I have idiopathic peripheral pain, and my doctors don't know why

March 16, 2014 1:59 PM

First, YANMD and I know this. Over the last two years, I've lost count of how many doctors and specialists I've seen to try to figure out why I have a weird chronic pain in my arms and legs. They're completely stumped, so I thought I'd query the hive-mind to see if any of you fine folk have either had or heard of a similar condition. Medical details inside.

I'll try to make this as concise as possible:

- January of 2012, my chest started to feel sore. I was in the middle of the 100 push-up challenge, so I figured I'd just overdone it.

- For the next two months, the vague achey feeling migrated from my chest to both arms (upper and fore). I went to my primary doctor and he was stumped. He suggested I go gluten-free and try to get more rest.

- In April of that year, I had an appendicitis and had my appendix removed. After recovery, the pain in my arms remained, but migrated to my legs as well (calves and hips), I saw my surgeon and he gave me an ultrasound to rule out a surgery-related blood clot. Everything looked fine, but the pain remained.

- Saw my primary again after being gluten-free for several months. Still no change. He screened me for all sorts of auto-immune diseases, but everything came back clean. He suggested Savella, but I declined.

- Tried yoga and meditation, and saw little to no improvement. Went back to my doc and asked if he could send me to a Rheumatologist. The Rheumy screened me for Lyme's disease (Eliza and Western Blot), ran a panel checking for vitamin deficiencies, and tested the classic Fibromyalgia points. I was negative for Lyme's, negative for Fibro, but my Vit D was low. Took supplement doses to get back in the normal range, but no change in pain.

- Went to acupuncturists and massage therapists. No relief.

- In early 2013, finally bit the bullet and started taking Cymbalta. The pain was dialed down and I was able to go about my day without constantly focusing on my aching limbs.

- Went to a new doctor in the hopes that he'd have a better idea than my primary doc. He didn't, but he sent me to a Neurologist.

- The Neurologist ran me through a battery of tests to gauge my nerve health. Everything came back clean. He suggested that I had Fibro, but was at a loss when I told him that I don't suffer from any of the classic symptoms (other than pain), and that the Rheumatologist had said it definitely wasn't Fibro.

- The last specialist I saw was in mid-2013. Since then, I've just been treating my symptoms with Cymbalta, which I'd love to stop taking.

As for my basic lifestyle, I have no problems sleeping, I'm generally active, I drink a ton of water every day, I eat fresh home-cooked meals 5-6 times a week, and I drink green smoothies nearly every morning. I'm a non-smoker, but I do drink on occasion. I poop regularly and my pee is typically crystal-clear. I suffer from seasonal allergies, but that's the extent of any health-related problems that I have beyond the constant pain (when unmedicated).

As for the pain, it was migratory and constant. My calves would ache one day, then it would move into my upper arms, or maybe into my forearms. My hips might affect me one day too. The muscles were never sore to the touch, but the pain felt like it was coming from deep within the tissue. I tried every alternative medicine under the sun, but nothing worked. Prolonged periods of exercise don't lessen the pain either. When unmedicated, I would be prone to flare ups of pain everywhere every once in awhile. Compression sleeves on the calves and arms did help a little.

Phew. That's about it. I've been dealing with this for just over two years, and this is the first time I've turned to the internet for answers. I'm not looking for a definitive diagnosis -- after all YANMD -- but if you've suffered something similar, or known someone who has, I'd be very grateful to hear your story or advice.

Thank you.

posted by bjork24 to Health & Fitness (31 answers total)

I have no answers, but this guy may be of some help to you.
posted by feckless fecal fear mongering at 2:18 PM on March 16, 2014

Savella (which a doctor recommended and you declined) and Cymbalta (which now works for you somewhat but you don't want to take) are both antidepressants. Why are you eager to stop the one thing that works?
posted by Houstonian at 2:24 PM on March 16, 2014 [3 favorites]

Also, have you considered talking to a therapist, if you don't have one already? If an antidepressant is helping relieve the pain, is it possible that it's a psychosomatic thing?
posted by feckless fecal fear mongering at 2:25 PM on March 16, 2014

IANMD - but one possible (non-mainstream, controversial) cause of migratory pain is TMS. I don't like to bring it up on AskMes about pain because it is sort of "woo" sounding and may not be applicable in your case. You can read one of Dr. Sarno's books and find out for yourself if it applies.

(I used to read a wonderful website called TarPit Yoga that had lots of information about TMS, but I recently visited it again and found most of the information had been removed. :( )
posted by joseph conrad is fully awesome at 2:34 PM on March 16, 2014

Guys, it's important to note that while Cymbalta was developed for depression initially, it has been used for years now, off-label, to treat chronic musculoskeletal pain. It's prescription doesn't mean the OP's problems are all in her head.

