The Intesity of Lyme Pain
Discussion about personal pain can become heated and ugly when someone who suffers feels misunderstood, which happens frequently for people who suffer with Lyme.
It is perfectly understandable.
People want to empathize, they want to comfort others in pain by sharing their own experience whether it is even remotely similar, which with Lyme is rare.
A Google search for the “scale of pain” returned almost 15 million results! Fortunatelty for me I found the reference I was looking for very quickly in Wilipedia and published by “Tipna” -( A Blog dedicated to learning, sharing and caring for others from around the world.” The folllowing is a close replication of an article written by Jack Harich in July of 2002 entitled, “The Comparative Pain Scale” and is most pertinent for those of us suffering with Lyme disease.
A bit of web research shows there is actually no definitive pain scale in use in the medical industry today. The best I could find was an article on Elder Pain: Assessment of Intensity (this link is now broken). This listed several scales, none of which had uniform, objective descriptions of pain per level. For example, the Verbal Description Scale (VDS) uses these words to describe pain levels:
0 = No pain
1 = Mild pain
2 = Discomforting
3 = Distressing
4 = Intense
5 = Excruciating
Or from the Mayo Clinic the scale goes from 0 – 10:
0-1 No pain
2-3 Mild pain
4-5 Discomforting – moderate pain
6-7 Distressing – severe pain
8-9 Intense – very severe pain
10 Unbearable pain”
But what is mild to one person may be terrible to another. Or if you are feeling tired one day and not the next, pain may feel worse when tired, due to the very subjective nature of the descriptive words. One complaint about this scale is “Patients tend to use the middle words and thus distort the assessment.”
It also seems that many attempts to connect the level of pain to the ability to function socially and professionally is made much more difficult because the patient’s suffering is affected by other symptoms of Lyme disease such as fatigue, swollen joints, and dizziness to name a few; where specialists have yet to satisfactorily untangled the symptoms between normal pain and “neuropathic” pain and even “neuropychiatric” pain.
“What’s the difference?” You may ask, “I’m in excruciating pain and frankly I don’t care where on the scale my pain falls, I just want relief from it all!” And indeed, many Lyme victims are driven to take their own life as a result of the frustration of relentless, intense pain.
Thus a new pain scale (see below) needs to be developed. Use of it would give pain ratings that would be more reliably compared, both from patient to patient, and from day to day on the same patient. It is objective and repeatable because it compares your pain to a known level of pain or behavioral symptoms. The scale is logarithmic. Note that above level 4 you cannot adapt. Note that your pain level probably varies. The descriptive words describe pain intensity, not type of pain.
The two end of the scale, zero and ten, are the two possible extremes. I first described them, then worked up from zero, and when I got to about four I started working down from ten. Eventually the gap closed, fidgeting was done, and the result is hopefully a smooth logarithmic curve and an easy to use scale.
To use the scale, first determine if your pain is Minor, Moderate, or Severe. Then look at the levels within that group and select the one the comes closest to describing your level of pain.
Comparative Pain Scale
0 No pain. Feeling perfectly normal. Minor – Does not interfere with most activities. Able to adapt to pain psychologically and with medication or devices such as cushions.
1 Very Mild. Very light barely noticable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.
2 Discomforting. Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. Note that people predictably react differently to this self-test.
3 Tolerable. Very noticable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the time you don’t notice the pain. You have adapted to it. OR, Moderate, Interferes with many activities. Requires lifestyle changes but patient remains independent. Unable to adapt to pain.
4 Distressing. Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the similated pain is initially piercing but becomes dull after that.
5 Very Distressing. Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong, or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that you normal lifestyle is curtailed. Temporary personality disorders are frequent.
6 Intense. Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migriane headache combined with several bee stings, or a bad back pain. OR, Severe. Unable to engage in normal activities. Patient is disabled and unable to function independently.
