Not Being Able To Progress With Weightlifting? Dysautonomia Progressing

[trappedat20]

I actually have two questions but they are slightly related so I'll post them first here.

First off, a few months ago we were debating the possibility of Myotonic Muscular Dystrophy which had me very upset. I never got tested for it so I don't know. I didn't mention it on here because not even a week later I went to the chiropractor and found my supposed cause. Which as we all know now was bs and I still don't know my primary cause. I saw a blog post from a popular dysautonomia blog that sounded similar to me. I looked it up and it sounded even more similar to me so I brought it up to my doctor. He did a finger test for myotonia and than told me it was a good possibility. At the same doctors appointment I asked for a handicapped parking permit (which being the idiot that I am never turned it in because I feel like it will make being sick official or something) and he wrote down the Myotonic Muscular Dystrophy thing because he said they won't ask questions. That was a few months ago and on my primary cause search I next jumped to the chiropractor (because that was good news), to chiari malformation (but than my catscan showed up fine), to idk.

Back in November when I started going to the Gym I was making a little bit of progress every week. Than it got to the point that I wasn't making progress, and now I'm going down on lifts. The problem with that is I do everything perfectly. I have a husband who is majorly into body building who can vouge for that. He says there is not anything he can tell me to tweak because I'm doing everything perfectly, and he thinks there is def something wrong. I'm eating in a surplus, getting proper rest, going to the gym like I'm supposed to, eating enough protein, everything. It's like I'm doing everything perfectly and getting weaker and weaker. My question is if this is part of the dysautonomia or my mystery primary condition? Any other weightlifters on this board who do everything perfect and get weaker and weaker. The problem is that I was progressing, and than I stopped, and now I'm getting weaker and weaker (at the same time I'm getting really sick.) I'm getting weaker outside of the gym too though. I am having trouble taking my sports bra off after I'm done and this has nothing to do with working my arms and having them be tired because this happens after legs days too. My husband has to take my sports bras off because I'm too weak to. I have to tell you a secret in hopes you won't judge me too. A little while back I was taking a steroid to help combat this problem and I still kept going down on my lifts. This was a steroid that is female friendly and was originally made for muscular dystrophy so it wasn't really dangerous or anything. I stopped taking it because I kept going down even with it. It's something that people said made them be able to lift like crazy too. I'm not sure if this is because of the dysautonomia or if there really is some kind of muscular dystrophy type thing going on.

The second question is slightly related. Can dysautonomia progress? I feel like I'm progressively getting sicker. I'm not even talking about good days/bad days stuff. I'm actually getting sicker. There is less and less stuff I am able to do and new symptoms popping up (like the seizures.) Is the fact my dysautonomia is progressing give me any hint about the primary condition or rule certain things out? In what cases does dysautonomia progress? I got full blown sick a year ago and lately (the past month) I'm progressively getting worse and worse with no good days and no symptoms appearing.

[gertie]

Have you had your adrenals checked? When I was younger I was into weight lifting but as this illness progressed I had to stop. The more I tried to exercise the weaker I got. I also found out I had adrenal failure.

[Katybug]

I was not a weight lifter but I rode horses as a second profession. I worked around the farm moving 50-75 lb hay bales, 50 lb sacks of grain, 5-7 gallon water buckets with no problem at 125 lbs myself. I progressively became weaker and weaker even though i wasn't doing less....somehow i was deconditioning on the same amount of activity. For me I think there are two issues that cause it. First, I have read some info on this forum that people with pots often experience post-exertional malaise where our muscles don't recover near as quickly as healthy individuals. I know one of these papers also talked about us having lactic acid build up much faster during the workout as well. My second issue is my cervical spine instability which I know was there since before I was symptomatic and has progressively gotten worse with each annual diagnostic imaging. It has now gotten to the point that the docs can consistently see me reflexes in my arms are affected. I've been telling them for years that my strength has been affected but they only have a clinical test to see if you qualify as weak that day with the whole "squeeze my fingers", "don't let me push your arms down" routines. This tests don't account for how strong you were compared to youself a month or a year ago. My arms and hands were strong for my size because I was fit and the type of work I did, so it took a while for them to see clinical signs of what I was saying. I can't really answer what is wrong with you but it is definitely something to research and address with your docs. There is a group of diseases called myositis that you may want to research and rule out as they cause muscle weakness and are a differential diagnosis for pots. I agree that you may want to have your adrenals checked. Truly there is no judgement here but if you recently stopped the steroids and the significant worsening in this symptom coincided with this, it may have caused a problem with your adrenal hormones especially if they were in any way struggling with function.