OP, I have occasional unexplained nerve pain down my right leg and I'm beginning to wonder if it's postural; have you seen a physio about ensuring you are in good alignment and that you aren't unduly straining any area of your body?
posted by HoteDoge at 2:37 PM on March 16, 2014 [7 favorites]

Response by poster: Thanks for mentioning that, HoteDoge. My doctor never considered depression or anxiety to be the issue. His prescription of Savella and Cymbalta was strictly for their pain-killing ability.
posted by bjork24 at 2:49 PM on March 16, 2014

The pattern your pain takes kind of reminds me of what it sounds like when people have muscle breakdown due to statin use. But you haven't been taking statins. This list of causes of muscle aches has some other conditions that it doesn't sound like you've been screened for, though. Have any of the doctors mentioned any of those as a possibility?
posted by limeonaire at 2:50 PM on March 16, 2014

Have you been to a podiatrist? I wonder if something is off with your gait and that's causing pain elsewhere.
posted by These Birds of a Feather at 3:02 PM on March 16, 2014

If you have a weakness in your back, you may not have back pain but all of your other compensating muscles get tired and achy. My bad back sends pain through my legs and sometimes down to my ankle almost more than my back. It's because those other muscles compensate, overwork, get too tight, and cause all kinds of other problems. Might be worth checking in with a really good physical therapist that could double check you for any weakness. My PT easily found several exercises for me that I thought were actually impossible - but it was just pointing out how some of my muscles were not working at all. If it is a weakness, a PT would know in one appointment.
posted by littlewater at 3:04 PM on March 16, 2014

How do you work? Do you work at a desk? How many hours do you work? How active are you throughout the day? Is there a repetitive thing you do which may be causing this?

Go see a chiro perhaps. I'm thinking this is something to do with a "pinched nerve."
posted by KokuRyu at 3:07 PM on March 16, 2014

I'm guessing the rheumatologist and/or neurologist tested for RSD? The fact that the pain moved after your surgery is an indicator for that, from what I've read. Surgery can cause or worsen RSD.
posted by msbadcrumble at 3:14 PM on March 16, 2014 [1 favorite]

Response by poster: Thank you for the replies so far. I'll try to answer some of the questions people have asked.

joseph conrad is fully awesome - I've never looked into TMS, and I don't think any of my doctors or specialists have considered it. I'll do some reasearch.

limeonaire - I can't say that everyone of those causes of muscle pain were tested for, but I can say that my screenings have been numerous and exhaustive.

These Birds of a Feather - I haven't been to a podiatrist, but I tried using inserts for low arches and foot bands for Plantar fasciitis. Neither helped much.

littlewater and KokuRyu - I haven't been to a chiro, because, frankly, I'm a little afraid of them. I have an acquaintance who went to one and came out in worse condition than when he went in. I work from home at a standing desk, and I try to alternate positions throughout the day. I also have to go up and down a flight of stairs to refill my water bottle, which I do 4-5 times a day. When the weather allows, I take my kids for a 30-45 minute walk through the neighborhood. I could definitely stand to be more active, but I think I'm doing okay.

msbadcrumble - I do remember the rheumatologist mention RSD, so I assume he screened for it.

FWIW - I forgot to mention that I am a 33 year old male.
posted by bjork24 at 3:36 PM on March 16, 2014

Response by poster: Also, Houstonian, I don't want to be on Cymbalta because 1) I don't like the idea of altering my brain's chemical balance with medication, 2) who knows what the longterm effects of the medication are, and 3) it's a helluva drug. Coming off of it is nearly as bad as the pain it was designed to treat!
posted by bjork24 at 3:48 PM on March 16, 2014

I sense that even though you know that snris like cymbalta and savella are prescribed primarily for pain, you feel there's a stigma attached to drugs in that class and that's part of why you want to avoid them even though cymbalta is helping you. Cymbalta can be a great drug for people like me with debilitating and chronic nerve pain. You're describing constant pain that interferes with your day to day life. There are drugs that can help you.

Since Cymbalta helps a little I bet this is a problem for a neurologist, and since it helps a little another drug in that class might help even more. Just a glance at Savella suggests that it targets muscle pain, not neuropathic pain. You might reconsider listening to the doctor and giving Savella a try since you're describing muscle pain more than neuropathic pain.

Now a neurologist might never find the cause or a medicine that works. I have seen neurologists who had really bad theories and treatment plans that I obediently followed. With my long history of dealing with neurologists with crazy plans, I think Savella sounds like it is worth a shot.

So why not see a couple of more neurologists-- not physiatrists (rehab med) yet and not a pain doc. Ask someone to order for you a cervical, lumbar, and thoracic MRI. My wag is that you pinged a weird nerve during your pushup challenge even though the pain manifests itself as muscle soreness. The migratory thing sounds like a nerve thing. Of course, I could be very very be wrong. It is the internet!