7 Very Intense. Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.
8 Utterly Horrible. Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache.
9 Excruciating and Unbearable. Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn’t work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer.
10 Unimaginable and Unspeakable. Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss, have experienced level 10, or those with Lyme disease.
Pain is inherently subjective, however, in medical treatment, the goal is to deal with a patient’s own description of pain and not what is, or is not apparant.
“Since 1973, the multidisciplinary pain clinic has come into its own. Many clinics now offer a variety of therapeutic approaches to effective pain management, including physical therapy, acupuncture, “TENS” (transcutaneous electronic nerve stimulation), hypnosis, behavioral modification, and many evolving therapies based on more sensitive technologies.
The following recommendations are excellent. Richard Sternbach, of the Pain Treatment Center at Scripps Clinic and Research Foundation in La Jolla, offered these 7 steps on how to live despite pain in his pamphlet (How Can I Learn to Live With Pain When It Hurts So Much?, revised in 1983):
1. Accept the fact of your pain.
2. Set specific goals of work, hobbies and social acitivities towards which you will work.
3. Let yourself get angry at your pain if it seems to be getting the best of you.
4. Pace your activities. Get in shape, and keep fit. Learn to relax, and practice it.
5. Time your medications, then taper off them.
6. Have family and friends support only your healthy behavior, not your invalidism.
7. Be open and reasonable with your doctor.”
For those of us with Lyme disease, the list above seems horribly understated. With suicide listed as a common conclusion to those suffering from the pain caused by Lyme disease, one can only imagine the darkness and despair of our suffering. But again, even amongst those who suffer from pain in the Lyme community, you have those on one side of the spectrum who can function like a normal person, and on the other side of the spectrum you have a younger, healthier looking Lyme infected victim who is days away from taking his or her life. The enormous differences in pain can certainly not be measured by our inept eyesight, or even a sophisticated questionaire.
How can those in pain be helped? I have listed some extremely helpful supplements on www.Lyme DiseaseResource.com under “Relieve Symptoms” (which I am the first to admit is a overly optimistic heading – for some people there is simply NO RELIEF!). But listed within several of those tabs is a product, GABA, that I could never live without – even though my medical doctors have done a commendable job of working together, and working “outside of the box”. I am continuously amazed that so few in the Lyme forums have even heard of GABA, let alone having tried it!
If you are in pain and/or suffer from anxiety, please buy a bottle of this amino-acid inhibitor here.
Please share your story of Lyme pain and how you manage it.
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Posted on December 3rd, 2008 under Chronic Lyme Disease, Coping with Lyme Disease, Product Reviews • Tags: Chronic Lyme disease, Suffering With Lyme Disease, Symptoms of Lyme disease. • 
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December 3rd, 2008 at 11:53 pm
Interesting that you should blog about this today, because I just looked up GABA on WebMD to see the comments on lyme patients taking it.
Although I’m glad to see someone talking about real physical pain related to lyme (because I suffer from it) some of the recommendations you’ve printed seem overly simplified in dealing w/physical pain especially #5 and #6. I work real hard to time my meds, just as my doctor ordered, so please explain to me why I should taper them off? And #6, yes, I believe in family/friend support and healthy choices, you make it sound like no one should support people who are on pain meds.
I don’t understand why I have pain w/lyme, and some people in our support group have pain and some don’t. I guess it depends on how the lyme personally affects each individual…and since doctors/scientists only now are starting to even understand lyme, if they don’t know why some have pain and some don’t, how can they fix it?
I do know this. I would not be able to function without the pain meds. My pain level is debilitating, keeps me from being able to think straight. I’m on the lowest level of pain management/meds and they don’t get rid of all my pain. Not even close. I often wonder why people and doctors are so afraid of prescribing meds that can help people actually live. I have never once felt a ‘high’ on any of my pain meds. I’ve tried everything from hypnosis to acupuncture to anti-depressants, you name it, I’ve tried it. Nothing.
