Please help me help my mum.
April 15, 2011 9:08 AM Subscribe
My mother (45yo) is suffering tremendously from some sort of arthritic condition. But is there something else we should be looking for?
The onset of my mum's condition was very rapid - it reared its head rather aggressively in February, and she seems to be getting worse by the day. This month has been completely downhill. Have been back and forth between two doctors who have diagnosed her as having "possible osteoarthritis", and pelted her with a rainbow of painkillers and anti-inflammatories - naproxen, celebrex, tramadol, paracetamol, oxycontin, endone - none of which seem to be helping her in the slightest.
She has crippling pain in every joint; very noticeable swelling in the knees and feet, to the point that she has a lot of trouble standing and walking (which is more like a painful shuffle). Her hands are so sore that they keep her awake; there's no strength in them at all. She says that having her forearms held vertically while she sleeps helps considerably, but it's not very practical. Could that have something to do with circulation?
She also has a terrible sore throat (tonsillitis-sore), rib/jaw pain and persistent malaise. Her shoulders are cold all the time. May just be coincidence, but thought it might be worth mentioning.
I know YANMMD, but nobody seems to be taking her seriously. We have a consultation with a rheumatologist at the end of the month (for an official diagnosis), the earliest appointment we could make, but I really don't think this can wait. My mum is usually a very strong person, I've never seen her in this much agony - she is in tears every night, when it is at its worst, and tells me that she "is not going to make it". My grandmother died two years ago of bone and esophageal cancer, which I think plays on our minds a bit, but a recent bone scan came up clear. (Though, am wondering why nothing much has been said about it - her bones look lit up like a Christmas tree on the x-ray!)
My mum has suffered with a variety of nasty infections over the years (of the dental and sinus variety), and has asked the doctor about any possible correlation between the two, but he isn't too open minded. He also dismissed the idea of fibromyalgia. I guess my main questions are "is there anything we can do in the meantime?" and "is there something else we could test for"? I'm really worried that we might be barking up the wrong tree.
Thanks in advance, I appreciate any input on this!
The onset of my mum's condition was very rapid - it reared its head rather aggressively in February, and she seems to be getting worse by the day. This month has been completely downhill. Have been back and forth between two doctors who have diagnosed her as having "possible osteoarthritis", and pelted her with a rainbow of painkillers and anti-inflammatories - naproxen, celebrex, tramadol, paracetamol, oxycontin, endone - none of which seem to be helping her in the slightest.
She has crippling pain in every joint; very noticeable swelling in the knees and feet, to the point that she has a lot of trouble standing and walking (which is more like a painful shuffle). Her hands are so sore that they keep her awake; there's no strength in them at all. She says that having her forearms held vertically while she sleeps helps considerably, but it's not very practical. Could that have something to do with circulation?
She also has a terrible sore throat (tonsillitis-sore), rib/jaw pain and persistent malaise. Her shoulders are cold all the time. May just be coincidence, but thought it might be worth mentioning.
I know YANMMD, but nobody seems to be taking her seriously. We have a consultation with a rheumatologist at the end of the month (for an official diagnosis), the earliest appointment we could make, but I really don't think this can wait. My mum is usually a very strong person, I've never seen her in this much agony - she is in tears every night, when it is at its worst, and tells me that she "is not going to make it". My grandmother died two years ago of bone and esophageal cancer, which I think plays on our minds a bit, but a recent bone scan came up clear. (Though, am wondering why nothing much has been said about it - her bones look lit up like a Christmas tree on the x-ray!)
My mum has suffered with a variety of nasty infections over the years (of the dental and sinus variety), and has asked the doctor about any possible correlation between the two, but he isn't too open minded. He also dismissed the idea of fibromyalgia. I guess my main questions are "is there anything we can do in the meantime?" and "is there something else we could test for"? I'm really worried that we might be barking up the wrong tree.
Thanks in advance, I appreciate any input on this!
