Results released from a national survey of U.S. women with fibromyalgia, illustrate the private and prolonged physical and emotional struggles patients with this condition face, underscored by delays in diagnosis, which a majority of respondents report as being one year or longer.
As a result of fibromyalgia, two thirds (67%) of respondents say they are unable to keep up with household chores, nearly half (47%) report that their work-life or career has been negatively affected, and two in five (42%) spend less quality time with their friends. Nearly one-third (31%) say fibromyalgia has negatively affected their ability to experience intimacy.
Fibromyalgia is a condition marked by chronic, widespread pain and tenderness, and decreased physical function. It affects six to 12 million Americans, mostly women, three-quarters of whom are estimated to be undiagnosed. Results of the 48-state, 508-person survey were released by sources the nation’s leading independent source of health information for women. The survey was sponsored by Forest Laboratories, Inc.
“Fibromyalgia is a common medical condition affecting women,” said Elizabeth Battaglino Cahill, Executive Director of HealthyWomen.org and a registered nurse. “It is estimated that there could be as many American women living with fibromyalgia as there are living with diabetes. And while increased awareness has dramatically improved care for patients with this condition, we still have a lot of work to do to ensure patients have the support they need to live their lives fully.”
Remarkably, one in four (23%) respondents report having suffered for at least five years before receiving a diagnosis for their condition. Most respondents (71%) say they waited until they could no longer tolerate their symptoms before seeking a diagnosis. Examples of perceived barriers to a proper diagnosis include patients’ own lack of knowledge about the condition and physicians not recognizing symptoms.
Although fibromyalgia is a chronic disorder, a majority of respondents say they fear skepticism about their condition, with 64% expressing concern about being taken seriously, and 79% indicating the top quality they seek in a healthcare professional is assurance that their condition is being taken seriously.
“This survey quantifies what patients and their supporters have known and experienced that stigma, skepticism, lack of knowledge about fibromyalgia, and delays in diagnosis contribute negatively to patient outcomes,” added Battaglino Cahill. “However, with more knowledge, patients are overcoming these barriers to improving their lives, and that is an important lesson we can take away from this survey.”
Respondents whose diagnosis was delayed were more likely to report severe symptoms (68%) at the time of diagnosis, compared to those who were diagnosed within a year (42%). Patients diagnosed within a year are also significantly less likely to experience daily challenges in the management of their households, relationships, and careers.
“An earlier diagnosis is important,” said David Edelberg, M.D., founder of WholeHealth Chicago and a physician specializing in fibromyalgia treatment. “The sooner patients are diagnosed, the sooner they can begin an effective management plan and get back to their daily activities. This is why it’s critical for both doctors and patients to communicate effectively and for patients to not wait until they can no longer bear their symptoms before seeking help.”
Since being treated, 51% of patients believe that their overall day-to-day life has improved. In addition, a greater number of patients who received more support from their spouse report that their day-to-day life has improved due to treatment (56%), compared to those who received the same amount of or less support (47%) since being treated.
Unfortunately, many patients do not receive the support from friends and loved ones that they need:
— Of the 43% of respondents who say they rely most often on their spouse or significant other for support, only about a quarter (27%) say this person fully understands how fibromyalgia affects them — After learning about their diagnosis, less than half of respondents say their friends (28%), children (33%), and spouses (43%) offered more support
“Arriving at an earlier and accurate diagnosis is only the first step for patients with fibromyalgia,” said Battaglino Cahill. “Women need to work closely with their physicians to find an effective treatment plan, and friends and loved ones must do their part to provide the ongoing encouragement that is critical to a patient’s improvement.”
Research for WE FEEL was conducted by Edelman StrategyOne, using the field services of Harris Interactive Service Bureau. The 20-minute survey was fielded between May 5 and May 11, 2010. The findings are nationally representative of diagnosed, female fibromyalgia sufferers in the US.
The total sample of 508 yields a margin of error of ±4.4% at the 95% confidence level, which means that 95 out of 100 times that a sample of this size is drawn, the results will not vary by more than 4.4 percentage points in either direction. The statistical significance is reported at the 95% level.
“I have a problem—unexplained excessive sweating, like just stepping out of the shower, hair dripping wet, clothes soaked! … It has put a big damper on my lifestyle.”
“My limbs get so cold and painful … and yet my face will be sweating from the heat inside.”
“What exactly causes the excessive sweating? … I don’t bother to wear makeup in the summer because there is no point—it just melts off.”
Excessive sweating is one of those bizarre symptoms that rarely make it onto symptoms lists or grab the attention of researchers.
That’s understandable since we have much bigger problems. Still, it can have a major impact on your life.
While doctors and researchers have noted that excessive sweating can be a symptom of these conditions, you may want to talk to your doctor about complex regional pain syndrome. It has similar symptoms and some research suggests excessive sweating may be more common in that condition.
The only cause that’s “curable” is the medication side effect, and that may not be an attractive option to you if the drug is doing more good than harm. Your doctor may have ideas about medications that help control sweating.
If you do have to live with this symptom, you may want to keep some items on hand to keep it from being obvious and embarrassing.
Loose powders: Powder on your face may help absorb sweat before you even know it’s there. You can also apply it after drying sweat off of your skin to keep from being shiny.
Oil-absorbing face wipes can keep you from having greasy-looking skin as well. They’re generally better than napkins or tissues, which work in a pinch but may be worse for your skin as well as less effective.
If your sweating isn’t tied to any particular stimulus, you might not be able to keep it from happening. However, if it’s tied to heat—and especially our tendency to become overheated—you may find that some of these things reduce the problem.
Extra antiperspirant, re-applied a few times during the day, and applied to non-typical places where you tend to sweat a lot may help.
Taking cooler baths or showers, or running cooler water over your body before you get out, may keep you from getting overheated and sweating more.
Especially if you tend to be cold a lot, you may frequently find yourself dressed too warmly for the environment. Dressing in layers gives you more temperature-control options.
Choosing cold drinks over hot ones and avoiding hot foods can help.
Once sweating starts, it may be difficult to stop. You’re better off trying to prevent it in the first place.
One important thing about excessive sweating is making sure you stay hydrated. It’s important to replace both the water and the electrolytes you sweat out.
People with fibromyalgia complain of chronic pain throughout their body as well as increased sensitivity to pain. Doctors often have trouble treating this pain because it’s unclear what causes it, the study authors noted.
In the new study, injecting lidocaine into peripheral tissues — such as the muscles in the shoulders or buttocks — effectively reduced pain sensitivity, the researchers found.
