Pots And Hypermobility

[Connie]

My son is 14 and was diagnosed with POTS and hypermobility. He also has horrible memory issues and severe fatigue. For the last three days, he is complaining of severe pain in all joints and trouble walking. He says he feels like all the bones in his body are hurting not just the joints. It is even uncomfortable to sit.

Does anyone have an insight to what may be happening?

I thought maybe he was dehydrated. I had him drink more Gatorade and cooled his room down more but have not made any difference. Any insight would be appreciated. Tylenol does not help.

Hope

[sandymbme]

Unfortunately, I relate to a great degree! I have widespread pain, just about exactly as your son described. It is part and parcel of my POTS. When I am having a bad flare of symptoms, my pain level usually skyrockets as well. And I haven't found a whole lot of success dealing with it. I experienced some improvement after physical therapy, and sometimes get a measure of relief from narcotic painkillers. Over the counter stuff like tylenol and advil don't ever put a dent in the pain. The fluid loading (gatorade) can help, and i sometimes find a soak in a really warm bath soothing. I would contact his doc come monday if he hasn't improved. And hang in there!

Sandy

[delphicdragon]

Try vitamin D. I have POTS and hypermobility (Ehlers-Danlos syndrome) and was having severe joint and bone pain for a while. After starting on Vitamin D I've found that the bone pain is gone. My vitamin D levels were REALLY low and mega supplementation helped (5000IU/ day). I'd check with his doctor first to determine if he should be supplemented, but that's what helped me. It does take a while to work though.

Sara

[Connie]

Sandy,

Thank you for your reply. I left a message for his doctor on Friday.

How long have you suffered from POTS? I am trying to figure out if his will get better or if it is something he will always have.

Unfortunately his memory problems are so severe he is not able to complete school work this year. The best he can do is read.

Hopefully the future will be brighter.

Hope for All

[Sarah4444]

Hope-

I am sorry that your son and you are going through this. I also have lots of pain as part of my medical situation, and started having difficulty in my teens. However, I did go through a kind of partial remission period in my mid 20s-mid 30s. It is hard to predict what is going to happen, but I have hope that now that doctors are beginning to label and study these disorders, children your son's age should have a bright future. It seems that mast cell activation plays a significant role in this for me (if it isn't the root cause) and wondered if your son had any symptoms of it? Treating it with medications has helped reduce my suffering, and avoiding gluten seems to help my with my cognitive difficulties. I really hope things get better soon.

[Connie]

Sara,

We have increased his vitamin D. We did the mega vitamin D and he is now on the maintenance dosage each day. He will have blood levels checked again in next month or two.

Sarah4,

Cell activation? Like mast cell disorder? We have an appointment in June to check on a possible mast cell problem. He may be in another growth spurt because his appetite has picked up dramatically in the last two days. Did allergy testing point to a problem with gluten or just experimenting with and without gluten let you know that was a contributing factor to some of your problems?

Again I really appreciate everyone's help and support. I do not know what I would do without all the support. It makes a world of difference to have someone who truly understands your problems.

Hope for All

[sandymbme]

Hope,

As far as long-term prognosis goes, the short answer is: nobody knows! The longer answer is, it really depends on each patient. There are some people who are afflicted with POTS in their teens, who recover in their late teens/early twenties, and never have a problem again. There are a lot of people like myself, who had problems in their teens, were healthy through their twenties, only to have a "relapse" in their thirties, that in many cases is far more debilitating than when they were younger. At this point, the research just isn't there to be able even guess at why that happens for some and not others. The good new for your son is that they are researching pots a lot more thoroughly now, and hopefully will benefit from that research. While I remember always being kind of prone to dizzy spells, I only had a few syncope episodes in my teens, and really didn't have a ton of difficulty with some of the other problems that can pop up. When I hit round two with POTS, starting on my 32nd birthday (talk about a lousy gift!), things were much more serious, affected many more areas of my life.

So keep in mind when you read this forum, you invariably only hear from the folks who are sick, it can give you the impression that there are no success stories. But in fact there are plenty of healthy folks with POTS, they are just too busy having a life to post very often! And FYI, you should ALWAYS discuss any diet or med changes with your son's doctors first. Probably an unnecessary caution, but it is vitally important to managing your son's condition that his medical team know everything that's going in to him, from diet to supplements to meds. Good luck! And this forum is a godsend for all of us. Sorry for the events in your son's health that led you to us, but so very glad to help in any way possible!

Sandy