The rheumatologist is your best bet for getting a diagnosis (sorry you have to wait to see him/her, though). Besides arthritis, the rheumy will probably also run tests to check for Lupus, as many of your mum's symptoms fit that profile. In fact, what first sent me to a rheumatologist in 1989 was literally waking up one morning with burning pain in every joint, including my jaw and my toes. I'd been fine the night before and had never had any sort of pain like this before. Costochondritis, an inflammation of the cartilage in the rib cage, is a common complication of Lupus and causes rib pain. IANAD of course, but do mention all the symptoms you listed above to the rheumatologist, because they are common to many autoimmune diseases. Good luck!
posted by Oriole Adams at 9:35 AM on April 15, 2011 [3 favorites]
posted by Oriole Adams at 9:35 AM on April 15, 2011 [3 favorites]
Well, it's on my mind only because I read an article about it yesterday, but in that article, sore throat plus excruciating joint pain turned out to equal rheumatic fever.
I'm sure that is only one of a zillion possible causes of what is happening to your mother, but whatever it is, IMHO it is well worth it to be VERY aggressive in seeking medical help for serious conditions like this.
If it is really 'crippling pain in every joint' then that is already a serious, emergency-level condition IMHO. If current doctors aren't giving her the treatment she needs, then find new doctors ASAP.
Also, she needs a champion, someone to look after her and be aggressive in seeking her medical care. The doctors won't do it and likely she doesn't have the energy to do it for herself. Again, IMHO.
posted by flug at 9:35 AM on April 15, 2011 [1 favorite]
I'm sure that is only one of a zillion possible causes of what is happening to your mother, but whatever it is, IMHO it is well worth it to be VERY aggressive in seeking medical help for serious conditions like this.
If it is really 'crippling pain in every joint' then that is already a serious, emergency-level condition IMHO. If current doctors aren't giving her the treatment she needs, then find new doctors ASAP.
Also, she needs a champion, someone to look after her and be aggressive in seeking her medical care. The doctors won't do it and likely she doesn't have the energy to do it for herself. Again, IMHO.
posted by flug at 9:35 AM on April 15, 2011 [1 favorite]
Has she been tested for MS?
posted by roomthreeseventeen at 9:40 AM on April 15, 2011 [1 favorite]
posted by roomthreeseventeen at 9:40 AM on April 15, 2011 [1 favorite]
Although slightly different onset of symptoms, my father contracted a rare disease called Still's disease last year, which is kind of in-between lupus and RA.
posted by dyno04 at 9:42 AM on April 15, 2011
posted by dyno04 at 9:42 AM on April 15, 2011
If she is in that much pain, could she be admitted to the hospital for some IV anti inflammatories and pain meds while they do a full workup on her? I'd be interested in results from labs and bloodwork (there are blood tests they can do to determine inflammation in the body...I was tested for that once but I can't remember the name of the test), along with any scan they can do. My grandmother has rheumatoid arthritis (and osteoarthritis) and the rhumatoid will flare up in different joints willy nilly. However, this sounds like something systemic going on and is affecting more than just her joints. Has anyone explored the possibility of vasculitis (inflammation of the blood vessels)? While it may not be the cause of the pain, it's a symptom you don't want to just let run its course. IANAD so I'm just making guesses based on what other family members have had in the past (lupus, fibromyalgia, arthritis, vasculitis). It may trigger some questions for you to think about.
posted by MultiFaceted at 9:47 AM on April 15, 2011
posted by MultiFaceted at 9:47 AM on April 15, 2011
Response by poster: Thank you for all your replies so far! I've been calling the doctors every day asking for an earlier appointment/referral to a new rheumy, but no luck so far. MultiFaceted, I too would be very interested in what a full workup would show (as they've only tested for gout, as far as I know). My mum is very frightened by the idea of being admitted to a hospital, but I'm desperately hoping she'll change her mind and consider it, if only so she can have some relief.
posted by gruggywoof at 10:11 AM on April 15, 2011
posted by gruggywoof at 10:11 AM on April 15, 2011
If she has any problems with balance (not having to do with taking pain killers) and numbness, I would suggest also a neurologist if the rheumatologist is unable to assist.
When my aunt was going through something similiar (but not as rapid as your moms seems to be and my aunt more issues with balance and dropping things as well as the severe pain), at first they thought it was Lupus but then she was diagnosed with fibromyalgia... then rheumatoid arthritis... and finally the right diagnosis: MS (unfortunately).