“We hypothesized that if the pain comes from the peripheral tissues, and we can take this pain away by injecting local anesthetics, then this would be indirect proof of the importance of peripheral tissues for the clinical pain of these individuals,” study lead author Dr. Roland Staud, a professor of medicine at the University of Florida College of Medicine, said in a university news release.
“Over-the-counter medications and [narcotic] prescriptions such as opiates aren’t really effective for controlling chronic pain conditions,” he added. But with the new therapy, “we are able to explain the pain of chronic patients better and manage it better,” Staud said. “We are making progress but it will take time.”
The study involved 62 women with fibromyalgia. Each woman received four injections: two in certain muscles in their shoulders and two more in their buttocks. Some of the women received lidocaine injections, while a “control group” received saline injections.
Right before the injections were given and 30 minutes afterward, the women received mild pain stimulations delivered through mechanical means or through heat.
Compared to “dummy” saline injections, lidocaine significantly eased the women’s sensitivity to pain, according to the study published recently in the European Journal of Pain.
The researchers noted, however, that both lidocaine and the placebo resulted in a 38 percent reduction in pain at or near the point of injury.
But chronic pain affects the body differently than a specific injury, like a broken leg, the study authors pointed out. Chronic pain, they explained, actually alters nerve function along the spinal cord.
“The best way to treat chronic pain conditions is . . . [by] looking at emotional, sensory and tissue damage,” Michael Robinson, director of the University of Florida Center for Pain Research and Behavioral Health, said in a university news release. “We know there are central and peripheral and social and behavioral components to someone saying, ‘Ow, it hurts.’”
“That sensation may well feel more painful than if they just thought it was a tweaked muscle,” Robinson explained.
Two experts in fibromyalgia were unsure about the significance of the findings, however.
“There was no significant difference between the pain reduction in the placebo versus the treatment group — this signifies that it does not matter what the injection product is, but the act of injection itself might be the cause of pain reduction,” said Dr. Waseem Mir, a rheumatologist at Lenox Hill Hospital in New York City.
“One can then argue that the pain reduction was placebo,” he said. “To examine the placebo point, another arm in the experiment might need to be introduced where patients are not getting injected but taking a placebo pill.”
Dr. Houman Danesh is the director of integrative pain management at Mount Sinai Hospital in New York City. He said that “fibromyalgia is a complex disorder where patients are more sensitive to pain. It is mainly diagnosed by a rheumatologist by touching 18 diagnostic pressure points, and if 11 of them are sensitive, then the diagnosis is made,” he explained.
The study, titled “Prevalence of Axial Spondyloarthritis Among Patients With Fibromyalgia: A Magnetic Resonance Imaging Study With Application of the Assessment of SpondyloArthritis International Society Classification Criteria,” was published in the journal Arthritis Care & Research.It highlights the importance of vigilant management of fibromyalgia symptoms by doctors and patients, taking into account the possible underlying presence of inflammatory disorders.
Fibromyalgia patients can present a broad spectrum of symptoms, including chronic nocturnal back pain, morning stiffness, and disturbed sleep. However, these are also symptoms of an inflammatory condition called axial spondyloarthritis (SpA).
The spA is a chronic inflammatory condition involving the spine, pelvis, and surrounding joints. Although SpA and fibromyalgia are very different diseases, they can overlap and share similar symptoms.
Aiming to determine the incidence of SpA among fibromyalgia patients, a total of 99 patients with fibromyalgia underwent magnetic resonance imaging (MRI) evaluation for the identification of structural alterations common in SpA chronic inflammation1, such as bone erosion and spine deformations (sclerosis).
About 8% of patients presented symptoms of inflammation in pelvic joints, while 17% and 25% presented bone erosion and sclerosis, respectively. Despite the frequency of these symptoms, only 10% of fibromyalgia patients were positively SpA diagnosed,accordingto the Assessment of SpondyloArthritis International Society classification criteria.
“When approaching the clinical conundrum of differentiating between ‘pure’ fibromyalgia and those cases with an unsuspected underlying inflammatory disease, the physician must attempt to rely[on] onclinical judgment and on available diagnostictools,” the study’s authors, from medical centers in Tel Aviv, Israel, wrote.
Through blood tests that evaluate levels of a protein associated with inflammation, known as CRP, the authors found that the diagnosis of SpA was positively associated with increased CRP levels and physical function limitation. This result suggests that CRP could be used as a diagnostic tool for SpA among fibromyalgia patients.
“These results underscore the importance of recognizing the overlap between inflammatory and centralized pain in each patient and call for increased clinical vigilance in the process of differential diagnosis,” the authors concluded.
I stood in my closet this morning, looking around as though I’d never been there. I couldn’t remember what I was doing, why, or what I should do next. So I stood still, waiting for it to come to me. Moments before I had been violently panting like a wild animal, bent over in pain and hugging my own body. I’d simply gone upstairs to get dressed for the day, but just as it does every day of my life in varying degrees, my illness reminded me who was in charge.
Tears welled up. That happens a lot, too. I don’t always have words anymore when I want to express what I’m feeling so my soul expresses it for me. I forget. A lot.
I was first diagnosed with Fibromyalgia in my early 30s by a young doctor who had clearly just learned the word on a sleepover at Junior Doctor Camp.
“You will grow weaker and weaker until finally your muscles atrophy. Your life span will be drastically shortened, and you’ll live out your final year’s wheelchair–bound.”
My arms and legs go numb, almost always both at the same time but sometimes not. Either way, I fall down, bump into things, lose my balance. I can’t always tell where my foot is hitting, and when that happens you would think that our floors are made of chewed-up bubble gum.
My joints stiffen so severely that my ankles don’t want to bend and my elbows always feel like someone hit them with a hammer while I slept.
My muscles ache down to the bone in a way that feels like I am always battling influenza. It never stops. Ever.
But, by far the worst thing I’ve been living with for so long is extreme fatigue. I’ve thought so often about what word I could possibly use to describe what it feels like, and I’ve always come up empty. All I can tell you is the kind of fatigue I live with every day is what I believe it must feel like to die. When it’s very bad, doctors notice a palsy that comes over my face, and I have trouble even standing. I can’t rest enough to recover. I say it’s like someone is embalming me.
That can happen whether I am sitting in a chair with my feet up, or it can happen after I’ve played with my grand–monkeys. It doesn’t matter what I do. It’s always there.
I’ve said to every doctor I’ve seen, “I know that I will not live much longer. I’m dying.” I’ve known that for a long time. In years past I’d have bursts of weeks or months of energy that would allow me to behave normally. But, I always knew I was dying. In the past three years, I’ve really felt my life slipping away. There have been almost no bursts of energy or good days – just me waiting to go to sleep and not wake up.