Please help me understand. I had doctor after doctor falling over themselves to get me on an anti-depressant, however completely ignore my pain levels. Much rather screw w/my brain chemistry. Not all my pain is neuropathic.
You talk about suicide and about how it’s chosen by many sufferers. How sad that is. It took 8-15 years just to get my lyme diagnosis, the last 2 years in almost constant pain. Inflammation levels and sed rates thru the roof, but no one would listen. Open and honest w/my doctors? How about they try and be open and honest w/me. Get angry at my pain as suggested in #3. Yes, you could say I’m angry. It’s going to take me a long time before I trust any doctor besides my LLDoc. I can understand why people might consider suicide.
December 4th, 2008 at 1:38 pm
Dearest Monkey Friend – First, that portion of the post you referred to was by Pain Treatment Center at Scripps Clinic and Research Foundation in La Jolla – I should have made a bigger distinction about that – the recommendations by Scripps and my own…and honestly, I wish I had the answers! I wrestle with anger too, and get frustrated when all the Lyme blogs ooze the positive and avoid the dark and ugly. I am a die-hard optimist, but the depression I have experienced with this disease has me slogging about in slimy darkness with horrible creepy crawlies everywhere…no, its worse than that…I’m not sure words exist that can describe what we go through…
I intend to write more about the darkness – and starting with meds made sense for me because it has been the meds which have given me freedom from most of the pain. I have tried several times to get off the strong meds and GABA but I become so suicidal without the medical assistance…four of mu doctors have said (quite emphatically) Jenna, this is not a moral issue, it is a medical issue!”
Now I feel so much better about allowing the meds to do their job as long as I need them – I believe strongly that I will be so euphoric to be healed enough to go off the pain meds that it won’t be a problem (plus I have gone off strong meds several times due to surgeries) We will know when to taper them off…when we are symptom-free!
And I wondered the whole first year why I kept getting Vicadin prescribed when it didn’t touch the pain…so when my doctor finally REALLY listened to my pain and put me on Fent. patches I was so relieved! I have always been a proponent of prescription drugs when appropriate (as a long-time sufferer of migrains) and I worry that most of our Lyme community gets caught up in the purity of the powerful human immunity system and become VERY anti-prescription meds…perhaps its just the abx. I am very sorry to have written so poorly yesterday…I will try to do better in the future, and I intend to write more about the subtle seduction of suicide…I completely understand the overwhelming despair and hopelessness that ends with that sad choice, and it is my husband, a group of close friends and my children who keep me from taking the plunge…that, and the small spark of hope that I could help people like us…and that is what I pray for…to help people.
You can write me anytime about anything thats bugging you – I will always try to help!
Blessings,
Jenna
December 4th, 2008 at 7:07 pm
Thank you for your kind reply. This morning I reread my comment, and I think I let my anger run away w/me. As you know, treatment is long and tedious and costly. It’s hard to not be angered at the medical community that keeps ignoring this very real and widespread epidemic. Pain (joint and muscle) is very much part of my everyday life. I wish it weren’t so. I’m hoping and praying that with treatment my pain levels will subside, however, 8 months into treatment my pain level is the same if not a little worse. It’s hard to stay upbeat and hopeful, and I’m thankful for those in our support group, my family and friends. I found your doctor’s comment, that it’s not a moral issue, it’s a medical issue, very astute commute.
December 5th, 2008 at 12:07 pm
I forgot to reply to the GABA – my first LLD was actually the one who mentioned it, but I actually was prescribed Lyrica instead. I had to take a massive dose to keep the neuropathic pain bearable…especially my ears and pain associated with sound and the pain associated with light. I was on Lyrica for about 6 months and gained about 30 pounds (it is a side effect of Lyrica) but my self esteem was so terrible, I felt it was critical to find another med and although the original LLD had closed his practice, I looked back on his notes (he gave each patient notes on their appointments due to the Fog) and saw GABA mentioned…so I began to look for it. I live in rural Maine and my mother and husband couldn’t find it. I finally found it on the internet. Now, as you know, I am not a doctor so this is just my story…please discuss it with your doctor. he instructions on the first brand (also 750 mg) suggested up to 2 capsules 4 times a day, never more than eight capsules in 24 hours AND never to take milk products with GABA.