Also,
I understand you mom is terrified of going to the hospital. I recently went to the ER for the first time in my life a while back because of pain which ended up being a kidney stone. I was also very very terrified but I was scared and didn't want anything further to happen to me. So I decided to brave it and go to the ER.
In my case, once I arrived, I was quickly processed, gave a urine sample and I was hooked up to an IV (didn't hurt) and given some pain meds that will worked in what seems like seconds. This took away my pain and panic and I instantly felt much safer in the hospital rather than dealing with the unknown at home. They then did my bloodwork, CT Scan, ultrasound, etc.
I would try to convince her to go to the ER and let her know that everything will be okay, you'll be with her and that you're concerned for her health. Also, ask her if dealing with this painful unknown condition is really better/less terrifying than going to the hospital. That's the option I weighed.
posted by KogeLiz at 10:37 AM on April 15, 2011 [1 favorite]
When my aunt was going through something similiar (but not as rapid as your moms seems to be and my aunt more issues with balance and dropping things as well as the severe pain), at first they thought it was Lupus but then she was diagnosed with fibromyalgia... then rheumatoid arthritis... and finally the right diagnosis: MS (unfortunately).
Also,
I understand you mom is terrified of going to the hospital. I recently went to the ER for the first time in my life a while back because of pain which ended up being a kidney stone. I was also very very terrified but I was scared and didn't want anything further to happen to me. So I decided to brave it and go to the ER.
In my case, once I arrived, I was quickly processed, gave a urine sample and I was hooked up to an IV (didn't hurt) and given some pain meds that will worked in what seems like seconds. This took away my pain and panic and I instantly felt much safer in the hospital rather than dealing with the unknown at home. They then did my bloodwork, CT Scan, ultrasound, etc.
I would try to convince her to go to the ER and let her know that everything will be okay, you'll be with her and that you're concerned for her health. Also, ask her if dealing with this painful unknown condition is really better/less terrifying than going to the hospital. That's the option I weighed.
posted by KogeLiz at 10:37 AM on April 15, 2011 [1 favorite]
Gout is another possibility. It's rarer in women, but also occurs.
posted by Mchelly at 10:38 AM on April 15, 2011 [1 favorite]
posted by Mchelly at 10:38 AM on April 15, 2011 [1 favorite]
Disclaimer: IANAD, IANYD.
The sudden onset and inflammatory nature of this suggest either an infection or an autoimmune condition. Based on the symptoms you are reporting, I think MS is unlikely. The rheumatology tack is probably the right one.
There is a nostrum given to medical students that goes, "if you hear hoofbeats, don't look for zebras." In the absence of better, more specific evidence, I would stay away from thinking the worst.
In the meantime, there is something that you can try that is low-risk and has other knock-on benefits even if it doesn't end up solving this problem: vitamin D. I think of it because 1. you have reported a February-onset condition, and 2. it is joint-related, and 3. your Mom is 45, and the 40s is about the time that the effects of chronic depletion start to show themselves.
You can check out Grassroots Health for more information.
posted by rhombus at 10:49 AM on April 15, 2011 [1 favorite]
The sudden onset and inflammatory nature of this suggest either an infection or an autoimmune condition. Based on the symptoms you are reporting, I think MS is unlikely. The rheumatology tack is probably the right one.
There is a nostrum given to medical students that goes, "if you hear hoofbeats, don't look for zebras." In the absence of better, more specific evidence, I would stay away from thinking the worst.
In the meantime, there is something that you can try that is low-risk and has other knock-on benefits even if it doesn't end up solving this problem: vitamin D. I think of it because 1. you have reported a February-onset condition, and 2. it is joint-related, and 3. your Mom is 45, and the 40s is about the time that the effects of chronic depletion start to show themselves.
You can check out Grassroots Health for more information.
posted by rhombus at 10:49 AM on April 15, 2011 [1 favorite]
When I was younger I had a weird condition that presented as rheumatic fever - but nobody really knew what it was. I was paralyzed from the pain in my joints, and admitted to the hospital where they looked me over and were like, "Huh... this sucks? Auto-immune? Maybe he die now?" And then it slowed to a dull roar, so they released me and decided I probably wasn't going to die and that more than likely I was just a whiny kid. As a preventative measure and in order to appear to be doing SOMETHING, they started giving me long-acting penicillin shots once a month. You know, just in case? From then on, my joints have just always bothered me. And I came to learn that "auto-immune" is the polite way of saying "fuck if we know what's wrong."