I figured that in my autopsy results they’d discover what was really wrong with me and “the world” would know I wasn’t crazy. Well, at least as it pertains to my health.
Across decades I’ve been seen by new doctors, and with each came mounds of new medical bills. “You are presenting like you have MS,” they’d all say, and then after the same battery of tests came the same diagnosis.
“I don’t believe that either of those is a diagnosis,” I’d say to them. “You are labeling me with those words because I am a woman, and because you don’t know what else to do with me.”
Want to piss off a doctor? Tell them you think they don’t know what they’re talking about. One particularly cocky son-of-a-bitch said to me, “You seem like you’d rather I’d have said you have MS.”
I know people who suffer unspeakably from Multiple Sclerosis. It’s vicious. But, yes. Sometimes I’d have taken the diagnosis of that horrific disease if only to have a “real thing” that explains why I so often can’t walk the ten feet from my recliner to the closest bathroom without holding onto something. People believe you when you say you have MS. They understand (as best they can), that you’re not well and that you’re not a liar who is seeking attention.
I remember someone I deeply respect who suddenly made a proclamation on Facebook about women and Fibromyalgia. Going on a diet, getting some exercise, and growing up pretty much sums up the sentiment. There was no way I could tell people how sick I’ve been for fear they’d think of me as someone who wasn’t trying hard enough to be healthy, or worse, have them think it was all in my head.
Just to be sure, I went to see a psychiatrist. “Sher, you aren’t crazy. This isn’t in your head,” he said. To his credit, he also said, “I could prescribe Lyrica for you, but if I do that it’s the same as saying I believe what you’ve been told about what’s going on and I don’t. You have to keep pushing until you get to the person who can help you.”
Well-meaning close friends and not-so-well-meaning relatives had more to say when I would take them into my confidence about how unwell I was. To be fair, there is only one person who knows how bad I am. Some people in my life know a little, and some a little more, but no one knows the extent of just how damn bad it’s been beyond my partner.
You need to cut out gluten. You need to cut out sugar. You need to push through it. You need to exercise. You should pray. You need to try harder to force yourself to do uncomfortable things. My friend knows someone who knows someone who has Fibromyalgia and they are living their life, not laying around letting it happen.
And the worst things that have been said? The things that I can’t get out of my head and that bring me to tears even as I write?
An acquaintance dropped me a note one day that encouraged me to see an infectious disease doc here in the Midwest. A close family member of hers was made healthier by this man and she felt I should at least see him. It took months to get in, and I was profoundly skeptical.
The day came and I brought my partner with me to help me express what was happening, ask smart questions, and remember it all. When you lose your words and you forget things the way I do, you stop going to appointments alone. You stop going anywhere alone.
When he walked in, I knew right away something was different. He told me he was allowing two hours for our visit. I’d never had more than minutes with any doctor. He asked me questions about my current life and my past. In many cases, before I could answer he’d tell me what he suspected my answer was going to be. He was always right.
He explained his research into Fibromyalgia and Chronic Fatigue Syndrome and how it had become his driving passion for many, many years. He spoke to us about his research, the two papers he’d published, and the third on which he was currently working.
“I am 95% positive, Sher, that when we test your urine you will be positive for mycotoxins – black mold.”
In my life, no doctor has made such a bold statement. No physician of any kind had ever before been so confident to use such language BEFORE tests.
“It’s with good reason that you tell me you know you are dying. That’s exactly what is happening. The mycotoxins are killing you at a cellular level.”
And, then he said two little sentences that changed everything.
“I can help you. I will help you.”
I cried, and when at the end of our time together he got up to leave he opened his arms wide to me. “Around here, we give hugs.”
I came home and prayed that I’d be positive for black mold. There’s a prayer I never imagined.
When the tests came back, about two weeks, I received a copy of my results. There it was in black and white. Black mold. Mycotoxins. “You have a black mold factory living in your sinus cavity, Sher,” the doctor said.
It could have begun as a very young girl in the South. It could have happened all the years I lived in Kentucky. It could have been in Germany. It definitely could have been made worse again by all the flooding and old homes in Southeast Kansas.
“You don’t have to be living in a home with black mold on the walls to have this happen to you,” he said.
That’s been several weeks ago now, and every day I take the treatment he’s prescribed. It amounts to inhaling a drug to kill the mold. There is no way to know how long it will take, but I don’t care. If it takes a year I’ll do it every day and wait for this to be over. The only side effects I’m currently having are that I’m so nauseous almost all the time now, and the fatigue has gotten even worse… if you can imagine such a thing.
I’m waiting on a call from his nurse right now about those things, but I’ve told myself the nausea is from the treatment running down my throat to my stomach. And the worsening fatigue? Well, I used to tell my babies that when your body is working hard to make you well, you have to rest because it takes so much energy for healing. There is a war inside my body now and I’m just going to have to do the best I can to wait it out.
At least we know what the hell this invisible, torturous monster is and there is hope now. I want to be healthy again. I want to take my grand-monkeys on outings. I want to run. I want to drink coffee in Portland, and sleep in a treehouse in New England, and drink great wine with friends in Chicago, and eat the best pizza in New York, and zipline in some place lush and warm. I want to be me again.
I have two incredibly loving and supportive children and a man in my corner who says things like, “I’d rather have a life with you – even when you’re not well than life without you. No question.”
My hope is that you feel better very soon. Please know that while I cannot respond to every comment, I do read them all and my heart hurts for each of you who are suffering.
Fibromyalgia may be known to cause widespread pain and fatigue, but there are a number of other symptoms and side effects we don’t talk about as often. For many with fibro, gastrointestinal symptoms are unfortunately a common occurrence. Although researchers are not yet clear on whether the fibromyalgia itself causes these digestive issues to occur, studies have shown that irritable bowel syndrome (IBS) and other GI issues frequently coexist with fibromyalgia.
While this may be the case for some, others might have gastrointestinal symptoms as a side effect of medication, or even as a result of a different illness. Even though GI issues are common among those with fibro, it’s important to talk to your doctor about any symptoms you’re experiencing to determine the source of the issue and receive proper treatment.
Still, regardless of the cause, digestive issues can be frustrating and, at times, perhaps a bit embarrassing to deal with. It can be especially difficult if it feels like no one else really “gets it” – so, to better understand the reality of fibromyalgia and its coexisting issues, we asked our Mighty community to share the gastrointestinal symptoms they’ve experienced. If you have fibro and struggle with any of the following, know you’re not alone.
