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Went to a rheumatologist for joint paint that I've been having for over a year now. She said the large joint pain was due to Cipro (which i had been on 6x in 2 years for UTIs and it has a black box warning), but seemed to dismiss the small joint pain (fingers, thumbs, elbows) as dysautonomia. I was diagnosed with dysautonomia in 2008 and I've never heard any physician tell me about pain associated with it. The rheumatologist said that nerve pain (shooting, searing) is common with dysautonomia. I don't have that type of pain for one and i question her diagnosis and if she was just being dismissive. She further said my pain wasn't that bad if i wasn't taking meds (I've been told by several physicians that i have a high pain tolerance and b/c i can't swallow pills or food b/c of the dysautonomia and have odd scary reactions, i just use alternative things like heat, ice pack, etc,). She asked me at the end if i wanted meds like Lyrica or wanted to 'suck it up.' Curious if others have joint pain and if so what it feels like or what others have been told about pain with dysautonomia. Thanks!

This is happening to me right now. I was on Cipro 4x last year and got joint pain. While the rheumatologist thinks its part of the dysautonomia citing neuropathic pain something or other, i only had 3 shooting pains and the rest are all chronic achiness. This has been going on for 9 months w/out full resolve of the symptoms--got up to 11 joints. I'm so glad this article came out b/c my endocrinologist, urologist and primary all don't think its the Cipro, while urgent care and pulmonologist do. Thanks for posting!

I'm a chronic insomniac--haven't slept thought the night for over 30 years. Can't fall asleep and once I do, I'm up several times and sometimes for several hours at a time. Sometimes I just get 2-3 hours of sleep, sometimes 5, one in a very great while 7. Then I do the happy dance. I haven't found anything helpful (Melatonin, chamomile, deep breathing, warm bath, counting sheep, reading, crossword puzzles, weighted blanket, sound machine, ear plugs, etc. etc. etc.) other than like Katybug said, putting on some show I've watched a million times. Thanks for the heads up on Alpha Delta Syndrome--I haven't heard of that before and will look into that. I've been reluctant to do a sleep study b/c the doctors that believe in dysautonomia blame everything on that and the ones that don't blame it on anxiety. I don't think I have anxiety except as related to the frustration regarding this diagnosis and the lack of professional help.

Thanks everyone. I went to the cardiologist today. He didn't think anything was emergent (but today my heart rate was back to 60) so I'm set up for an echo, stress test and 30 day monitor next week. He said there is some type of diagnosis where your heart rate drops and you can't get it up again even w/exercise, caffeine, etc., but mine usually goes back up w/some effort, just wasn't this week.

I'm glad you found a lead to follow up on. I have frequent UTI's--like 6 or more a year. I have been trying an over-the-counter supplement called D-Mannose that coats the bladder and helps to prevent UTIs. It has one of the same ingredients that cranberry pills do so I'm not sure if it would be an option for your daughter, but just thought I'd mention it. It tends to only work on e coli infections and despite those being the most common cause of UTIs, i rarely have that so it doesn't work as well for me as i had hoped.

I always have very low body temp--96 at best. Sometimes i can be very ill and not have a fever and then doctors think I'm not that ill but cultures come back positive. However, i have also had times where I get a fever and then I actually feel somewhat happy that my body responded normally and is trying to fight it off. Last year I got the flu and had a fever for 9 days and was off work for 15. Crazy long time. How are you feeling? Were you spared from getting the flu?

I have a low heart rate often. It seems to hit frequently at the grocery store so I have to go at un-populated times and run through the aisles to keep it up so I don't faint. Last week it was 53 and it skipped a lot for 4 hours. Beat 3 times then skipped, beat 3 times then skipped. The next day I ended up with a kidney infection so I assume that was my dysautonomia alerting me that something was wrong but it didn't know how to respond appropriately. However, then yesterday afternoon it was 51. I ran up and down the stairs and it stayed at 51. I had brain fog and a headache. When I finally got my heart rate back up to 64, the headache went away and so did the brain fog. Wondering now if this is normal for dysautonomia or if i need to consult my primary or my cardiologist? It sounds like (from other posts) that an asymptomatic low heart rate is okay and nothing to worry about. I also don't want to overreact. Also wondering if others with dysautonomia feel their bodies either overreact to things or react oddly or opposite--i.e. when I am hyperthyroid I can sleep 8 hours and don't have diarrhea.

