and endometriosis patients who are literally DYING of pain and then treated like addicts for asking for relief.
Spoiledmom – that sounds horrible.. But your description is really funny and witty.
Why are they giving you antidepressants when you don’t want them?
Okay, this seems so wrong to me.. My husband was a pain killer addict for number of years (thankfully ending in 06) and he could walk into any ER, Doc’s office or clinic and fake something – kidney stone, tooth ache, etc. and walk out with ridiculously strong medication. At the time I started feeling like our medical professionals are being way, way too giving w/ the pain meds if they give out tylox now for a tooth ache, but now I hear THIS!? The kind of meds they were prescribing him was what I would have thought would have been doled out to actual cancer patients – and now I hear that actual cancer patients (the female kind) don’t even get what my husband was getting for a freakin fake kidney stone!? What is going on here?
Because want to believe she’s hysterical and depressed instead of in pain. It’s easier to treat depression because the side effects and long term effects are “unknown” versus ‘known risk of addiction.”
They think making a pain medication addict out of her would be worse than giving her pain medication to relieve pain. Which is S-T-U-P-I-D.
Spoiled Mom I feel for you. What you are going through is Terrible. I’m so sorry.
Tracee and Ashley:
Thanks so much for your sweet words!
Tracee: you hit the nail on the head with that post re: antidepressants instead of pain killers. A lot of drs now prescribe them for “pain”. They think it is all in our heads…my opinion. The drug companies “push” them this way to the drs. (treating w/AD instead of narcotic)
I do remember my grandmother had died a few months before I had that initial visit and he seemed to think that I was depressed because of that. I do not think depression makes your insides feel like they are falling out or that you bleed constantly. I was doubling up maxi pads (one on top of the other)…..yes that sounds depressing to me…LOL
Ashley: Thank you again and sorry to hear about your husband and glad he is in recovery. See my other post on Tracee’s blog “The Feminine Mistake”. My husband had some ailment all the time. When I had my hysterectomy, he told my dr I couldn’t take what they were sending me home with b/c my tolerance was high, so they gave me something stronger (I didn’t know he did this) He ended up taking everything I had. I even hid them and he found them.
My humor and my girls keep me going. If I didn’t laugh I would cry and have to redo my make-up. LOL
If they don’t test pain meds on women and women do experience pain meds differently, as this Mogul says, lots of drs likely think “this amount works on my male patients, it it’s not working for her it’s probably about an addiction issue.”
When in reality they are treating women’s bodies with meds designed for men. And they are discovering they aren’t effective.
Tracee: I am so sorry for your labia, girl. Honestly, that had to be horrible. Pain is pain no matter what is causing it.
That Dr has no clue. Put a few stitches in his penis and pull them out and tell him to take a “sitz bath”….he would cry like a little girl.
Come on over, we’ll have a cosmo and a valium..(for our labias) LOL
LOL – SpoiledMom
Hi! I’m Jeanne and I have facilitated an endometriosis support group for over 6 years. I’m 39 years old and my endometriosis symptoms began at age 13. I was not properly diagnosed, however, until the age of 23. March is endometriosis awareness month. I would like to make all parents of girls out there aware that endometriosis is a serious illness and that symptoms should not be overlooked, marginalized, or viewed as “in a girl’s head”. Endometriosis is a very real illness that affects an estimated 80 million patients worldwide. Society has taught women and girls that menstrual pain is “normal”. It is not. Endo has a wide variety of symptoms. Cramps are just one of a great many. See http://www.endometriosisassn.org/ under “what is it?” for a complete list of symptoms. The important point I’d like to make is that if you think there’s any chance your daughter is having endo symptoms… I urge you to take it seriously, have her seen by a highly skilled gynecologist WHO IS HIGHLY TRAINED IN RECOGNIZING AND SURGICALLY REMOVING ENDOMETRIOSIS, and advocate for your daughter. This illness can cause pain (sometimes debilitatating and disabling), infertility, less commonly it can cause bowel obstruction… The list goes on. Endo patients are also at an increased risk for ovarian cancer, melanoma, and breast cancer. If you have endo in your family (which some people do have family history without even knowing it due to societal “taboos” regarding talking about reproductive organs and menstruation), then your daughter has a higher risk of developing endo. I urge parents to learn the basics about endo. If your daughter has it, you want to be proactive, have her see a properly qualified gynecologist, and not ignore her symptoms. Many gynecologists THINK they are properly trained to treat endo but, sadly, are mistaken. Endo is diagnosed by an outpatient surgical procedure called laparoscopy. There are doctors out there who perform laparoscopies on women and girls with endo but who are not properly skilled to be doing so. It is imperative that anyone undergoing a lap for suspected endo be operated on by a highly skilled, experienced