1. “Any stress I have normally shows as violent stomach cramps and diarrhea, especially when I have a high pain day.” – Elyse B.
2. “Getting stuck in the bathroom for an embarrassing amount of time.” – Lauren H.
3. “My stomach produces too much acid. The pain is horrible. I am getting my gall bladder checked. This has been going on since last summer.” – Crystal R.
4. “My doctor said that fibromyalgia and IBS-D [irritable bowel syndrome with diarrhea] tend to go hand in hand. It can be quite debilitating, especially when I’m on the downswing of my fibromyalgia because it makes the IBS–D so much worse.” – Taisha A.
5. “IBS, food intolerances, I’m uh… more poorly and gassy. Oh, bloated stomach always!” – Kirst F.
6. “I get stabbing pains in my abdominal area for no apparent reason. It’s random and severe and never in the same place so I can only imagine it’s something upsetting my gastrointestinal tract.” – Kelly W.
7. “I never know if eating will set off the IBS or not. It’s a guessing game I wish I didn’t have to play!” – Lori A.
8. “IBS with both constipation and the other end of the spectrum. I also get so bloated that I can’t wear pants sometimes. When I tell people they try to fix it with ‘Well what have you changed lately?’ or ‘Have you tried _____?’ But I know it is a matter of just waiting out the flare-up.” – Jaimie R.
9. “I have IBS ulcers, Barrett’s esophagus, bloating, trapped gas.” – Amethyst R.
10. “Almost constant nausea. And suddenly I have severe diarrhea and vomiting around my menstrual cycle.” – Christi S. F.
11. “For a few months, close to six months, I didn’t eat almost at all. I drank a lot of stuff. The thought of chewing made me nauseous and my stomach could only handle drinks basically. I can feel it trying to start again. It is the worst.” – Eloise T.
13. “Bloating which looks and feels more like ‘ballooning.’ I keep two sizes of clothes. My stomach dictates my fashion for the day. And add the gas… lots of it. I do mindful eating for my health and comfort.” – Vee Vee Y.
15. “IBS has to be one of the worst symptoms of fibromyalgia. I went for months on end with constant stomach upsets. It settled down but somehow the waiting and wondering when it’s coming back is almost as bad as a flare. It’s painful, it’s embarrassing and not being able to stray far from a toilet during a flare makes an already isolating illness that much lonelier.” – Sophie R.
16. “IBS. One day I can’t go and the next day I can’t stop going.” – Ashley W.
18. “There’s no way to prove it, unfortunately. But my GI issues damaged my pancreas so much that it doesn’t digest food properly. Took me five years to figure out I had exocrine pancreatic insufficiency. The excruciating pain that would land me in the hospital. My weight would fluctuate like crazy! (Still does.)” – Sydney L. V.
20. “Bouts of chronic diarrhea, especially in this heat. Which then leads to increased pain that wraps itself around my middle.” – Hayley C.
21. “What don’t I have? I feel like the Pepto-Bismol jingle. Heartburn, nausea, indigestion, upset stomach, diarrhea – yay Pepto-Bismol! Uggh.” – Brittany H.
Urinary incontinence is a term that basically describes any condition that makes it hard to control your bladder. Obviously, it’s not an easy thing to live with. It’s embarrassing, obviously. But many conditions that cause incontinence are very painful as well.
We usually imagine urinary incontinence as something that makes you suddenly urinate, or “wet your pants,” so to speak. But that’s not exactly accurate. More often, urinary incontinence is more like a weakened control over the muscles that control your bladder.
While sometimes it is difficult to get to a bathroom in time, more often an episode of incontinence causes urine to leak out slowly in small amounts. And there are actually a few different kinds of incontinence.
For instance, there’s something called stress incontinence. It’s caused by a sudden event, like a sneeze or laugh, that causes you to lose control of your bladder. Something similar is urge incontinence. Urge incontinence occurs when you suddenly have an intense need to urinate and you suddenly lose control over the bladder, allowing a small stream of urine to escape.
Urge incontinence is actually the most common type that people with fibromyalgia struggle with. Essentially, it occurs when you have a sudden, powerful need to urinate along with a minor leak. Although we aren’t sure what causes it, many people with fibromyalgia report having frequent urges to urinate. They usually occur at night, which can mean interrupting sleep to attend to the need to use the bathroom. As you can imagine, this isn’t the type of symptom you want to struggle with when you have a condition that causes chronic fatigue.
In addition, many people with fibromyalgia report chronic pain in their pelvis, along with frequent urges to urinate. This is a condition known as painful bladder syndrome (PBS). PBS is actually not one condition, but several. Any condition that causes these symptoms is considered to fall under the umbrella of PBS.
When it comes to fibromyalgia, the best explanation for PBS symptoms may be neurological. Fibromyalgia seems to affect the nervous system. And we know that other neurological conditions can cause urge incontinence by triggering the nerves that control the bladder. But until we understand more about the condition, we can’t say for sure why fibromyalgia leads to bladder problems.
Luckily, there are a few things you can do to manage the condition.
Obviously, if you’re experiencing urinary incontinence, you want to see a doctor and find a way to treat it. More importantly, it can sometimes be a sign of more serious health problems, so getting it checked out by a professional is always a good idea. Your doctor may also be able to find out what’s causing your condition. Just because you have fibromyalgia doesn’t necessarily mean that it’s causing your bladder problems. You might actually have one of a wide range of other conditions.
As far as managing the condition goes, there are a few lifestyle changes you can make that will help limit the urge to urinate. There are many different foods and drinks that act to stimulate the bladder and make urges worse. Anything with caffeine, for instance, works as a diuretic and triggers your bladder. So do alcohol, artificial sweeteners, and even chocolate.
Limiting your consumption of these things can help reduce the amount of urine you produce and help manage your bladder. And maintaining a healthy weight takes the pressure off your bladder, which can also help. Finally, smoking increases the amount of bladder trouble you will have, so quitting can help.
Doctors recommend a number of treatments to help control the need to urinate. They may instruct you in some pelvic control exercises that strengthen the muscles that control the bladder. This can help you hold in your urine more effectively.
In addition, you can actually strengthen your control over your bladder by waiting a few extra minutes every time you need to use the bathroom. This trains your body to hold urine in more effectively.
Finally, “double voiding,” or using the bathroom than trying again in a few minutes, can help empty your bladder more thoroughly and prevent the need to urinate.
So much has been written about the opioid epidemic, but so little seems to be out there about what living with true chronic pain is like. My husband, the Jay, lived and died in incredible pain at the age of 58. As his wife, I lived that journey with him.