The NOW version I started slow because it said take one tablet daily, but with my pain patch I have found that taking 2 AM and 2PM works great most of the time but if it is particularly bad on some days I can increase the GABA and find better comfort. What is great is that it is anti-anxiety as well as pain reliever. I have never noticed any side effects… so it has been on my heart to tell my Lyme friends about it.
Blessings!
May 23rd, 2009 at 9:30 pm
I’m afraid my time of finding any real release is nearly over. The damage to my body is so severe & after years of all but screaming at my MDs that something was “wrong” mentally, finally a brain CT scan was done 2 months ago. It showed 2 large basil ganglia infarcs from previous strokes. “Prominent” atherosclerosis throughout brain “Prominent damage to intervertebral artery. I was advised ti update my living will. The next “Event” will likely be terminal
Infected 1987 on a jobsite in TX Hill Country. 2 ECMs appeared in March of ’87. Disease progressed rapidly. I had a “coronary event” June of ’87, hospitalized for “Viral Syndrome, Fever of Unknown Origin” in 1988. After my wife left in late ’88 I finally manged to get to family home in Sth Texas in 1989. I weighed 138 lbs (down from 178) Bells Palsy left side of face, could barely speak, could not read. I received a 21 day course of rocephin in 1992 which saved my life but did not “cure” my LD. A yera ago my rheumatologist started me on agressive steroids & transplant immuno-suppressants. The LD exploded to point of an ECM reappearing in it’s exact original position. I’ve Never heard of that happening. She became an LD believer but has been warned against treating outside her profession.
Diagnosed late 1991
Have never received any recognized appropriate treatment due to having moved to family home In Sth Texas, Texas Gulf Coast & regional Infectious Disease expert considers “Lyme Disease in Texas a Myth” (quote from local newspaper)
SSDI (total disability) since 1992 1st in US – Southwestern District for Lyme Disease Syndrome
• Degenerative disc disease – fused L4-S1. Transitional L3-4 fusion in aprox. 1 month. 4 section cervical fusion pending.
• Fibromyalgia/CFS
• Major arthritic changes; both knees, shoulders (LT shoulder surgery – 2004), Both wrists – Carpal tunnel surgery, generally every joint is involved
• Neurological deficits
• Osteonecrosis – top of left tibia
• Osteoporosis
• Major Depression
• Chronic Pain – morphine pump
• Testosterone deficiency – 100mg injections weekly to maintain levels. Original blood level of 19
• Heretofore unnamed metabolic disorder
• Low cortisol levels
• Etc…etc…etc…
Without any sense of melo-drama, I just will not last much longer. It has been exciting to see the explosion of LD information via the internet. In 1991-92 I had to scavenge for what little info I could thru library systems.
I don’t have a “web page”, Facebook page or anything like that.
May 25th, 2009 at 6:01 pm
Dear Bill-
Please don’t give up! You are not alone and there are LLDs in Texas that could help you with aggressive therapy…the steroids are disasterous for us Lymies…but I know how you get to that point of desperation…wanting something or someone to take the awful burden of trying to find the path to health while suffering with a disease that impairs your ability to think!
I have two names of practitioners in Texas that may be able to help you. If you are interested email me at jenna@LymeDiseaseResource.com
Blessings,
Jenna
May 25th, 2009 at 7:23 pm
I will email you. Another prob I have is I have to have fairly regular, powerful epidurals to keep my lumbar & cervical spine under control. I just had a lumbar epidural on May 1st & there’s debate on how long we need to wait until we go in on the cervical. I’ve shot up 101-12 lbs since the 1st.