You can be having bladder spasms and you can also have cystitis which feels like a UTI but it is not bacteria related and that is made worse by caffeine, spicy foods, and other irritants. But even though you are on a broad spectrum antibiotic Cipro, it does not treat all strains and a culture is needed. If you feel like the infection is going away but the spasms are not you can ask for Pyridium which helps w/the pain and swelling. One of the biggest symptoms of my dysautonomia is bladder retention and as of 9 years ago I got to the point now where I could not urinate w/out the use of a catheter so I get frequent UTIs--every 4-6 weeks, then on antibiotics for 14 days, then it starts up again within 2-4 weeks. Some have been resistant and I've had to take two antibiotics at a time or take them for 4 weeks straight. So far i haven't even needed IV's when the infections spreads to my kidneys:), but its been brought up many times. I also take 3 things to minimize infections (makes the bladder more acidic and less likely to hold on to bacteria) and spread them out through the day which has helped--Vit C with breakfast, Cranberry pills at lunch and D-Mannose at dinner. Sometimes i do a second D-Mannose at bedtime.

I don't have answers to your questions but I think I stayed at the Holiday Inn and it was actually connected to Mayo by a series of tunnels and walkways. It was actually quite cool b/c I did not have to ever leave. They had food courts, stores and restaurants connected. I went in Nov and again in Dec and it was very cold and snowy there so i appreciated just navigating inside to get everywhere. I'm not sure where the Kahler hotel is, but just thought I'd let you know this, especially if you will be in a wheelchair. Convenience is of utmost importance. I could also just go back to my room to rest in between appts b/c sometimes they were back to back and some days I might have one at 8 a.m, then not another one until 2 p.m. THey are also used to dealing with very seriously ill people so I'm sure they can accommodate you. For what it's worth, I also went in with a near-fatal cortisol level (very low) and they did not admit me.

Good to know. It sounds interesting. I was last at Mayo in 2009--had to go twice to get everything in. They had some trickiness with me too b/c I have dysautonomia, not POTS. From my understanding is POTS is more common and some people with POTS also have dysautonomia. Good luck with your appt. I sure hope they help provide you with answers. One thing I would recommend is to try to get referrals from them when you leave. I'm so hoping this part of the program changed b/c I was sent home to find a doctor that knew about dysautonomia. Hence, how I ended up at Northwestern and University of Chicago, and some other 'top' places. Needless to say, that was 6 years ago and i still don't have a solid neurologist, urologist, endocrinologist, gastroenterologist, or primary. My ob/gyn is the only one that seems to really get it (and my pulmonologist is good) and I think that is because one of her friend's (also a physician) daughters has dysautonomia so she has some experience that way.

Maybe things have changed since I went to Mayo in Rochester, but at that time they had me do a forced breathing test, not a deep breathing test. Sort of replicating what would happen if i was doing nothing and then exercising. The most helpful test for me at Mayo was the sweat test. I've had this done at Northwestern Memorial Hospital and somewhere else and Mayo's was much more advanced--they douse your naked body with gold powder, put you in an pressure cooker of sorts and then the powder turns purple where you sweat. Other hospitals juts do a test on your wrist and ankle w/a sensory of some sort. I seem to sweat there but Mayo kept me in the cooker twice as long as indicated and doused me a second time in some spots b/c i did not sweat on my forehead or feet. I also want to point out that part of dysautonomia is the change of system function from day-to-day or even hour-to-hour. I had the tilt table done at Mayo and it was fine and then had it done a few months later at Northwestern and it was terrible. Its important to do several different kinds of tests and even the same test a few times to confirm the diagnosis.

I agree about seeing a rheumatologist and unfortunately my primary doesn't think i need to see one and hence, won't make the referral. I've asked my urologist to make the referral (b/c she's the one that prescribed the Cipro) and she won't make the referral either, saying its my primary's responsibility. I've called some rheumatologists on my own to no avail, they all want a direct referral. I have read that even if it is the Cipro, that can cause permanent damage so I am worried about this. I am seeing my endocrinologist next week...maybe she'll be willing to refer me. Very frustrating. On a positive note, things are improving with Advil and not stressing the joints--not exercising or doing anything else to stress them.