surgeon. Most important, endo symptoms shouldn’t be ignored. While Traditional Western Medicine offers mainly drugs and surgery to treat endo, there are many highly beneficial alternative medicine treatment techniques available. While I certainly can’t advocate any particular treatment or practitioner, I can tell you that our support group members have found acupuncture, physical therapy for pelvic pain, homeopathy, Chi Nei Tsang, and massage therapy (to name just a few) very helpful. Unfortunately, there are times when surgical removal (in surgeries following the diagnosis by the initial surgery) of the abnormal tissue seems to be necessary with this stubborn disease. However, it should be noted that surgery can cause scar tissue/adhesions and surgery decisions must be made carefully. Endo is also associated with other illnesses. Fibromyalgia, interstitial cystitis, and irritable bowel syndrome are just a few illnesses correlated to endo in studies. My personal belief (based on my own experience and stories from my group members) is that the longer endo goes unchecked/undiagnosed, the greater the chances that the patient will develop “correlated illnesses”. There is no cure for endo (despite myths that hysterectomy is a cure for it). However, there are many treatment options available between alternative and Western Medicine. Please don’t allow your girls to suffer unnecessarily from this serious illness. Good resources are out there. Sometimes finding them just takes some legwork. Empower your girls to obtain appropriate health care and not be cast aside by a health care system that isn’t doing all it should for endo patients. Also, the research dollars for endo have historically been far too limited and I do not think this is an accident. Since this illness affects women and girls, the research dollars are just not as available for it as they would be for an illness affecting both genders.
Thanks for the info Jeanne. You inspire others to seek help.
So, let me get this straight..um, we’ve spent no telling how many millions studying, researching, developing drugs for, and marketing the drugs for the OH-SO serious condition of: Erectile Dysfunction; But we don’t really care about a painful, dangerous condition that effects women and girls..
Okay I’ve got it now..
Ashley,
I have heard there are some parts of the country where HMOs cover the erectile dysfunction meds you referenced but will not cover birth control pills. Birth control pills are used for treating illnesses – not just for birth control. Endometriosis is one of the illnesses that is sometimes treated with birth control pills. So even if you remove from the table any issues that anyone may have with HMOs paying for medication used for birth control, BCPs are still used as a medical treatment. Yet HMOs in some areas exclude their coverage the last I heard. In the early 1990s, when I was diagnosed with endometriosis, I used to have to pay 100% for my BCPs even though they were being used to treat endo (!) and they were not being used for the purpose of birth control. The irony is not lost on me. This is the way things are in 2008.
Jeanne
oh, yea, I’m voting for Hilary..
My husband’s vasectomy cost less in copays than one month of copays of the Birth Control Pill through our insurance plan. How’s that for equitable?
I have fibromyalgia and so many people act like I’m just crazy or it’s all in my head. Maybe it is, but all I know is I hurt – all over.
I know for years they studied heart disease on men only, never including women in the studies. Later, they found out that women had a completely different set of needs and reactions. I wonder how many other health problems are studied like that. Sigh. I hope more women go into medicine soon.
Violet,
In addition to having endo, I also have fibro. You are definitely not crazy, nor is it in your head! Unfortunately, our society has a nasty tendency to disbelieve or minimize “invisible illnesses”. I hurt all over too… so I understand what you’re talking about. You are right about heart disease being studied far earlier and more intensively on men than on women. It’s hard to comprehend that researchers have devoted so much more time, energy, and money on researching male patients than female patients… at least until you research it yourself, talk with other patients who have similar illnesses, etc. Once you become as cynical as I am, it’s no longer that surprising.
My perception is that progress is slowly being made on getting more research done with female patients. Unfortunately, The New York Times very recently published a front page devastating article that questioned whether fibromyalgia is a valid diagnostic condition! I wrote a blistering letter to the editor of the NYT about this article, which clearly had not been properly fact-checked. There was a huge letter-writing campaign by Fibromyalgia Network (and multiple other organizations) plus letters from numerous docs refuting the ridiculous statements made by the NYT “reporter” (I use that term very loosely). Sadly, articles like that one only hurt fibro patients. If you could have seen the flaming email I send the Times, you would probably flip. Not sure what kind of weather you have where you are but I know applying heat is my best friend for fibro pain. So maybe it could help you too. I have a heat pack (cotton material with flax seeds inside) that I can just heat in the microwave as needed. I don’t know what I would do without it.