Steroids no doubt brought on the osteoporosis at age 40. Also the osteonecrosis at top of tibia that will eventually cause joint to collapse & have to have a TKR.
But they are calculated risks – w/ the bone issues, the radical testosterone deficiency + all the complicating factors – they are doing all they can to stall surgeries as long as they can. Not a chance I’ll come out of the 3-4 section cervical surgery intact. But (esp w/ metabolic issues) small nicks on my skin take too long to heal & scar. Will I be able to recuperate from these surgeries at all? You have to consider; I live alone (beside my 2 beloved dogs) & isolated. Then you have anesthesiologists balking at the severe stroke risks. ie… I may be left w/ only the epidurals & steroid tools for as long as I can hold up. It just doesn’t add up.
November 6th, 2009 at 9:24 am
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December 23rd, 2009 at 1:06 pm
Hi my name is Casey. It’s incredibly painful for me to even type. It’s too painful for me to be able to read this blog in it’s entirety. So forgive if what I write is off topic or whatever. My quality of life is ZERO that scale or steps to mange pain I read above must have been written by someone who wasn’t in chronic pain. Fuck Lyrica it doesn’t work. What I am about to say is TRUTH: Someone who is in pain through out their entire body as I AM will understand when i say I think about ENDING IT ALL THE TIME. I am insane with pain every second of every minute of every hour of every day or every week of every month of every year. Boredom is just a word to me, i don’t get bored because my mind is fighting the pain ALL THE TIME. If I didn’t love my family so much I would have already shot myself in the face. I love life I want to be here but it doesnt seem right for someone to suffer like I do, I should be euthanized. No joke this is exactly how I feel. Doctor’s just talk to you, go on to theiir next patient, eat their lunch, make some phone calls and go home at the end of the day to their family. I was just another patient that gets forgotten about and they sleep snug in their beds at night and are comfortable and completely unaware oof the amount of suffering someone like me experiences. I will try to keep up on this blog but am incapable of pretty much everything so I will try………..
December 23rd, 2009 at 5:12 pm
Dearest Casey –
You are NOT alone! There are others, like me, who understand completely how you feel right now. I would be dead (suicide) many times over if my husband, family and frielends hadn’t stepped up to get me the strongest pain meds available!
I realize that many who read this blog are against taking prescription medication for their own personal reasons, and I totally respect each person’s individual decision how to manage their own unique disease.
You don’t have any other choice. Get to a compassionate pain doctor and get on a patch program. The doc will start with the lowest dose (25 mcg?) every three days and increase it as needed – I am on 125 mcg every two days and that keeps me sane and partially functional. You will never be able to recover until the pain is eliminated so you can rest DEEPLY – although even on the major meds I am on I still wake up every time I move in the night due to pain.
So I understand. Pain is very relative and some people have a low pain threshold and others a very high pain tolerance – don’t compare yourself to anyone else. Your body is unique and special. You deserve to be pain free as your treatment continues (my opinion).
Please don’t take your life! You will be helping people yourself some day – if anything else, Lyme teaches us compassion for others less fortunate.
Email me anytime you need a hand to hold…jennasmith1@gmail.com…please call, and PLEASE go to a pain management doctor asap!
Blessings,
Jenna
December 26th, 2009 at 12:44 am
Dear Casey,
I understand completely. I have no idea if Lyrica is helpful to me at all. I have some sensitivity to it that makes me a drooling, walking into walls idiot. And trying to explain this pain issue to anyone in the ‘normal world’ is hopeless. They don’t see any gaping wounds so… I am a friend of the Invisible Disabilities Network & purchased a t-shirt that says; ‘But you LOOK so good!”
