Rickety feeling in joints and spine when I move (shoulder, hip, neck, ankle)

[Penelopesmom7]

Hi everyone,

I’m hoping someone can help me out as to what in the world it is I might be dealing with here, so here goes:

All h*** broke loose inside my body when my daughter was born. Six days after I gave birth to her, I was rushed via ambulance to the hospital and treated for postpartum preeclampsia. Then, I continued to feel horrible..I had tachycardia, my pulse pressure was super narrow (very high diastolic reading), lightheaded, dizzy, and pretty much always on the verge of passing out and/or dying (or so it felt). I noticed every time I stood up, my heart rate would sky rocket. So after like 9 trips to the ER and countless looks of disbelief from doctors, nurses and even family members, one doctor mentioned I could have POTS. And then (after researching it), it all made sense.  I did take 2 tilt table tests a few months after, and they came back negative. But I took an ANSAR test, and the results showed I do have an autonomic dysfunction (something about sympathetic withdrawal). 

So I was put on metropolol, and it’s really seemed to help as far as my heart rate goes. I’m able to be upright now...there was a good two-three weeks where I was literally unable to sit up. It was awful. Awful is an understatement..especially having a new baby to care for. Downright traumatizing. 

Now my my heart rate is just all over the place. It’ll go from 50 something (even when standing) to 110 to 70. Just bounces all around. 

But now, thank God, I’m able to be a lot more functional (6 months after her birth). But I still have super weird symptoms and I have no idea if it’s related to this new illness. I notice when I move any body part, it’s not a smooth, seamless movement...it’s rickety and shaky. Not the movement itself, but my joint where the movement is coming from. I think it’s the joint. For instance, when I go to reach for a spoon, my shoulder area trembles. When I lift leg, my spine shakes. It also feels like my spine weighs 1,000 pounds and like gravity is pushing it down. When I lift my neck, it shakes. I know it sounds crazy and it probably doesn’t make any sense, but I’ve had no luck figuring out what this could be or how to describe it in a way that a doctor can understand/help me/ give me a diagnosis.

I’m honestly terrified it’ll only get worse and it could be multiple system atrophy (I had weird tingling sensations and was unable to completely empty my bladder for a few days). The only thing that makes me think it’s not is the fact everything happened after my daughter was born and that I’m only 29.

Does this sound like POTS? Or is it something else? 

Thank you!

[Pistol]

Hi - it is possible that what you are feeling is simply the result of the combination of giving birth ( shifting of the joints ) and being out of shape from being inactive for so long. Anytime people with dysautonomia are unable to be upright or even sit up it causes deconditioning: we have trouble standing, sitting or even breathing. It is very good that the metoprolol is helping. You should SLOWLY start to do more - but not as in doing more for the baby: doing mild exercises for your body to get used to being normal again. I know of several women who had similar problems after giving birth - it got better over time in their case. --- The muscle issues might just be from the deconditioning. I am not a doctor and I am not diagnosing you - but we CAN develop POTS symptoms after birth ( or even during pregnancy ) and it gets better with proper reconditioning. The feeling you describe about your spine feeling like a 1000 pounds sounds like something I feel after a flare when I had  to be passive for too long. If both TTTs were OK and you respond well to Metoprolol - maybe it is possible for you to improve with slow and steady increase in exercise?

[Penelopesmom7]

Thank you Pistol..i’m actually signing up for a gym next week and am hoping to see continued improvement. But besides that, that shaking sensation is not just in my pelvic area, but almost everywhere (noticeable with movement), which is what makes me wonder what exactly to attribute it to versus just chalking it up to the birth process. Thank you for your insight! I just really, really hope whatever this is goes away as quickly as it seemed to come on. 

[StayAtHomeMom]

I don't have those symptoms, but I would suggest seeing a rheumatologist or neurologist. Preferably someone who knows about dysautonomia. Or at least willing to learn. Has a cardiologist checked out your heart yet? I hope you feel better soon. And congratulations on your first baby. 

[Pistol]

@Penelopesmom7 - what might be helpful is to get evaluated by a physical therapist. Your doc can refer you ( if you need a referral ). They will be able to run you through an assessment and should be able to pin point what is causing this. 

[Guest KiminOrlando]

I would see a neuro or Rheumatologist to get an assessment first. They will refer you to PT after they make sure nothing medical is going on. Hopefully, all that you need is some PT, but I wouldn't trust a PT to make a medical evaluation unless you have no money to get a medical opinion. 

[Penelopesmom7]

@StayAtHomeMom thank you  yes, I’ve seen multiple cardiologists and structurally, my heart is fine.

I was looking up what autonomic conditions occur because of pregnancy and the only one I saw was POTS. But I’m not even sure that’s what I have (my heart rate isn’t always 30bpm faster standing than seating). I’m just nervous it could be something way worse.

And thank you for the suggestions @Pistol and @KiminOrlando. I’ve been to a few neurologists already and so far, none have been of much help getting to the bottom of whatever this is. But I’m going to keep doctor hopping til I get some answers. 

Do any of you ever feel a pressure type feeling in your brain? Specifically, around the base of your head/right above your neck?  I have so many bizarre symptoms that are so hard to explain that don’t seem to fit neatly in the POTS box. 

Thanks all,

[StayAtHomeMom]

POTS has an underlying cause. That cause could be your symptoms that don't fit. 