Jay is no longer here to tell his story, but I want the world to see what I saw. I want you to know how he went from working 60 hours a week doing hard physical labor until his pain grew worse and he could not even get out of a chair on his own.
I want you to know the deterioration Jay went through over the last ten years. I want you to know what a good day and a bad day are like when you live with chronic pain. I want you to know exactly what happened when the doctor decreased his pain medication. And I want you to know how my husband finally made the decision to commit suicide.
I want people to understand that when chronic pain runs your life, eventually you just want the pain to stop.
First a bit of history. I met Jay in 2005 when we both stopped drinking. Two years later, Jay began to lose feeling in his legs and started having fallen, as a result of compressed nerves in his spine. The pain was so bad Jay had to stop working and go on disability, which started his depressive episodes.
Jay had a series of lower back and neck fusion surgeries. This was when he has first prescribed painkillers, antidepressants, and anti-anxiety medications. From 2008 to 2011, Jay tried various treatments to control the pain that lingered even after third back surgery. These included steroid shots, nerve blocks, and a spinal cord stimulator. Ultimately he had a drug pump implanted that delivered morphine, in addition to the pain pills he was being prescribed.
In 2012, Jay was diagnosed with trauma-induced dementia. I believe that diagnosis was right, based on his symptoms, but not all of the doctors agreed. Some believed the confusion was due to high doses of morphine and/or his sleep apnea.
By 2016, Jay’s confusion and memory issues were increasing. He was on a steady dose of 120mg morphine daily, in addition to the medication he was receiving from his pain pump.
Jay’s depression seemed to come and go, depending on the day and his pain levels. He was weaned down on his Xanax to 2mg a day to help him sleep. He was aware of the risks of combining Xanax and morphine.
Let me tell you what a good day was like before they changed his medications. I worked a full-time job from 2 pm to 10 pm five days a week. I would get home, and Jay would have my coffee ready for me at night. We would stay up and watch TV until 2 or so. When it was time for sleep, I went to bed and he slept in his recliner.
We started sleeping apart after his first surgery in 2007. He was more comfortable sitting up in the chair, but could never sleep more than three hours at a time. He knew sleeping in bed would just keep me awake.
A good day always meant it was not cold or raining. On a good morning, he would be up first and get the coffee started. He would take our two miniature pinchers outside in the yard on their leash for potty time.
We usually had at least one appointment a week, but if not we could have a nice quiet morning. That meant coffee in front of the TV. After a couple of hours of that, he might switch over to playing his computer games, but he was never far from his chair.
A typical adventure for us would involve going to Walmart. Jay was not able to walk through the store, but he hated using the handicapped carts. I could always see a look on his face when he had to do it. After going to the store, we might have lunch or an early dinner at Steak n Shake or Cracker Barrel. It always needed to be someplace familiar and comfortable for him. More than once we sat, ordered, and then took our food home because he was in too much pain.
In the summer we might walk the dogs after dinner. Just a quick two-block walk, but a lot of times he would have to stop halfway and go back home. A couple of times I had to go get the car and pick him up because his legs just would not support him anymore.
A bad day was awful for me to watch, and absolutely horrible for Jay to live. It meant no real sleep, just catnaps in the chair whenever he could. He always made coffee for us, but on a bad day he would forget to add coffee to the coffee maker and we would just have hot water. The pain was so much he was just distracted.
On many bad days, I would look over and see tears just running down his face because he was in so much pain. It also made Jay’s depression worse. We spent many cold winter nights talking about how much pain would be too much and would make life not worth living. It is the most horrible feeling in this whole world to hear the person you love most talk about ending their life.
In January 2017 Jay’s pain clinic decided they could no longer prescribe the high doses of morphine he was on. In addition, they were not going to continue seeing him if he decided to stay on Xanax. The Xanax was prescribed by another doctor, but they did not care.
I begged the pain doctor — yes, literally begged — for some other option. The doctor said that if Jay continued the Xanax he would no longer see him. He would not give another option for medications, and at one point even said that most of his patients with pain were “making it up.”
The last thing the doctor said to us will stick with me forever. He said, “My patient’s quality of life is not worth losing my practice over.”
When we left that day, we were barely in the car and I knew what Jay was going to say to me. I will never forget how sad his voice was when he told me this was it for him. He was not going to continue to live like this.
Through the month of February, as Jay’s medication was decreased, we spent time doing things we did not normally do. We went out on Valentine’s Day, he bought me the first jewelry he had bought since my engagement ring, and we went out to a fancy restaurant for dinner. Jay tried to cram in as many good memories as he could into that last month, but I knew it was costing him.
Jay’s next doctor’s appointment was scheduled for March 2, and we knew they were going to decrease his medications again. The night before, he woke me up to tell me it was time. I knew what that meant, but I tried to be strong for his sake. We talked all night long about what it meant, and how it should be. It was the saddest, strangest, longest night of my life.
Jay knew he did not have enough pills to kill himself. He also knew that if he were to try and purchase a gun, they would not sell it to him. It would have been almost obvious what he was going to use it for.
In the end, I bought the gun that Jay used — and yes, we talked about the ramifications of that action. We went to the park where we had renewed our vows in 2015. We talked in the car for a while, and then we sat in the same place we had cut our wedding cake. I was holding his hand when he pulled the trigger.
Through the shock and horror, my immediate feeling was one of relief for Jay. To know that he was finally out of pain was a weight lifted off both of us.
Because I purchased the gun that Jay used to end his life, I was charged under our state’s assisted suicide law. This charge was later reduced to reckless endangerment, and I am currently on probation. People close to me want me to be quiet about my role in Jay’s death, and I was at first. But I cannot continue that way.
I know Jay wanted me to put his story out there. I know he wanted people to know what it was like to live with the pain he lived with daily. When the doctor took away Jay’s medications, they took away his quality of life. That was what led to his decision. Jay fought hard to live with his pain for a long time, but in the end, fighting just was not enough.
We recently asked members of the Community if, as women, they had ever felt as if their pain had not been taken seriously by doctors or medical professionals. Here are some of their stories…
When I was 17, I started having a really hard time breathing. My primary doctor told me it was just asthma. It became progressively worse, and my inhaler wasn’t really helping. One night, I woke up basically having a panic attack because it felt like I couldn’t breathe. My dad rushed me to the hospital, and after giving me an EpiPen for an allergic reaction, the doctor proceeded to tell my dad right in front of me that I was probably making it up to get out of school.
This happened several times with doctors telling me I was overreacting. After two months, I finally went to a specialist who discovered that I had a severe infection on my voice box that was inhibiting airflow into my lungs.