Years later, I broke out in a weird rash around all my joints and started getting migranes and having joint pain. And then one day, when I was eating a slice of pizza, my lips started swelling as if I were having an allergic reaction. So on a hunch, I eliminated wheat from my diet and everything improved. Significantly less joint pain, reduced inflammation from asthma, fewer colds (my tonsils and sinuses weren't swollen anymore). Fewer headaches (except when I'd accidentally eat wheat - then they'd hit me like a freight train). And things I didn't know were wrong improved drastically. (Specifically, my sleep. I had always been an exhausted person even though I could sleep 12 hours at a time. Now - 6 hours and I'm bright eyed and bushy tailed.)
I only say all of this because nobody at any point thought to check to see if I was allergic to something in my environment that could be causing this reaction. When I eventually went to my doctor and told him what happened and how I had temporarily solved the problem, he said, "Oh. Good." So I asked if we were going to do anything to, like, get a formal diagnosis. You know, science? Nope. That was pretty much all they needed to hear. They told me to keep avoiding wheat and have a happy life.
posted by jph at 10:51 AM on April 15, 2011 [1 favorite]
Years later, I broke out in a weird rash around all my joints and started getting migranes and having joint pain. And then one day, when I was eating a slice of pizza, my lips started swelling as if I were having an allergic reaction. So on a hunch, I eliminated wheat from my diet and everything improved. Significantly less joint pain, reduced inflammation from asthma, fewer colds (my tonsils and sinuses weren't swollen anymore). Fewer headaches (except when I'd accidentally eat wheat - then they'd hit me like a freight train). And things I didn't know were wrong improved drastically. (Specifically, my sleep. I had always been an exhausted person even though I could sleep 12 hours at a time. Now - 6 hours and I'm bright eyed and bushy tailed.)
I only say all of this because nobody at any point thought to check to see if I was allergic to something in my environment that could be causing this reaction. When I eventually went to my doctor and told him what happened and how I had temporarily solved the problem, he said, "Oh. Good." So I asked if we were going to do anything to, like, get a formal diagnosis. You know, science? Nope. That was pretty much all they needed to hear. They told me to keep avoiding wheat and have a happy life.
posted by jph at 10:51 AM on April 15, 2011 [1 favorite]
I've known someone else who had an arthritis-like condition that was alleviated when she cut out wheat and gluten from her diet. Might be something to look into.
Another rare possibility: are her ears red or sore? There is an autoimmune disease called relapsing polychondritis where the body for some reason starts attacking the cartilage, so every place with cartilage hurts - eg ribs, joints, ears, nose.
posted by LobsterMitten at 2:03 PM on April 15, 2011
Another rare possibility: are her ears red or sore? There is an autoimmune disease called relapsing polychondritis where the body for some reason starts attacking the cartilage, so every place with cartilage hurts - eg ribs, joints, ears, nose.
posted by LobsterMitten at 2:03 PM on April 15, 2011
Before she quits eating wheat she should get tested for Celiac disease - simple blood test. It's an autoimmune disease that can show up at any age and that can cause the symptoms you're describing although that's pretty extreme.
In her shoes I'd go to the ER of a large academic medical center - if she's crying in pain every night she shouldn't have to wait weeks for relief. I don't know anything about the Australian medical system but that seems like a reasonable place to start while waiting to get into a rheumatologist
posted by leslies at 2:38 PM on April 15, 2011
In her shoes I'd go to the ER of a large academic medical center - if she's crying in pain every night she shouldn't have to wait weeks for relief. I don't know anything about the Australian medical system but that seems like a reasonable place to start while waiting to get into a rheumatologist
posted by leslies at 2:38 PM on April 15, 2011
Has she been tested for gout? My mother-in-law had it and they found it with a simple blood test. The doctor put her on Colchicine for the pain as needed and Allopurinol for long term use. She was in a lot of pain until diagnosed.
posted by sandyp at 3:08 PM on April 15, 2011 [1 favorite]
posted by sandyp at 3:08 PM on April 15, 2011 [1 favorite]
IANAD, but for what it is worth:
The combination of things (e.g., bones and joints, swollen glands, malaise, etc.), the extent of things (e.g., 'all joints' isn't likely to be, say, gout) and the speed with which things came on suggests a disease condition that is hitting her like a ton of bricks. Among the specialists to see is an infectious disease doctor. (I think that this is a must.)