Take care,
Jeanne
All,
The following link will be of interest for anyone suffering an “invisible illness” or who simply knows someone who does so. Once you click the link below, just click on “Spoon Theory”. My support group members have found this site very helpful.
http://www.butyoudontlooksick.com/the_spoon_theory/
Jeanne
The article specifically mentioned fibromyalgia pain sufferers because 90% of them are women so it’s extra-absurd to study treatments for this type of pain in males. Duh.
However, Mogul said he is very optimistic that he can treat women’s pain more effectively in the near future. The fact that Lyrica (the only medication designed to treat Fibro) has come on the market, it is believed, helps to legitimize the pain as valid and real, the article said.
I know my mother-in-law endures terrible pain with this condition. It does make it worse when no one can explain the pain, prescribes anti-depressants instead of pain treatment (which even though there is a connection between pain and depression, feels like they’re just calling you crazy), and no one has anything but a bunch of loose layman hypothesis (like drinking barley green, like unto puke) to treat the symptoms.
Jeanne, thanks for your kind words and the spoon theory. What a great way to explain! It makes me feel better just to know others are going through the same things I am. I guarantee that if this was primarily a male disease, there would be like 10 treatments for it already. I heart my heating pad, hot showers and massages
Tracee,
My daughter’s asthma is WAY better since starting acupuncture and she is on LESS medications now too! Acupuncture is amazing!!! My daughter is 7 years old and she LOVES acupuncture. She jumps up and down when we tell her “tomorrow is acupuncture”. It’s so empowering and helps so many illnesses!!! I’ve been getting it for 7 years. My acupuncturist has helped me more than all of my doctors/specialists (8 docs right now) put together. I have many chronic illnesses and I don’t now what I’d do without my acupuncturist. Honestly!
The O article you’ve mentioned sounds really interesting. Is there any chance you might have a link where the article can be read online? If not, do you know the month-year of publication so I can look for the article in old issues of O? I felt the same way (about Lyrica’s FDA approval and subsequent advertizing being helpful – so now the typical American has actually even heard of fibromyalgia). I’m not usually a fan of drug companies advertizing all over the airwaves (seperate topic) but this was one ad I was actually happy to see. That is one reason I was so disgusted by the NYT article on whether fibro is “real” and claiming that the company that makes Lyrica is only promoting it as a fibro treatment to make money. There is no doubt any drug company offering a treatment for an illness as widespread and painful as fibro will make money from it and no one is more cynical about drug companies’ motives than me BUT for the New York Times to question whether fibro exists (!!!) is preposterous, damaging, and irresponsible.
Here’s a link to the offensive NYT article on fibro that got me so fired up I spent about 2 hours writing to their editor: http://www.nytimes.com/2008/01/14/health/14pain.html?_r=2&sq=Monday%20Jan%2014,%202008&adxnnl=1&oref=slogin&scp=2&adxnnlx=1206807378-hfaxUzpC7tcsLEfIdf8YeA
The article is so absurd, so hurtful, and so destructive. While I am certainly no fan of overmedicating in any form or improperly medicating, and while I can CERTAINLY understand some women’s reticence about taking antidepressants to treat pain, I do know that antidepressants are used (even by ethical, honest, amazing doctors like my one pelvic pain specialist) to treat pain and are NOT prescribed at the same dose they would be prescribed to treat depression. Low dose (far lower than what is used for depression) antidepressants are used to treat various forms of chronic pain… including fibromyalgia. I’m NOT saying that I think this is the best option that should be available. I do know that until Lyrica got FDA approval, many docs viewed this (low dose antidepressants) as the only option for certain chronic pain. (Lyrica was already used off-label for treating chronic pain other than diabetic neuropathy before Lyrica got FDA approval for treating fibro. However, without FDA approval, HMOs won’t cover it. I know because my neurologist was going to give me Lyrica a couple years back… not for fibromyalgia but for my peripheral neuropathy. However, he gave me Neurontin instead because my HMO wouldn’t cover my type of neuropathy since it wasn’t brought in by diabetes! This was a drug that was already FDA approved for diabetic neuropathy!) My neuropathy, by the way, was brought on by a prescription! In any event, women clearly need better options to manage their pain, whether it be fibro pain or otherwise, than what is currently available. One reason the NYT article got me so FURIOUS (!!!) is that it questioned the very existence of fibro. A caveman article like this just takes women with fibro 30 steps backwards. It’s appalling the Times could pass this garbage off as “journalism”!!