A few years ago I had extreme abdominal pain, diarrhea, vomiting, and a fever for two days. It just would not get better. I finally made it to urgent care on the third day, and the male doctor said, “It sounds like you’re just having really bad menstrual cramps.” I happened to be on my period at the time, and he advised me to take some ibuprofen and “sleep it off.” Fortunately, the (female) attending doctor who came in to do the actual exam took one look at me and sent me straight to the ER. Turns out I had an E. coli infection and I spent the night in the hospital hooked up to an IV. Some “menstrual cramps,” amirite?
I was in a skiing accident when I was 17. I immediately knew that I hurt my knee very badly as it kinda just snapped down and swelled up right away. I went to the walk-in clinic and I told the doctor what had happened. I told him what my pain level was at, and he told me it couldn’t have been that serious, that I just bruised up my knee and I’d be fine shortly. So I had no further testing and was sent on my way.
After two months, my pain hadn’t improved at all, and my knee was still swollen, so I went to see a different doctor. Turns out that I had torn my ACL, MCL, and meniscus. I needed a MAJOR surgery, and everything was worse because the first doctor didn’t listen to me and get me to an orthopedic right away. I ended up getting scheduled for surgery ASAP and they did everything they could to make my knee normal again. But because of the initial response to my pain, I have never been able to ski again, I had to stop jogging/running, and my knee will forever and always be a bit messed up. —MrsH810
In college, I got shingles and waited a while to go to the hospital because I had been misdiagnosed by my student health center. Eventually, I showed the spots to my friend, who said it looked like shingles and took me to the emergency room. I walked in and told the male nurse that I thought I had shingles, and he scoffed and said, “Where did you come up with that? The internet? You would be in a lot of pain if you had shingles.” As soon as I lifted up my shirt he said, “Oh my god you have shingles! Isn’t this painful?” Yes…it is painful. That’s why I’m here.
I was accidentally elbowed in the face during a concert and my face started swelling almost immediately, so I went to the ER. The doctor did no diagnostic testing. Before he even asked my name, he said it looked like any normal black eye. Didn’t even prescribe me ibuprofen for the pain. Months later, I still hadn’t healed. I went to a plastic surgeon and he discovered that not only had the elbow cracked my eye socket, but a piece of bone had chipped off and was floating around in my face.
I could have lost my eyesight and/or all use on that side of my face due to nerve damage. I should have had surgery within 48 hours and at the very least a CT scan. Now, unless I have my face re-broken in surgery, I will never be fully recovered. All because a doctor didn’t believe I was really in as much pain as I claimed.
I have chronic pain in my legs that sometimes limits my ability to walk when
I have severe flares. One time during a particularly bad flare, I went to the doctor for help and she offered— in all seriousness— to escort me to the psych ward.
When I was 15, I had minor knee surgery. The first day was fine, but each day I got progressively worse, to the point that I couldn’t even put weight on my leg at all. It was so swollen that it looked like my thigh went straight down my leg. My temperate reached 102. When I went to the office to get my stitches removed, my mom expressed concern about the excruciating pain and fever. The doctor laughed and said, “It’s just because she’s blonde and 15.”
A week later I came in again because the problem was still there. After unsuccessfully trying to drain my knee, he brought in his colleague. That doctor took one look at my knee and had me rushed to the hospital. Turns out I had a staph infection that had been doing work on my knee for what was at that point 18 days.
I went to the ER with severe abdominal pain. It was so bad that I was actually screaming. The doctor asked me some questions, did no tests, and sent me home with a diagnosis of gas. I went back a week later for the same reason. This doctor actually did his job and found a giant kidney stone.
When I was in high school, I was at basketball practice running sprints when I was suddenly overcome with the most excruciating abdominal pain I had ever experienced in my life. I was only 15 years old. My mom rushed me to urgent care. The doctor came in to see me and began asking me questions about what was going on at school and in my family instead of about the pain I was experiencing.
She then noticed that I had an “in memory” button on my letterman jacket. My friend had died in the previous year and as soon as she saw the button she was convinced that my severe abdominal pain was because I was sad. She actually told my mom, “This is common for teens who experience grief.” She then took the button off my jacket and made me talk to it and tell my friend “goodbye” so that I could “move on with my life.” I was so appalled and freaked out I just stared at her. Little did I know that I had actually had an ovarian cyst burst and I was suffering from severe endometriosis.
During my freshman year of college, I began experiencing seizure-like spasms and losing consciousness often. I went to the hospital near my university, where I filled out a questionnaire and included when prompted, that I was a theatre major. I was given fluids and released. A few weeks later I passed out and started spasming again. A friend took me to the hospital. As I was being wheeled on a gurney for testing, still experiencing seizure-like symptoms and extreme abdominal pain, a female nurse ran alongside my gurney to tell the other medical professionals to not take me as seriously, because I was an actress. They decided to do less testing than they originally planned to do, and when I was sent back to the bed in the ER I had been assigned to. I signed myself out of AMA (against medical advice) because I felt that I was being ignored.
Later, a different doctor told me that the spasms were due to a reaction I was having to a medication I was on due to having a kidney transplant just over a year prior to this. I was taken off the medication and the seizure-like activity ceased. Fast-forward two years, and I am still experiencing severe abdominal pain over my kidney transplant in my abdomen. I was finally diagnosed with endometriosis and pancreatitis and spent almost a week in the hospital after becoming septic. Turns out I wasn’t acting, and I was facing two serious medical issues on top of the transplant. It’s been nearly 10 years since this happened and I still think about the pain and suffering that could have been alleviated if I had been taken seriously at that time.
It took FIVE doctors before I was finally diagnosed with endometriosis. The first doctor told me that period pain was normal even though I said the pain wasn’t just during my time of the month. The second doctor said it was probably gastrointestinal issues and that I should go to a specialist. The third doctor prescribed birth control after birth control that helped in no way. The fourth doctor thought maybe it was endometriosis, maybe it was cysts, couldn’t be sure, and gave me a painkiller to help and sent me on my way. The fifth and final doctor got me scheduled for an ultrasound. She prescribed a birth control that did help but when the pain worsened she scheduled surgery for a laparoscopy in which they discovered that I did, indeed, have endometriosis.
After my rheumatoid arthritis went into remission, doctors couldn’t pinpoint why I was still living with chorionic widespread pain. The pain felt similar to my RA but not quite the same, and it became debilitating. One doctor, after seeing my blood work, literally called me a “druggie.” He accused me of looking for prescriptions even though I had specifically stated that I was in desperate need of a diagnosis and didn’t want any pain-relieving pharmaceuticals from him. I walked out of his office in tears and almost gave up. I felt like the lowest human being on earth and didn’t want to go through that humiliation again. Luckily I have a wonderful support system that encouraged me to keep trying and finally found a doctor that diagnosed me with fibromyalgia.