What you are describing could be many things (and the result of many things simultaneously), but it sounds an awful lot like what happens with some people with what we in the US call Lyme Disease. In the UK, I believe it is called Borreliosis. (Why is this ringing my bell, as it were? I have been having an adventure with chronic disease that presents like a virus but may have Lyme as an underlying and possibly disease-motivating problem. It's too long a story, but your mother's situation has familiar elements.)
One of the problem with doctors is that if the issue at hand does not fit into a nice little box they think they understand, they often dismiss the patient as an idiot hypochondriac as, after all, it can't be possible that they, the doctors, could be presented with something they don't understand. (I apologize for the snark.) The solution is to be persistent and change doctors if necessary. For the moment however, given the extent of her discomfort, a trip to the emergency room of a good academic medical center -- as suggested up-thread -- is probably a good idea.
Good luck! I hope your mom feels better soon!
posted by cool breeze at 3:43 PM on April 15, 2011
The combination of things (e.g., bones and joints, swollen glands, malaise, etc.), the extent of things (e.g., 'all joints' isn't likely to be, say, gout) and the speed with which things came on suggests a disease condition that is hitting her like a ton of bricks. Among the specialists to see is an infectious disease doctor. (I think that this is a must.)
What you are describing could be many things (and the result of many things simultaneously), but it sounds an awful lot like what happens with some people with what we in the US call Lyme Disease. In the UK, I believe it is called Borreliosis. (Why is this ringing my bell, as it were? I have been having an adventure with chronic disease that presents like a virus but may have Lyme as an underlying and possibly disease-motivating problem. It's too long a story, but your mother's situation has familiar elements.)
One of the problem with doctors is that if the issue at hand does not fit into a nice little box they think they understand, they often dismiss the patient as an idiot hypochondriac as, after all, it can't be possible that they, the doctors, could be presented with something they don't understand. (I apologize for the snark.) The solution is to be persistent and change doctors if necessary. For the moment however, given the extent of her discomfort, a trip to the emergency room of a good academic medical center -- as suggested up-thread -- is probably a good idea.
Good luck! I hope your mom feels better soon!
posted by cool breeze at 3:43 PM on April 15, 2011
IANAD etc. I agree with cool breeze and rhombus that this sounds the most like an infectious illness or autoimmune disorder. It's not unusual for autoimmune diseases to first present in women in their 30s or 40s.
I think you've done a great job describing her symptoms here, and it will be very helpful if you can share them with a physician. I'd suggest making a written list so that you can remember everything. Express your concerns, mention that the pain is keeping your mother awake at night, and say that you are worried that she may have an infection or autoimmune disease.
Some tests the physician might order include an RF antibody test for rheumatoid arthritis, an ANA test to screen for Lupus, VZV antibodies to screen for shingles, a urate level test to screen for gout, a CBC, and a rapid strep test. If he or she doesn't order them, you can ask about the possibility of getting them. Although I agree that she should see a rheumatologist, any physician can order these tests. I would keep the rheumatologist appointment, and make an appointment with someone who can see her sooner. If the pain is keeping her awake at night I would take her to the emergency department. The sooner you do the tests, the sooner you can get the results and help your mother feel better.
You've done a great thing asking for help for your mum. Best wishes, and I hope you find the answers you seek and your mum feels better soon.
posted by ladypants at 4:24 PM on April 15, 2011
I think you've done a great job describing her symptoms here, and it will be very helpful if you can share them with a physician. I'd suggest making a written list so that you can remember everything. Express your concerns, mention that the pain is keeping your mother awake at night, and say that you are worried that she may have an infection or autoimmune disease.
Some tests the physician might order include an RF antibody test for rheumatoid arthritis, an ANA test to screen for Lupus, VZV antibodies to screen for shingles, a urate level test to screen for gout, a CBC, and a rapid strep test. If he or she doesn't order them, you can ask about the possibility of getting them. Although I agree that she should see a rheumatologist, any physician can order these tests. I would keep the rheumatologist appointment, and make an appointment with someone who can see her sooner. If the pain is keeping her awake at night I would take her to the emergency department. The sooner you do the tests, the sooner you can get the results and help your mother feel better.