[trappedat20]

@alicia I haven't but I've been meaning to. I didn't know that could cause muscle weakness like that. I will def. look into that though. Thankyou

@katybug no the steroids didn't really do anything at all. I was still going down on my lifts while I was taking it and when I stopped I was still just as weak. They didn't do anything for me which my husband said is really strange because they make everyone's strength go up. I was progressively getting worse while I was taking them, and still getting worse at the same pace when I stopped. It's like I never took them to begin with. They just didn't do anything. Honestly I don't know why I haven't gotten my adrenals checked by now. I keep meaning too for multiple reasons but haven't done it yet. That's interesting about the lactic acid buildup and taking longer to recover what could I do about something like the lactic acid buildup? What's this cervical spine instability thing that you're talking about? Oh they had me do that stuff soooooo many times in the hospital. You'd have to already be really weak at that point for it to show, but it doesn't show where you were before than. I looked up the myositis thing and it's def. going to be on my list of possibilities. Honestly when you have dysautonomia you have such a laundry list of symptoms that it's so hard to figure out what else is going on with your body because you can have the symptoms of many things. Thank you though I'll keep that in mind for my doctor.

[IceLizard]

My mother experienced the same thing. She called it "muscle wasting." She used to be so strong and fit, but she got progressively weaker and her muscles lost their tone. I think it may have to do with the Ehlers Danlos syndrome, but I don't know for sure. I haven't gotten to that stage yet, but if I try to push myself when exercising I always regret it. I am doing very light exercising and try to do nothing that makes me feel ill. I collapse if I try to do a "normal" workout. I am sorry you are having such a rough time and I hope you can find some relief soon.

[trappedat20]

@IceLizard I know what you mean. I really don't do cardio. I try for health reasons, but lately I'm so sick I can't do any kind of cardio at all. Before I was able to only do the bike at the gym, but now I can't do anything. Weightlifting was the one thing that didn't give me any problems but now weightlifting is making me sick too, and I'm getting progressively weaker. It's the catch 22 of dysautonomia. You need to workout to stay conditioned but that's easier said than done. I don't have Ehlers Danlos that I know of (I haven't been tested) because I never broke anything or dislocated anything or been super flexible or anything that would make me suspect it. I collapse too. Everyone at the gym must think I'm a freak by now. They go up to my husband and tell him he looks better everytime, I'm sure if anyone came up to me they'd tell me nobody would judge me if I gave up and went home. I swear people hate when I'm in their establishment because I'm just an accident waiting to happen. Hang around me for a few days and I'll either pass out or have a seizure in front of you. Now that these seizures are becoming a lot more frequent I'm becoming very worried about the gym because I don't want to have one in the gym of all places. It's not like fainting which I can stop from happening when I get the signs. Once I get the signs I'm going to have a seizure it's too late and my best bet is to lay down before I hit the floor.

[Katybug]

http://forums.dinet.org/index.php?/topic/22414-post-exertional-malaise-exercise-ans-dysfunction-and-immune-impact/?hl=%2Bpost+%2Bexertional+%2Bmalaise

Here's one of the threads we had going on post exertional malaise with a study attached. I know there was at least one other. I'll keep looking and pist if I find it.

[Katybug]

Oh...the cervical stuff... all of my cervical discs are herniated to some degree. One is contacting the theca (covering of spinal cord). There is another that is actually impinging on my spinal cord. The vertebrae surrounding that one are not sitting on top of one another correctly. I haven't had any cervical curve for years. I apparently don't have any thoracic curve anymore and have some mild scoliosis. All of this is common in EDS patients. The issues in my c spine have progressed to the point that they are causing neurologic symptoms. I am seeing a neurosurgeon on Monday who is supposed to be the US guru doc for chiari and c spine instability especially in EDS patients. He actually works with my geneticist a lot on mutual patients. He does a lot of c spine stabilization surgery. One question that no one can answer is how much a surgery on my neck would relieve some of my autonomic issues. Some of the spinal nerves in that area are involved in autonomic functions.

I read your other post btw....sorry you had another seizure tonight.

[trappedat20]

I actually think I remember us talking about this on my old thread lol. The "Found My Cause of My Dysautonomia and It's Curable" one. Only it turned out to be total ** that it was going to make me better and everything. My neck is as straight as an arrow and I have a degenerative disc in my c4 and arthritis and I had 2 fractures that healed. They said my spinal cord was pressing on my brainstem but my doctors at the hospital laughed when I said that. I got some relief from chiropractor adjustments but it wasn't making me better like they told me it would. Good luck with that. I wish you the best I don't know who I should see for my neck now. I see that chiropractor adjustments are helpful, but so many chiropractors lie and try to make you think it can cure stuff that it can't and try to screw you out of money. I can't afford it either and insurance doesn't cover it. Do you think physical therapy will work or should I ask my doctor about surgery too? Maybe it would have worked down the line but it had been 3 months and besides the initial relief of neck pain, nerve pain, and the migraines/ and sensitivity to light/sound (which came back towards the end of my adjustments anyways) it really didn't help the dysautonomia. I feel kinda bummed and lied to because they made it out like it was def. the cause and in 3 months I'd see dramatic improvement and at the end of the 9 I would be all better. Hahahahaha nope. Thanks, me too. I guess the seizures are here to stay. Good luck with the neurosurgeon though. I hope everything works out for you.