Basically, my entire experience with hyperemesis was a mess. I was pregnant and throwing up 10–15 times a day. It took several trips to the ER and three different doctors before I found someone who believed me and gave me anti-nausea meds. Most people don’t take it seriously because they assume it is normal morning sickness. I lost close to 30 pounds in the first two months of my pregnancy, I could not keep down water, and I was so dehydrated I was having muscle spasms. But I had a doctor tell me I wasn’t sick enough to take time off work.
I needed knee surgery due to my knees being incredibly hyper-mobile. They would constantly shift out of place and dislocate while walking. It was so incredibly painful sometimes that I legitimately could not walk. I met with a surgeon who acted like I was some weak girl simply because I wasn’t injured playing sports or during physical activity. He would only speak to my mother about maybe getting a brace or working out more to strengthen it (which I did and didn’t help) and would act like I didn’t exist or like I wasn’t even in the room.
I had abdominal surgery and the doctor took me off my pain meds two days later. That night, I experienced the most excruciating pain in my abdomen. It was very intense. The next morning, still in pain, I told my doctor. He said I was being sensitive and sent me home. I ended up back in the hospital 24 hours later with a deadly infection called peritonitis and was sufferingsepsis. My doctor almost killed me by brushing off my pain.
When I was 14 or 15, my parents took me to the ER because I was crying and vomiting from a pain in my lower stomach/pelvic area. It took four hours to get into a room and by that time I had vomited three times. A doctor finally came in and I told him everything I was experiencing. He said I was probably about to start my period. I said no, that I had just finished like a week and a half ago. He gave me fucking Tylenol while I was still crying and curled up in a ball on the bed. Two hours later a female nurse came to check on me and everything was still the same. My mom asked for a different doctor because the guy wasn’t listening to me. Somehow the nurse got a female doctor to come in. She gave me an ultrasound, and I ended up having massive cysts that were rupturing on BOTH of my ovaries.
I injured my shoulder during a swim meet and it continued to hurt beyond the time the doctor said it would. Six years later, after begging for surgery to alleviate pain, my doctor barely agreed to exploratory surgery to see if anything was wrong that he couldn’t see or detect with the other methods he tried. After surgery, he apologized to me… There was a huge tear in my labrum that required surgery to fix.
When I was in eighth grade I had extreme abdominal pain and went to my local clinic. Without doing a single test, or listening to my symptoms, he told me I had a UTI. I have rushed in again the next day and this time I had a different doctor. She immediately discovered that my appendix had burst and that I needed to get to an ER right away. I ended up being in the hospital for five days.
I had been going to my OB-GYN for nine years telling him that I was hurting horribly with my periods and cramping between periods. He told me I’d grow out of it. I got fed up and switched to a different doctor in a different town. She had me in the operating room within a month and I was diagnosed with stage 4 endometriosis that probably could have been treated or cured long before it got this bad.
I experienced back pain for months, but being only 22, healthy, and relatively active I knew something wasn’t right. My doctor told me to get a chest X-ray and take some Advil. A few months later I ended up in the ER because the pain was so severe. The ER doctor told me I probably had a kidney infection. When the test came back negative, I was told to go home and see my primary care again. My pain was so severe I refused to leave and asked for an ultrasound of my gallbladder. He rolled his eyes but finally agreed. About an hour later he told me that I have gallbladder disease and need to have it removed immediately. He couldn’t even look me in the eyes!
I had chronic stomach pain growing up and the pain was so severe that I was often curled up reeling in pain. There was no relief whatsoever. It randomly came every month or so and lasted about a week. I went to the doctor multiple times. The doctors always passed it off as overeating or gas pains. Last year I finally went to the ER because the pain was so bad I couldn’t breathe. Turns out I’ve had Crohn’s the entire time.
A couple of years ago I went to my doctor because my left underarm and arm had been extremely sore for a few days and I couldn’t really stretch my arm all the way out. When I suddenly got blue marks down the inside of my upper arm, too, I decided to get it checked out. My personal doctor thought it could be something potentially dangerous (blood clots were mentioned), and she sent me to the hospital.
The doctors at the hospital were a completely different story. They kept asking me if I had hurt it somehow/strained it by carrying something heavy(!)/other mildly insulting explanation. I told them I wouldn’t be there if I knew the reason why it hurt. They took a blood test and it came back negative for any sign of blood clots. That just made them more sure it wasn’t anything serious. But I kept insisting I KNEW there was something wrong. Very reluctantly the doctor at the hospital said that, if I wanted, I could come back in the morning for an ultrasound. I quickly said YES, PLEASE, and went home.
The next day I went in for the ultrasound and guess what: one blood clot in my arm. Yup
I have a bladder condition called interstitial cystitis, which means that the lining of my bladder (which protects it from acidic urine) doesn’t form properly, and my bladder and the surrounding muscles often spasm, causing pain and preventing me from urinating properly. When I was 23, I went to a urologist, after the third negative UTI test in a month, for further diagnosis. The first urologist I saw listened to my symptoms, and dismissively said, “What do you want me to do about it?” I was shocked but asked him to please run whatever tests he could. He agreed to do a cystoscopy, and the day of told my mother in the waiting room that he didn’t think he would find anything and I probably just drank too much alcohol, which irritated my bladder.
During the cystoscopy, they filled my bladder with water to expand it, my heart rate went up (indicating pain), and they found tiny ulcers on the lining of my bladder. The doctor sheepishly told my mother what they had found and gave me the name of a urogynecologist who specialized in my condition.
During the end of my pregnancy, I started having severe pain in my lower back and right hip that radiated down my leg into a couple of toes. After my daughter was born, the pain did not improve. I went to multiple doctors, including OB-GYNs and primary care physicians. Everyone said nothing was wrong. Three years later, I went to a new doctor for a basic yearly physical. I casually mentioned the pain to him. He ordered a slew of tests, from blood work to X-rays/MRIs/EMGs, etc., but everything came back normal. He gave me a prescription for narcotics (I did not ask for them) and told me to come back in a month. When I returned he acted shocked that I was there just before a month had passed, even after I explained why. He berated me and made me feel awful, claiming I was only there to get more pain pills. When I told him that I had hardly taken any of the pills because they did not alleviate my pain at all, he asked me if I was selling them and had me take a drug test. By the time I left his office that day I actually felt like I had done something wrong.