Jeanne
P.S. Tracee, has your mother-in-law tried acupuncture? I HIGHLY recommend it. My acupuncturist uses very thin Japanese-style needles that DO NOT hurt. Acupuncture is awesome for SO many things, including fibromyalgia!!!
Violet,
Goodness knows I have seen the difference heat can make for the better with fibro!!! (The infrared light my acupuncturist uses on me is like heaven)! Once upon a time (when I could afford it) I was able to get regular massages (sniffle) and I know how helpful that is too. I wish you the best with your fibro. Just remember that YOU ARE NOT ALONE! Fibro is very common and I would search for a support group since there may be one in your area you just aren’t aware of. 
I’m glad you like The Spoon Theory. Everyone in my support group loves it. Someone in my group had initially brought it to my attention. It really is a great way to explain chronic illness to those who are healthy. It can be so hard to bridge that comunication gap and The Spoon Theory really helps. You are not alone. Illness can be very isolating and make people feel they are the only ones but there are load of other people out there with the same conditions or similar ones. If there is a fibro support group in your area, I would encorage you to check it out. Support groups can be enormously helpful. It is empowering to meet others with common challenges, share ideas, learn from each others’ sucesses, and simply feel supported/less isolated. Without a doubt, any illness affecting primarily women/girls gets less research money, attention, and quality care than “men’s illnesses” or illnesses affecting both genders. However, I have learned that if I sink into bitterness over this pitiful fact, it won’t help me or others. So I speak out when I can. If I see an appalling article that claims fibro is imaginary, I write to the New York Times to complain and express my outrage. If I see letter-writing campaigns that may help patients with one of my illnesses, I write letters, sign petitions, etc. I facilitate a support group for women with endometriosis because that particular illness started affecting me at age 13, I’m now 39, and I feel like I have something to “give back” to the endo patients of my community. (Goodness knows I learn plenty from my group members too)!!! I may be far too sick to work (employment wise) with my many chronic illnesses (I have many more I haven’t mentioned on this blog). However, I hope to never EVER be too sick to speak up when I see injustice. So I was absolutely thrilled when Tracee included the endometriosis topic on this blog because increasing awareness is one of many important steps I can take to help women/girls with endo. This blog helps in that effort. I’m glad you know the “power of heat”.
Jeanne
Thanks for the acupuncture tip.
My mother-in-law is one of the millions of uninsured Americans who are already sick. She’s a missionary and can’t afford many potentially good treatments for her fibro.
She is paying for the Lyrica and says she has noticed some relief.
I completely understand the financial aspect. I’m too sick to work and my husband is unemployed. Insurance doesn’t cover my acupuncture. I get it anyway because I have seen how powerfully it has worked for me for 7 years now. There have been times over the years that getting acupuncture meant dropping a prescription I was on… which I did because I determined acupuncture would give me more benefit. That is not to say that’s what right for your mother-in-law necessarily. I’m just giving an example from my personal experience. If she feels some relief from Lyrica and plans to stick with it, I would suggest that she beg her doctors for samples. Lyrica has been around awhile (before it was approved for fibro treatment). However, it’s still new enough that her doc may have samples. It doesn’t hurt to ask. I always get samples whenever I possibly can. Often the only way to get samples is to ASK the doctor.
I get the massages from my husband! I went and read that NYT article and it is maddening that people are calling us chronic complainers and the like. Sigh. I’m not surprised.
My mom was diagnosed with this a couple of years ago, and she said, “I can’t believe this is what you were going through all these years.” (I was diagnosed 18 years ago) She never said she doubted me during that time, but yeah, I could feel that she was skeptical that I was just being a hypochondriac and a crybaby. (Karma’s a bitch, huh?) And that was my own mother! I don’t tell most people I have this for that reason.
I do think stress, depression and lack of sleep exacerbate my condition. But then sometimes everything is going great, and I have a massive flare up anyway. I hurt every single day, but some days are worse than others. I’ve been going through this for so long that in some ways I just ignore it, work around it. If things are really bad or I have some big thing to get through, I’ll take a pain pill, but that is a rare occasion – like once every 3 months.
I work through the pain, because I have to and because I choose to. I won’t let this stop my life and the things I want to do. I do wish they’d figure it out and find the cure though.