Edit: I'm trying to read that thread you posted but I'm so stupid for several hours after seizures that I don't even know what I'm reading lol. I'm going to have to try again tomorrow. Thanks for the link

[Katybug]

It's so hard to say what you should do. I went through more than 30 docs before finding the team I have now. I trust their opinions and they really listen to me without passing judgement and I know they all have a good personal check and balance system about the way they practice medicine. So, I'm confident when they say something and both my geneticist and my pots/migraine neuro (who has extremely conservative views about when you should consider neurosurgery) have both said I need this evaluation because the reflexes in both my arms are being significantly affected at this point plus all my other symptoms. I think my best advice is to find docs that you truly trust and not because they're telling you what you want to hear but because they treat you with respect and can back up what they are saying with information that makes you feel comfortable. It might take going through a LOT of docs to find the 2 or 3 that really help you. It will be frustrating but you will have to decide you are worth the effort. Once you decide that it will get a little easier.

[trappedat20]

Thankyou I honestly have no idea what kind of specialists to see at this point. I'm suppose to see a neurologist because the doctor at the hospital wanted me to follow up and my GP's been wanting me to see one for forever, I don't know what kind of doctor I should see about my neck though

[Katybug]

It's probably a safe bet to start with a neurologist and a neurosurgeon to see what they have to say as far as your neck is concerned.

[trappedat20]

Is a neurosurgeon found at a neurologists office or do you have to look somewhere special for them?

[Katybug]

It depends. My neuro practices alone and the neurosurgeon I'm seeing tomorrow has a practice with other neurosurgeons. When you look up the doctor, it will clearly differentiate between whether they are a neurologist or a neurosurgeon. It's definitely two different specialities. If you have a primary or a family doc, you might ask them who they would see if they had to see one or the other.

[BSmith85]

Just took up crossfit a couple of months ago & thus far everything is going as well as could be expected. I am pretty certain that I feel much worse post workout than everyone else in the gym but I think I am gaining some overall wellness from the activity. My biggest concern is there is no telling just how high my BP climbs during workouts since I have orthostatic hypertension instead of the hypo most experience.

[Susan3]

Have you had your testosterone levels tested? If they are low, that can affect your ability to build muscle. As for feeling weak and tired, that's par for the course for post exertional malaise and POTS, unfortunately. For me the hard the push the weaker i tend to feel. Perhaps talk to your doctor and a physical therapist to design a program that might help. I finally realized that with exercise i have to take it easy and stop while i'm feeling my best rather than push too hard. Best of luck.

[trappedat20]

@Bsmith85 I'm glad you are getting some progress from it and it's improving your health. Yeah unfortunately feeling a billion times worse than the people around you for the same activity is just part of the dysautonomia.

@Susan3 my testosterone is fine. If anything it's higher than normal. I use to build muscle so easily before the dysautonomia. My husband use to tell me I had awesome genetics. Unfortunately, now I'm not only not making any progress I'm going down on my lifts almost every week. I'm getting weaker outside the gym too. My husband has to take my bras off for me and I have this fear that in a year I won't even be able to dress myself. I'm getting weaker than I use to be though. At first I was still able to make progress in the gym, than I started plateuing, and now I put in the same amount of effort (A LOT) and keep going down on my lifts every week and getting weaker and weaker.

[IceLizard]

That amount of weakness appearing so quickly to me suggests it could be nerve problem. Do you have a GP or main doctor you can ask about this? He may be able to refer you in the right direction. Just explain it to him like you have to us.

[trappedat20]

@IceLizard I just made a neurologist appointment for March 26th earlier today because I had my fourth seizure this week. Hopefully, he can help clear up this weakness thing too.

[Chaos]

Hope you can get some answers from your neuro appt.

When I did cardiac rehab for my POTS they had me doing weights as well. I found that I was able to do fewer reps with less weight at the end of the program than I had been able to do when I started. It made no sense to me from a physiological point of view and none of the trainers in the program could explain it either. Since then I've read some studies that seem to explain some of this phenomena but it sounds like you need a thorough evaluation by a neurologist at this point before you start looking for obscure studies to explain it.

Good luck!