I decided to take a more natural approach because I could not put myself through that again and went to see a chiropractor. He took X-rays. He immediately showed me what was causing the severe pain. He sent me to an orthopedic surgeon. Unfortunately, this doctor was in the same network as the original PCP and saw the notes from my two previous visits. He took new X-rays but had me lying down for them all. He said they looked fine and once again accused me of lying to get narcotics. Once again I had not suggested in any way, shape, or form that I wanted any sort of prescription. I explained what the chiropractor had shown me on my previous X-rays. After much pleading, he agreed to take X-rays of me standing. He immediately apologized and agreed with what the chiropractor had said. He said that no amount of narcotics would have any effect on this type of pain.
I was 19 on a job in San Francisco by myself and thought my appendix was rupturing on my flight over. I went straight to a doctor when I landed, and he insisted it was cramped. The pain persisted and I ended up passing out on the job and had to be brought in to the ER. Turns out I’d been feeling and passing kidney stones for four days. Thanks, doc.
I’ve struggled with chronic stomach issues my entire life, and I started seeing this GI doctor a couple of years ago. He was literally so sexist that he would only talk to, shake hands with, and properly address my boyfriend. It was as if my boyfriend had to be the messenger for me, to explain how bad my health issues had gotten. I had two procedures done, and then that doctor ended up diagnosing me with IBS. I was crushed. I knew it was something more severe than IBS.
When I got a new GI doctor a few months later, I FINALLY learned that I have a chronic illness— an autoimmune disorder — that can’t be cured and can lead to cancer and other horrible things if it goes unchecked for a long period of time.
When I was 20 and in college, I was menstruating heavily (and painfully) for 40 days before my friend finally convinced me to go to the ER. Once there, I waited four hours in a paper gown. Finally, a male doctor examined me, deemed that my bleeding wasn’t “too heavy,” and gave me two Advil for the cramps. He told me if I was still bleeding in another month I should make an appointment to come back.
After I told my mom this, she scheduled me with her gynecologist, who immediately did an ultrasound and found I was suffering from PCOS (polycystic ovary syndrome) and that my small cysts were bursting, which was causing the pain and heavy bleeding. She took my pain seriously and prescribed me stronger ibuprofen for the pain and hormonal birth control to control the cysts, and also an iron supplement because of the blood loss. Had I gone another 30 days, as the ER doctor had recommended, I would have been severely anemic from blood loss.
I went to the ER a couple of weeks after I had my gallbladder removed. I was in terrible pain, completely keeled over. My husband pretty much had to carry me into the ER and talk for me because I couldn’t move. The doctor told me it was just cramped and sent me home. When the pain wouldn’t go away, I went to different urgent care. The doctor there did an MRI and found that a gallstone had actually been stuck and sealed in a bile duct. It required another surgery to remove it, and if I hadn’t gone elsewhere it would have gotten much, much worse.
I was 36 and had lived with muscle/joint pain since my early twenties. Whenever I brought it up to my general practitioners, it was pushed aside and treated as not important since the pain roamed around my body. I had my knee go out one day after taking what should have been an easy walk. I went to another GP and after an X-ray came back clear, she actually rolled her eyes at me. I insisted I be treated. She told me I probably needed to lose some weight (leftover from pregnancy). I kept insisting something was wrong. She begrudgingly said, “I guess I can refer you to a rheumatologist.” Turns out I have fibromyalgia. And I have for about 15 years now. Don’t give up! Your health is too important!
If you’re experiencing chronic pain, a doctor may recommend that you have a nerve block, a temporary or permanent procedure that disrupts specific nerve activity. It can help diagnose or treat certain types of neuropathic pain, or pain caused by nerve dysfunction or damage. Nerve blocks may be performed by injecting chemicals or anesthetics to the area or by deliberately cutting or damaging certain parts of the nerve.
Many people receive nerve blocks without even knowing it. For example, dentists commonly use nerve-blocking agents such as novocaine to numb the mouth during potentially painful procedures.
If your doctor is trying to diagnose a chronic pain condition caused by nerve dysfunction, he may use a nerve block to pinpoint the exact problem area. In addition to a nerve block, he may also perform an electromyography (EMG) and/or a nerve conduction velocity (NCV) test to narrow down the exact cause of your chronic nerve pain.
Nerve blocks can also treat chronic neuropathic pain, such as pain caused by nerve damage or compression. They are regularly used to treat back and neck pain caused by herniated discs or spinal stenosis. Nerve blocks may be used to control pain temporarily or permanently, depending on the procedure used.
A local nerve block is performed by injecting or applying local anesthetics, such as lidocaine, to a certain area.
An epidural is a local nerve block that involves injecting steroids or analgesics into the area that surrounds the spinal cord. Though common during childbirth, an epidural may be also be used to treat chronic neck or back pain caused by a compressed spinal nerve. Local nerve blocks are usually temporary, although some may be repeated over time.
A neurolytic block uses alcohol, phenol, or thermal agents, such as cryogenic freezing, to treat chronic nerve pain. These procedures actually cause damage to certain areas of the nerve pathway. This means a neurolytic block is usually appropriate only in severe chronic pain cases, such as cancer pain or complex regional pain syndrome (CRPS).
A surgical nerve block is performed by a neurosurgeon and involves surgically removing or selectively damaging certain areas of the nerve. Like a neurolytic block, a surgical nerve block is usually reserved for severe pain cases, such as cancer pain or trigeminal neuralgia. Most surgical nerve blocks are permanent.
Even a temporary nerve block such as an epidural carries a risk of permanent nerve damage. Because nerves are extremely sensitive and regenerate slowly, even a tiny error in calculation can cause devastating side effects. These include muscle paralysis, weakness, or lasting numbness. In some rare cases, nerve blocks may actually irritate the nerve further, causing an increase in pain.
Fortunately, skilled and licensed health practitioners, such as dentists, surgeons, and anesthesiologists, perform these delicate procedures.
While there is always a risk of nerve damage during these procedures, most nerve blocks successfully reduce chronic nerve pain.
You may feel temporarily numb or sore after your nerve block, and you may notice some redness or irritation to the area. This is usually not permanent and should fade with time. If you have had a surgical block, you may be asked to rest for a certain period of time after your procedure. Depending on the complexity of the surgery, you may have to spend a few days recovering in the hospital.
Some pain may persist after your nerve block, but that doesn’t mean the procedure wasn’t effective.
Additionally, some nerve blocks may cause swelling, which compresses the nerve and requires time to subside. If you find the side effects of your nerve block are lasting longer than expected, contact your doctor.