I am not a doctor. I am just a random person with an interest in chronic pain.
posted by vincele at 4:11 PM on March 16, 2014 [1 favorite]

I have an inflammatory condition. I used to be in chronic, extreme pain. Pain meds did little for it. It frequently impacts joints in its later stages. It also makes one prone to diabetes (not type one and not type two, but "CF related Diabetes").

I did a lot of reading and tried a lot of things. A quick summary of 13+ years of working on my issue: High acidity promotes inflammation, inflammation promotes infection (and diabetes is known to be associated with inflammation -- I suspect there may be an infectious component).

I am mentioning this in part because you mentioned appendicitis, which is a serious infection, and joint pain. My experience was that resolving the high acidity that my condition promotes reduced inflammation and that reduced infection. My joint pain cleared up. My blood sugar problems cleared up. A lot of other problems cleared up.

I am also mentioning it because there are plenty of books out there about anti-inflammatory diets and the fact that the typical American diet is very pro-inflammatory. I am suggesting you may have some kind of infection that will never be recognized and which is rooted in inflammation which you may be able to control with dietary and lifestyle changes. I have come to believe that a lot of joint issues like arthritis have an infectious component. Treating myself for infection cleared up a whole lot of things that are not currently viewed as infection.

Best of luck.
posted by Michele in California at 4:27 PM on March 16, 2014 [1 favorite]

A chiropractor and physical therapist are very different. Many physical therapists have PhDs. Most are seen only by referral from a sports medicine doc / orthopedist.

For me, I saw the orthopedist and they said that the physical therapist was the one that would help me, and that shots/surgery/pills were a secondary route if the physical therapist failed to resolve the pain through giving me exercise plans.
If you want to stay away from pills, and if it is a nerve pinch or muscle imbalance, PT is where you will get closest to solving it.
I do think there is a place for a chiropractor but I think you need a really really smart physical therapist.
posted by littlewater at 4:45 PM on March 16, 2014 [1 favorite]

I have no idea what could be causing your arm and leg pain, but I want to mention that I've been taking amitriptyline (Elavil) for about a month for vulvodynia. It's an idiopathic pain disorder, and perhaps what helps it could help with whatever you're suffering from.

Yes, amitriptyline is an anti-depressant. It is prescribed for vulvodynia at a dose (25mg/day), well below the dosage for treating depression (starting at 75mg/day). It's been in use since 1961 and I would say the effects are well-known by now (I understand your hesitation about side effects; I prefer to take older medications when possible because their long term effects are better understood.) Amitriptyline is rarely prescribed anymore for depression since the newer SSRIs are so much more effective. Nowadays it is prescribed for pain and insomnia. The only side effect I've experienced is drowsiness and that is beginning to subside.

My doctor suggested gabapentin as a second option if the amitriptyline didn't help. If it makes you feel better, gabapentin was originally developed for epilepsy rather than depression.

If you do continue to take Cymbalta or another anti-depressant for your pain, I think it will be helpful to think of them as drugs for your nerves rather than your brain chemistry.

Of course, I understand that you want a definitive diagnosis and for the whole thing to go away rather than be managed. Best of luck.
posted by fozzie_bear at 4:49 PM on March 16, 2014 [2 favorites]

I had really bad joint pain until I had my gallbladder out, might be worth ruling out that something else like that is aggravating your joints.
posted by meepmeow at 5:03 PM on March 16, 2014

I assume you were tested for B12 serum levels, and Vitamin D3. If the values for either were borderline (i.e. within range, but low), supplementation might still help. B12 deficiency in particular may not show low serum levels until symptoms have already begun. The lab that my doctor uses actually prints a notice next to reported scores to the effect that any value under 400 might still be accompanied by neuropsychiatric symptoms.
posted by blue suede stockings at 5:25 PM on March 16, 2014 [5 favorites]

Have you not seen a physical therapist at all? There are PT experts who continue to do medical research along with maintaining a practice. Make a list of the top three therapists (not just practices) in your city and go try them all out. One may be attached to a rehab clinic or hospital. Call local orthapedic doctors and ask who they recommend. Google "local sports team name" + physical therapist and see who comes up. Meet them all, pick one, work with them for several sessions and see if you don't start to feel a bit better.

It's a bit strange that nobody has had you examined and treated by a PT yet. There are many weird pelvic / spinal / arm / hip alignment issues which could be causing ongoing pain and numbness.

In the meantime, Pilates is amazing for core muscles and alignment. It sounds like you're reasonably active despite this pain so perhaps it's a moot point, but it fixed a bunch of my weird aches and pains from being weak in certain core muscles.
posted by barnone at 5:32 PM on March 16, 2014

I came in to say RSD as well (I believe it's now called Complex Regional Pain Syndrome). A friend of mine has it, and what she describes sounds an awful lot like what you're describing.
posted by woodvine at 5:38 PM on March 16, 2014

blue suede stockings makes a good suggestion, as do so many here.