During my journey of finding out what is wrong with me I have had to do a lot of searching myself. I had a poor man's tilt table done in the doctor's office a few times (they weren't doing it correctly). And as I was searching I came across POTS and originally dismissed it due to the fact I did not faint. Couple months later I was discussing it with my mom and did a poor man's myself and was shocked by what my heart rate did. It explains some of my symptoms not all. Still have a breathing issue 24/7 going on over 3 years straight that no doctor can figure out. I ended up doing a poor man's every day for a month prior to my second opinion cardiologist and I noticed my heart rate was not always 30 bpm difference. Sometimes it was 20 sometimes 50. Either way it was not a normal response. Put me on an actual tilt table and it turns out I do have POTS.

My point of this very long post (sorry for the length) is POTS and other dysautonomias are individual. I have a relatively mild/moderate case and there are days were I can't do much. Others where I feel almost normal. Symptoms cycle and it makes it very difficult to diagnosis and deal with. 

Regarding the pressure in your head I do get that. Had it happen a couple hours ago. It starts at the base up my skull and goes up to my ears. Kind of feels like a pressure change but not quite. Usually happens when I do something over my head for about 2 minutes or so. Effects me for about 30 minutes, if I rest afterwards then it goes away. 

Also the 30 bpm difference for the POTS criteria is from laying to standing. I have noticed that a lot of doctors make you sit in between for a few minutes and ease up. If it is safe just stand up. It gives a more accurate reading. Watched a pediatric cardiologist test my son (incorrectly) and I just shook my head at her. He goes at the end of October to rule out POTS from my specialist. My specialist I trust to rule it out since he actually seems to know what he is doing. 

Good luck. Hope you find out what is going on with you. 

[Pistol]

I too get the feeling of pressure in the back of my neck with mild pain going up across the top of my head. I belive it must have to do with circulation changes to the head because I also feel fatigued when that happens. ---- @StayAtHomeMom - about constantly getting a poor mans Tilt dome wrong by docs ( happens to me all the time as well ): the dysautonomia project website has a video and instructions on how to do orthostatics proprerly. I have printed it out and take it along for appointments or ER visits to show them. Mostly they do not wait the full 5 minutes after stanfing, they just do the one minute after, or don't even wait that long. 

[Guest KiminOrlando]

Did the neuro do a standing MRI with flex to check that area of your neck / brain stem? I would still try a Rheumatologist for the joint issues. 

Don't give up.

[StayAtHomeMom]

2 hours ago, Pistol said:

I too get the feeling of pressure in the back of my neck with mild pain going up across the top of my head. I belive it must have to do with circulation changes to the head because I also feel fatigued when that happens. ---- @StayAtHomeMom - about constantly getting a poor mans Tilt dome wrong by docs ( happens to me all the time as well 😞 the dysautonomia project website has a video and instructions on how to do orthostatics proprerly. I have printed it out and take it along for appointments or ER visits to show them. Mostly they do not wait the full 5 minutes after stanfing, they just do the one minute after, or don't even wait that long. 

For my son they had him lay for 20 minutes. Sit for 5. And took it immediately upon standing. Same doctor who said the diagnosis didn't matter, he needed to drink 6-8 bottles of water a day, and ignored the 2 weeks of poor man's data i did at home. Only pediatric cardiologist in my area. He is 15 now so my specialist 3 hours away agreed to test him since POTS can be hereditary. 

[Heidi123]

Are you hypermobile by any chance? This can be an underlying condition that suddenly flares during pregnancy. I am hypermobile and last year took a course of antibiotics which had a toxic effect on my body and I had all the symptoms you are saying. The shaking and the rickety loose joints etc. I'ts been a long road but I've now been diagnosed with small fibre neuropathy off a neurologist. Also hypermobility off a physio.I think if I'd seen a rheumatologist I would have got a fibromyalgia diagnosis. I am now starting with the POTS type symptoms and I will be looking for a diagnosis for that which I know will be a long road. I always diagnose myself and just ask for referrals as my doctor quite happy to give me more meds which cause me more issues.

[Penelopesmom7]

@Heidi123 i am very double jointed in all fingers, but not my elbows, knees or any other part of my body. Would that still be considered hypermobile? 

@Pistol I think it must have to do with circulation. Sometimes, I’d feel my brain shake/crazy pressure. I hope it’s just circulation related vs brain swelling or atrophy. 

@StayAtHomeMom thank you, I know everyone’s case of dysautonomia is very inidividual and unique. I just wish I knew for certain what specific type of dysautonomia (or whatever else) is causing this already. The not knowing is the worst. I definitely intend to keep looking for answers. 

@KiminOrlando I tried asking a neurologist to do that, but he dismissed me and said that that was unnecessary. I’m gonna ask the next one I go to do that. 

Thanks everyone for all the input and support

[StayAtHomeMom]

Doctors are human and can make mistakes. They are also taught most things that are wrong are the simple things. Dysautonomia is not one of those simple things and appears to be uncommon (if not rare). If your doctor seems to dismiss you, find another. If they don't seem to be able to adequately explain symptoms or issues, find another. Most of us have had to go to a lot of doctors to find good ones that take care of us. Don't give up and remember they are only human. 

[Heidi123]

23 hours ago, Penelopesmom7 said:

@Heidi123 i am very double jointed in all fingers, but not my elbows, knees or any other part of my body. Would that still be considered hypermobile? 

 

Yes this would be classed as hypermobile/connective tissue disorder. I  was never really bendy as a child but can pull my thumb to my wrist and just the fingers going back as you say is a score on the beighton scale, mine do this too. I never noticed my elbows and still don't see it but the physio says my elbows do. i know my knees do.. If you took any meds before this occured ie antibiotics, statins or certain pain meds they  can have an adverse reaction and cause issues. I have neck problems which cause a lot of my head issues I only started having these issues a year ago.I'm 47 it started after a course of antibiotics, my neck probs manifested 8 years ago.