HSD and PoTS question.

[Myflexiblefriend]

My 16 year old daughter has recently been diagnosed with HSD. She also has symptoms of PoTS, mainly dizziness on standing, and has a tilt table test scheduled for diagnosis of that. In exploring this I've learned that "coat hanger" pain (shoulders, neck and headache) can be a part of PoTS. We had assumed it to be part of HSD pain but now I'm wondering if it isn't. The PT says her shoulder pain, which she's had far longer than the knee pain that alerted us to HSD, is muscular rather than in the shoulder joints. She tends to hunch up her shoulders and tighten all related muscles to avoid the pain which causing more pain. While a combination of aqua-based and land-based PT has virtually eliminated her knee pain, there's been no similar improvement for her shoulders and neck. Energy healing has addressed the pain in both locations but much more so in the knees. Does anyone have experience or thoughts on this? Is it possible that it is PoTS related - and does that mean a different approach is necessary?

[sing123sleep]

My 15yr old ME/POTS/EDS son had his head in his hands yesterday as I caught him in the rear view mirror. I thought it was a despondent body language, but no. "His head was too heavy to hold up...."

His shoulders r super bendy.....

Doesn't help you much but let's you know neck, shoulder issues are prevalent.....?

[Myflexiblefriend in reply to sing123sleep]

I don't see my reply to you on here but wanted to be sure you know how much I appreciate your response - it's a huge help to know we're not alone. Also when I shared your story with my daughter she said "Yes! That's exactly how it feels!" and she's taken to asking me to just hold her head for a bit. Laughter helps. Best wishes to you and yours.

[Steenygirl1]

Hi,

Coat hanger pain certainly is a symptom of POTS and is thoroughly miserable. Dehydration causes muscular pain in everyone regardless of having HSD/EDS. physios will usually recommend more water for people with back and muscular pain, for instance. And those of us with POTS need more fluid than your average person, but with that extra salt and electrolytes in order to hang on to the fluids, otherwise it passes straight through. Also helpful for other autonomic symptoms such as digestive and constipation issues. However if she increases the fluid and salts just before her tilt test it will skew the results. So she could do it in the meantime and see if it helps but if you want the diagnosis then stop the extra salt etc for a few days before. Check out potsuk website for helping with symptoms if her test isn't for several weeks/months, it's miserable to live with. Personally I manage on the whole with salt, water and electrolytes regime, although last summer's heatwave was a challenge!! I was offered medication by another specialist before my HEDS with autonomic dysfunction diagnosis at the grand old age of 54 but I haven't pursued the POTS diagnosis because of the driving issue - it's a notifiable condition to DVLA and I have never fainted or rarely felt dizzy. All insurances go up when you have diagnoses especially those that require continued medication. all medication has side effects and usually require increasing doses to be effective so if anything can be treated by conservative methods it's always better as the first port of call.

[Myflexiblefriend in reply to Steenygirl1]

Thank you so much this is very helpful on many levels. We are still waiting for the referral so we will explore the potsuk site and increase salt, hydration and electrolytes today! I had not considered insurance/ licensing ramifications. Obviously we need to carefully consider that aspect. A diagnosis is only helpful if it's helpful! Best regards.

[Myflexiblefriend in reply to Steenygirl1]

Interestingly I find nothing at all on the US Virginia DMV (div. of motor vehicles) site referring to specific health challenges either than epilepsy. Both seizures and blackouts are referenced with 6 months since last occurence being the requirement for driving. So my reading is that my daughter would not be affected by a PoTS diagnosis driving-wise in the US. However this needs further exploration before we make a determination - especially since our driving regulations are determined by each state so it could be different from her if she lives elsewhere in US. I so much appreciate your bringing this to my attention.

[Steenygirl1 in reply to Myflexiblefriend]

Ahh it's a UK requirement!

[Myflexiblefriend in reply to Steenygirl1]

On the other hand my middle son is studying in France this year and his type 1 diabetes expenses are literally a 10th of what we pay here - our irresponsible and unkind American healthcare policy is so stupid! I digress - thanks for listening

[Jay66]

I have permanent tightness and pain in the muscles around the shoulders and neck. I avoid pressing any muscles there as each one is in its own little world of hurt.

The reason joints hurt in hEDS is because of the muscles holding everything in place - bone doesn't hurt, and the wearing away of the bone (early osteo) won't have begun yet in a 16 yr old.

The ligaments in her shoulders and neck should be holding everything stable but they are not. Ligaments attach bones to each other. But because hers are made from defective collagen, instead of being firm, they are stretchy (to simplify it), so the bones move around relative to each other instead of being held firmly.

To counter this, the body has automatic systems.

All the muscles attaching to the bones via tendons tighten up - contract - to hold the bones firmly in place. The muscles are now doing some of the job of the ligaments.

So, her muscles are contracting all the time, whether she is are lying down or standing up, although less so when lying down. Muscles are not designed to do this.

This process fatigues and weakens the muscles because they never get a break - sleep or when muscles are relaxed is when your body normally heals them. This is why older EDSers like me (52) can no longer write a long piece of writing or twist the lid off a bottle of cheap wine. Some would say this is a good thing! But the muscles in my hand are too weak.

Muscles which are overused like this also send pain signals to the brain and stiffen up.

The only ways to release the muscles in shoulders/neck and/or reduce the pain is

1. stop the pain signals either being sent or received i.e. pain killer meds

2. massage - oh god it is glorious for about an hour and then they go back to normal

3. strengthen those muscles through physio (best long term solution)

4. take regular lying down breaks to give the muscles a bit of a rest

5. get a shoulder brace

[Myflexiblefriend]

Thank you so much for a very helpful and clear description of what is going on with her shoulders. We see her PT again this week and hope he will have further insight too. It seems so strange that he has helped her so much with her knees (and hands too) but shoulder relief remains elusive. Meanwhile I'll look into a shoulder brace too - her knee braces were very helpful prior to improvement so why didn't I think of that? Sigh - and best regards to you.

[Jay66 in reply to Myflexiblefriend]

I notice you are in the USA. You have the best physio there for eds - Kevin Muldowney. I don't know if you can get to see him or if he is too far away but lots of people highly recommend the visit. muldowneypt.com/ehlers-danl...

[Myflexiblefriend in reply to Jay66]

Yes! We're going to the US EDS/HSD convention in Nashville in July and I noticed his name on the list of presenters. We will definitely go to that session. He's a good distance from us otherwise so I'm so grateful

to have this opportunity. Thank you very much for recommending him. You've been a great help to us.

[Myflexiblefriend in reply to Jay66]

It turns out Kevin Muldowney offers a full four hour evaluation at his office in Rhode Island. He will send us home with full instructions for his protocol tailored to my daughter's specific needs to give to our PT here in Virginia! Our PT is eager to try so we have an appointment in July. It's a 9 hour drive so we're surprised and delighted to be able to take advantage of Kevin M's expertise. Many thanks again for your recommendation!