You've done a great thing asking for help for your mum. Best wishes, and I hope you find the answers you seek and your mum feels better soon.
posted by ladypants at 4:24 PM on April 15, 2011
Response by poster: Thanks again for all of your answers, and to those who contacted me through other means... it's really, really helpful, and I want to take every suggestion into account. If we hear nothing back from our GP by Monday, I think we will have to seriously look at admission to the hospital. We'll definitely keep the rheumy appointment, hopefully some further testing can be performed in the meantime.
posted by gruggywoof at 6:38 PM on April 15, 2011
posted by gruggywoof at 6:38 PM on April 15, 2011
Thirding the celiac test and possibility that this is a reaction to gluten. The symptoms you describe eerily precisely describe my own decline exactly a year ago. The onset was quick. I thought it absolutely had to be rheumatic fever because of the fever and weird joint symptoms. All tests came back clear, except my sed rate, which was off the freaking charts. Like, seriously bad. After finally getting in to the rheumatologist (after being essentially incapacitated and in excruciating pain for six weeks), I finally received a completely useless suggestion that it might be lymphoma or tuberculosis. Which....it wasn't. On a lark I decided to eliminate gluten completely. This was on a Thursday. And that Monday, after not being able to make a fist for 2 months without excruciating pain, I was able to happily make a fist. The pain, swelling and fever began to fade. I ate pizza later that week and the symptoms spiked again. And that was enough for me. My turn around sans gluten was almost as quick as the onset.
She should get tested before giving up gluten, though, as suggested above. Keep in mind, though, that the blood test is rife with false negatives.
posted by hecho de la basura at 9:04 AM on April 16, 2011
She should get tested before giving up gluten, though, as suggested above. Keep in mind, though, that the blood test is rife with false negatives.
posted by hecho de la basura at 9:04 AM on April 16, 2011
gruggywoof, IANYD, but I'm an ER doctor, and I think it's unlikely that your mom needs admission to the hospital to solve this problem. Most people don't need to be admitted to the hospital for pain control, if that's the only issue - we typically just increase the pain medication dosage until the underlying issue can be dealt with. She shouldn't have to be crying in pain on a daily basis, it sounds like it may be important to just be very clear with her physicians about the fact that her pain control is inadequate and is seriously affecting her quality of life. That alone ought to get you the attention you need, and if it doesn't, that is probably a sign she needs a different physician.
It's hard for me to tell because of the limited information available though your story and via the internet, but I just wanted to warn you so you don't show up at the ER hellbent on being admitted to the hospital. An emergency rheumatology consult is vanishingly rare, so if rheum is what she needs, going to the hospital probably won't get you that faster. And being in the hospital isn't a great place to be for other reasons too - lots of bad infections can lurk there. You don't want to be there unless you really need to be.
Conditions like what your mom is suffering from can be really tough to deal with and diagnose, so best of luck and I hope that she gets what she needs and starts feeling better soon.
p.s. Bones are supposed to light up on x-rays, that's the purpose of getting an x-ray is to light up your bones! Feel free to PM me if you need any other help deciphering medicalese, etc.
posted by treehorn+bunny at 6:02 PM on April 17, 2011
It's hard for me to tell because of the limited information available though your story and via the internet, but I just wanted to warn you so you don't show up at the ER hellbent on being admitted to the hospital. An emergency rheumatology consult is vanishingly rare, so if rheum is what she needs, going to the hospital probably won't get you that faster. And being in the hospital isn't a great place to be for other reasons too - lots of bad infections can lurk there. You don't want to be there unless you really need to be.
Conditions like what your mom is suffering from can be really tough to deal with and diagnose, so best of luck and I hope that she gets what she needs and starts feeling better soon.
p.s. Bones are supposed to light up on x-rays, that's the purpose of getting an x-ray is to light up your bones! Feel free to PM me if you need any other help deciphering medicalese, etc.
posted by treehorn+bunny at 6:02 PM on April 17, 2011
This thread is closed to new comments.
posted by k5.user at 9:18 AM on April 15, 2011