I chased pain and neuropathy for years. When I finally started taking B12 shots (some people need shots, some do well with sublingual tablets), my life was changed. A naturopath caught it when no MD could. My acupuncturist helped with healing once I knew what was wrong.

I'm sorry you are having such a rough time.
posted by mamabear at 5:41 PM on March 16, 2014 [1 favorite]

You might find this blog useful: How to Cope With Pain. It is run by a pain management psychiatrist. I like her breathing and relaxation exercises, and she has a lot of very good practical advice.
posted by vincele at 5:47 PM on March 16, 2014

My Vitamin D was low also.... 31 in the range. I take 10,000 units of D3 a day. If I don't, I get aches and pains. So how much are you taking?

When my husband was low, he was prescribed 50,000 units a week, plus 2,500 a day.

Frankly, 1,000 a day or whatever doesn't do it for me. I live in the North. I can't get sunshine. I do get it in the summer, but October 1st, I am taking extra D. The OD amount is way higher than what I take.

FWIW, I also had weird chest pains, aches in my legs, aches all over. My husband also had B12 and D deficiency at the same time. Not fun.
posted by Marie Mon Dieu at 7:05 PM on March 16, 2014 [1 favorite]

I'm just throwing this out there as a possibility, but are your green smoothies made with the same ingredients every day? And do they contain kale and other cruciferous vegetables? And do you typically avoid salt?

The reason I bring this forth is that there has been some small amount of research done that links high consumption of cruciferous vegetables with hypothyroidism. This typically only occurrs when there is an iodine deficiency, but most iodine comes from table salt in North America. If you eat seaweed or other natural sources of iodine, you are probably fine.

Hypothyroidism includes symptoms like muscle aches and stiff/sore joints and tends to come on gradually, over the course of years. It may be worth looking into?
posted by valoius at 7:53 PM on March 16, 2014 [2 favorites]

No good ideas about what's going on, but I take an off label meds for fibro pain called Low Dose Naltrexone (LDN). Exactly how it works for pain isn't known but one hypothesis is that it increases the body's production of endorphins which then reduces pain. It's off label bc it's an old drug (originally used in large doses, 50mg, for opiate addiction) that's off patent so no interest from drug companies in paying for trials, but there's at least one study (out of Stanford I believe) testing it's use for fibro.

For me it was like turning down the volume of my pain, it didn't disappear, but it helped. The benefits are that it has very low/mild side effects and there's no addiction or withdrawal. It's also cheap and since it's such a small dose (typically no more than 5mg, and I only take .5mg) of med approved for daily use at 50mg a day, I think open minded docs are less likely to balk at a trial (very low risk).

One caveat, it effectively will block the action of opiate based pain meds, so if they are part of your current treatment protocol, its a little more complicated.

There's a fair amount of stuff online about it, a LOT of hope from some rather desperate communities that don't have a lot of good treatment options (fibro, MS, CFS). It's no miracle cure for anything IMO, but I think it can help some people. It definitely helped me. Memail me if you want more info. And best of luck. Being in constant pain for years is incredibly difficult.
posted by pennypiper at 7:59 PM on March 16, 2014

How long have you been using a standing desk? Does it pre-date the pain? How much water are you drinking? You mention refilling your bottle 4-5 times per day how big is the bottle? You also said your pee is crystal clear, have you had your sodium levels checked? Low sodium could cause muscle aches.
posted by missmagenta at 4:51 AM on March 17, 2014

Marijuana seems to help a lot of people with chronic pain.
posted by mareli at 6:19 AM on March 17, 2014

Response by poster: Thanks for all the advice and anecdotes, everyone. I have a lot of stuff to discuss with my doctor when I see him next.
posted by bjork24 at 8:16 AM on March 17, 2014

I would suggest testing to see if you have any vitamin or mineral deficiencies.
posted by MexicanYenta at 11:16 PM on March 17, 2014

Went through a similar set of circumstances to you.
In the end, it turned out to be psoriatic arthritis, affecting the tendons (enthesitis).
[I only had small mild patches of psoriasis, under the scalp, behind the ears, etc.]
It was (a) symmetrical; (b) often able to affect the ribcage as much as the limbs; (c) often looked like plantar fasciitis; (c) did not necessarily directly affect the joints, but the areas on either side of the joints where tendons implant or are sheathed.
I take sulfasalazine under care of a rheumatologist, and am mostly good now.
The other benefit is my psoriasis is better too.
posted by blue_wardrobe at 3:28 PM on March 18, 2014