I battled the pain issue (& still do) for so long. At times when vertebrae bone grated vertebrae bone the pain was so intense my b/p shot up to 210/140. Likely 1 of my “previous neuro events”. I’ve been to Chiropractors calling themselves Pain Doctors. Had one rural hospital anesthesiologist hang out his shingle as a pain specialist & he gave me 11 epidurals in less than 2 years. Say hello to osteoporosis & osteonecrosis. If the LD didn’t get me, 1 of these MDs would run a close 2nd. Many try to limit their time ‘in room’ (w/ patient) to 10 minutes or less so they can triple book & maintain a suitable profit margin. If I knew where an acceptable QUIT button was I would have punched it a 1,00 times over. A sympathetic GP prescribed Vicodin for me when he could…. I was a grown man crying & whimpering like a baby struggling to get in a piping hot shower for SOME relief!
Then God blessed with a miracle & a truly board certified anesthesiologist with an intense fellowship in Pain management & 3rd generation MD who just happened to have an obsession for wind surfing heard that Corpus Christi, TX was a windsurfers heaven! That was in late 2001 & it (he) saved my life. These are MDs that understand pain & what it does to body, mind & soul. And they treat pain in a multi-faceted approach. In certain flare ups trigger point injections bring things down from a critical level. I have some blown discs & there have been PERIODIC, properly time spaced epidurals & on… And yes there are pain meds. But they have a whole quiver of arrows to draw from. I wore the fentanyl patches for years & they were a godsend. No feeling of narcotic stupor etc… Unfortunately I live in a coastal, extremely high humidity area & they became problematic for me. I now have a med infusion pump that delivers a sustained morphine microgram dosage directly into my spine. We use Cymbalta & Rx NSAIDS for the general body pain but other techniques he has taught me. I am never 100% pain free. I do not need to be & keep my dosages as small as possible to maintain what is an ‘OK’ level for me. Nothing comes completely without side effects & to go high enough to give absolute comfort brings a malaise or drowsiness sometimes so it’s my trade off for staying as spry as I can:)) I also sought out & keep a very good psychiatrist on my team. Pain, depression & other issues are all processed in the same small region of the brain. He also has bio-organic ways of dealing with chronic pain. He is integral in the process & prescribes the Cymbalta & trains me in relaxation techniques & how to improve my sleep. Another piece of the vicious pain cycle.
I cannot say emphatically enough that you need to find a true anesthesiology trained, board certified MD with a Pain Management fellowship & specialty. If you have to drive 400 miles round trip once a month – DO IT! It is hard to express how it will change your life & outlook. Turn some of that frustration & despondency into anger & become 1 tough advocate for yourself. Pain & the stress it manifests is a killer. I can only promise you that there ARE well trained MDs in pain & understand it fully. They are much more common & well trained than even in 2001. Just Google till you find the 1 closest to you & get there. Just this guys 10 cents.
February 23rd, 2010 at 7:41 am
Unlike many Lyme suffers that suffer from muscle pain and join pain, Lyme attacked my endocrine system to a point that I would get sick from just eating two or three bites of food (I lost 57 pound within 6-7 months and now weigh 93 pounds) and on top of it all I have severe bladder pain that is constant, never goes away! The pain meds only worked for a short period of time. I had one pain med that worked for a total 3 days. Some things that I do to lower the inflammation is take inflammaquel, drink mushroom root tea, take pain meds in hope that it may work a little, take vitamin D, vitamin C, Co-Q10, along with other supplements. Yesterday, my doctor prescribed a pill that (in layman terms) will block the pain signals to my brain. He said that the L2/L3 have nerves that send messages to the brain when you have pain. I hope this works, however, it is not a final solution to the problem. It is a little unnerving to me that we are “blocking messages to my brain”. I possibly don’t understand the entirety of the treatment, but at this point I am desperate for some relief and will do anything. Living with pain day after day, minute after minute is exhausting. I work full time (in pain-which of course no one completely understands}, and I come home and crash because sitting at a computer all day long worsens the bladder pain.