I was diagnosed with dysautonomia in 2008. Also have small distal fiber neuropathy, hypothyroidism, asthma, factor five leiden, endometriosis, etc. etc. etc. About 10 weeks ago I thought i injured my shoulder exercising. Then I thought i hurt my foot (dog stepped on it). Then nearly every few days another joint (or maybe bone or muscle, not sure) kicked in (some other ones improving some not) and I'm now up to 11 sore joints. My primary took blood and said it is not rheumatoid arthritis. There is no obvious swelling and they are not the pressure points for fibromyalgia. I also got off my thyroid meds abruptly b/c i suddenly turned hyperthyroid and usually you are never supposed to go off them once you start so i blamed it on that. Then i thought it might be a reaction to Cipro b/c i was on that for a UTI twice in the last six months and at the time the initial pain started. Just wondering if this could just be part of a dysautonomia flare of some sort? The doctors once again don't seem to feel that exploring this further for a cause is worth it and just want to prescribe steroids and only b/c its to the point where i am actually having to hold my arm w/my opposite hand when moving, walking, etc. B/c its 11 joints i don't think its tendinitis unless of course that darn Cipro caused it--it does have a black box warning for tendon ruptures. I'm also concerned that taking the steroids is only going to mask the pain and not really treat the underlying issue. Any suggestions or ideas?

I don't typically get fevers when ill (i blame this on the dysatuonomia) and my temp is normally low 96.7. However, it definitely changes in a/c and or heat or even when its bitterly cold out. I can get hypothermia and heat stroke very easily. I do have temperature regulation issues as part of my dysautonomia and I don't/can't sweat (except when I have hot flashes, which is very odd and curious to me).

Muscle weakness is also a symptom of hypothyroidism. I never had muscle weakness w/my dysautonomia but then started having some to the point that I had trouble walking up the stairs or would have to sit on the top stair to rest before moving on and they determined that I had hypothyroidism. This started many years after my dysautonomia diagnosis.

Interesting question. I have no idea and no doctors ever told me and I never asked them--maybe I should? I always ask what is causing the dysautonomia and how do i prevent that from getting worse and they have no answers. Although I originally thought that the symptoms were the dysautonomia--and so wondered how to not make my bowel completely shut down or my throat completely not be able to have motility to swallow. I've only ever heard of diabetes causing neuropathy but i don't have diabetes (blood sugar is on the low side) and no one in my family does either. DO you know what is causing yours?

Thanks for sharing--I haven't heard that before. I have small distal fiber neuropathy and have not been diagnosed w/POTS yet, they just put orthostatic intolerance on my chart w/dysautonomia. I was diagnosed in 2008 and the neuropathy not only affects my legs, but my organs too--bowel, bladder, and esophagus. While the esophagus improves periodically so i can tolerate some soft, non-pureed food, the bowel, bladder and legs have not seen any improvements over these 8 years. They say our bodies sort of go through a transition of sorts every 7 years. It's been 8 now so I'm assuming at least for me that I'll never be able to defecate, urinate, or swallow w/out assisted technology, meds, etc. On the other hand, b/c I have distal fiber neuropathy, that means it is at the end of the nerve and it has not progrossed--i.e. going further along the nerve path, which is a good sign. I'm interested in hearing what others have to say about this.

Some people find allergy-type meds fatiguing--Benadryl, Zyrtec, Singulair, etc., although some people have the opposite effects. Some people find lilac or lavender soothing and they have massage lotions essential oils in lilac or lavender and even pillow sprays. Neurontin has also been effective in some for sleep. I have had insomnia for 30 years. I just try to 'chill' and know that for a few months I may only sleep 2-3 hours and then I'll have a few weeks where i might sleep 5 hours and the a rare 7, and then back to my 2-3 hours. I try not to stress b/c I haven't found any solutions so its something I can't control. All my doctors are not concerned, they just say "That's your dysautonomia" and "You won't die from not sleeping." But, I still worry some and wonder if they are just dismissive at times b/c they are stumped or it hurts their ego that they can't find an answer. In fact, my thyroid meds got out of wack after I had the flu and i was hyperthyroid for 4 months--got down to 85 pounds. No one realized it b/c the 140 heart rate was just blamed on the dysautonomia (i normally have a 58 heart rate). The major symptom of hyperthyroid besides weight loss is insomnia. Guess what. I was actually sleeping 8 hours. It was quite nice and I felt normal. Even when i had mono i only slept 4 which is why it took a long time to figure out that diagnosis. The one thing that works for me once in awhile is forcing myself to stay awake all night long, then sleeping that day (even if only a an hour), then keeping myself up another day and a half to go to bed the following night, to try to reset the clock so to speak. Sometimes I try sleeping somewhere else--kitchen floor, hallway, closet, etc., and even if it doesn't work at promoting sleep, its nice to get different scenery. I know how frustrating it is, especially when you are only getting one hour and with your CFS and fibro! I think its wise to get in to endocrinology. Have you tried a sleep study to see if there is anything they can pinpoint?