Violet, you’re so smart for not relying on the pain pills daily. I know that’s probably hard but it’s awesome. And responsible.
What you’ve gone through sounds terrible. My boss has fibromyalgia and I never really understood what it was – and I definately didn’t know it wasn’t taken seriously. Everyone’s health, or lack of, should be taken seriously by the medical profession.
I suffer from fibro and have been relying on pain killers to get me through the day. I’ve tried amytriptalin, but it didn’t help. Can someone give me a good lead or helpful website that I could tap into to find out if there is anything new for pain management for fibro? Thanks, Kathryn
Kathryn,
Let me start by saying I saw your email the other day and wanted to respond sooner but I have been totally swamped. So I don’t want you to feel ignored.
Obviously I can’t give medical advice but I will share some info with you and you can do your own research so you can ensure you have the best possible health care team working for you and so you can truly advocate for yourself to get the care and relief you deserve.
I will have to (try to) be brief on this response since my sleep cycle is very messed up lately (gee, could it be my fibro, my sleep apnea, my anemia, my pain disrupting my sleep, my medications affecting my daytime drowsiness… hard to say!?).
Anyway, here is what I feel I can responsibly say in the most concise way for now. (Hopefully I’ll be able to get into more details in a future post).
1) As with almost any illness, every patient is different. What works great for one fibro patient might exacerbate symptoms in another.
2) You need health care practitioners you TRUST on your team… who truly believe in such a thing as fibro. If your docs don’t believe in it, the care you are given (or should I say the lack thereof) will be a direct connect to their lack of understanding the illness they are trying to treat! Some possible examples of potentially helpful team members might be: a massage therapist (particularly one with training in fibro); a rheumatologist; an acupuncturist; possibly a physical therapist… The list goes on. There are more and more resources out there all the time… as fibro is becoming more recognized. The awareness generated by the drug company ads has made most TV-watching American adults at least somewhat familiar with the word fibromyalgia.
3) Prescription meds may work great for some fibro patients but be disastrous for others. Many fibro patients are ultra-sensitive to chemicals, preservatives, fillers, allergens, and toxins that might fly under the radar for “apparently healthy” patients for now… but may come back to haunt them in later years. (I predict fibro rates will continue to rise). If you have fibro, odds are your body is more vulnerable than the average person’s to a wide variety of insults. What I’m trying to say is that a prescription might be perfectly helpful for you (that’s something to discuss w/your doctor/medical team)… OR it might not be helpful for YOUR particular body.
4) No doctor or human being can predict how a particular prescription will affect you for certain. Only you can decide what is right for your body based on the info you have at hand.
5) Some “old fashioned” techniques help many fibro patients. I have a friend w/fibro who swears by “castor oil packs’ applied topically, for example. Or heat packs can works wonders. For some, hot baths too.
6) You may respond to “alternative medicine” modalities such as homeopathy. (You’d want to find someone well-trained in this to help you choose the homeopathic remedies that would be appropriate for you).
7) You may need to curtail your activities a bit. You may be doing more than your body can handle. Perhaps backing off some tasks might give you some needed relief.
I could go on and on and on but you get the idea. There are many ways to approach an issue and identify potential solutions.
Let’s just say that you know your body best. If you notice a certain food/s aggravates your symptoms, try eliminating the suspicious foods for awhile. Try keeping a log of your symptoms, the weather that day, what you ate that day, what activities you did, etc. You may discover PATTERNS. Avoidance of triggers can really help!
My friend (fibro patient) has repeatedly injured herself vacuuming. Her physical therapist has advised her “no more vacuuming”. Every time she has a flare-up after vacuuming and she mentions it in conversation, I ask her… “WHY are you vacuuming? You’ve been down this road b/4″. Her response is that her (very supportive) husband wouldn’t vacuum things the way she likes it. My response to that was (not to be cold/I love my friend very dearly but don’t want her hurt)… “well, then maybe you’re going to have to choose between a less-than-perfectly-vacuumed-carpet” and being in agonizing pain.
My point is that there are MANY steps you can take in everyday life that can minimize the extreme flare-ups in severity, frequency, or both.
It’s challenging but there is hope!
So, I hope something in here is helpful to you. I’m sorry I can’t list off more details now (plenty more in my head since many of my support group members have fibro and tell me their experiences).
I need some sleep, though. It’s 12:05 am my time and I’m just touching the surface of scanning me inbox for new emails.
Please let me know if any one this info is helpful.
Jeanne