Teenage dd pains … what are they

[gratefulheart]

My daughter has been struggling for some time with aching and painful hands and feet. No swelling and no rheumatoid factors on blood tests. Her hands and feet feel crunchy, lumpy and bumpy and are tight and sore, like I sometimes get in my neck and shoulders when I’m stressed. She’s in a lot of pain and discomfort. Doctors not doing anything and I’m not sure how to help her apart from daily hand and feet massages but that’s not addressing the underlying problem. Any wise ideas?!

Any other CREST signs? Highly unlikely but could be scleroderma

Has she also had a full blood panel done to look for any low results like iron?

Low vitamin d can cause bad muscle pain.

she might be hypermobile? It’s not always obvious.

if she was my dd id take her to see a podiatrist and also an osteopath.

Yes all her bloods came back borderline low for iron, folate, vitamin d, b12. Advised over the counter vitamins

she also has some skin issues, not thickening ( just looked up scleradoma) but purple patches when cold, easily reacts to touch with raised marks and sensitive to lots… creams makeup etc, doesn’t wear any of them. She also has achy joints knees and hips and gets very tired, but doesn’t sleep well. She’s autistic and finds settling to sleep hard.

im trying to get her to agree to see an osteopath but she is very mistrusting of what she sees as alternative medicine,

Thyroid?

Thyroid checked all fine apparently

can I request she sees a rheumatologist? Would that be right avenue? Or is she too young, they’ve referred her to immunology exploring possible mast cell activation

and also gets very dizzy and lightheaded at times, possibly pots?

she just feels so terrible all the time

Ehlers Danlos Syndrome is often present in people with autism and adhd. Maybe have a read into that…mine causes thin sensitive skin, aching joints (because they aren’t being supported properly by connective tissue), mild hypermobility, cold hands and feet. Symptoms vary massively though depending on type

We had similar with stiff hands rather than crunchy, rashes on joints that were little itchy bumps and a friend said to talk to GP about Mast Cell Activation. Weirdly it cleared up that summer but you might want to look into that. DD also get's faint standing too long, similar to the POTs.

I have MCAS, POTS and EDS. They are commonly seen together and there does seem to be some sort of link to autism. If she has possible POTS and MCAS then EDS is very possible too. I also have dermatographia and I know others with EDS with it to some degree.

GPs are meant to diagnose EDS now and have a toolkit to help them but seem reluctant. I was referred to rheumatology where I was diagnosed but people in some areas now battle for a referral as rheumatology don’t want to see them.

Thanks for replies!

the gp referred her to paediatrician who has referred her to immunology…. She’s not fussed about the skin reactions and other symptoms, telling me she has lived with them long enough it’s fine. What she can’t manage is the pain in her hands and feet… is she too young to be seen by rheumatology? What can be done if it is Eds? There seems to be no next steps for her pots symptoms either, just to drink lots of water and eat a packet of crisps a day for salt

I don’t see why she’d be too young for rheumatology? I’m not sure though. Dd was 18yo when she was diagnosed with EDS. So not gone through it with a minor.

yeah sadly there is nothing really on the nhs to be done for either POTS or EDS. Seems to be a case of “here’s a leaflet now go away”. And obviously any issue for the rest of your life will be attributed to EDS. For me having the diagnosis has led me to realising what I need to do (or at least try) to improve my quality of life as much as possible. So keeping active, going to the gym , doing lots of mobility type videos and doing this even on days I don’t feel like it.

And realising that sometimes something can’t be fixed. For instance for years prior to my EDS diagnosis I’d had a really bad problem with my ankle and was struggling to walk. I had a torn tendon repaired, it made no difference and then tore again. I was back and forth with a really well known ankle consultant who was stumped. He offered more surgery but I was reluctant as he didn’t know what the issue was. Then after my diagnosis I realised actually I needed to really ramp up the ankle strength and mobility work as it was EDS causing the problem. Sometimes knowledge is power. Reading that flat feet are common for people with EDS and realising that was contributing to my ankle problems and getting orthotics.

And she can take sodium tablets rather than eat crisps if she’d prefer.

I would definitely request a rheumatology referral. I and my DC all have psoriasis (mainly skin for me) and one of the DC has had joint pain in their fingers since teenage years, diagnosed early 20s after referral as psoriatic arthritis. Well controlled with good pain relief ( and has improved with age too tbh).

I'm not saying that it is rheumatoid but approximately 25% of people with rheumatoid have no markers in their blood results. Id definitely see if you can get a referral to rheumatology - there's over 100 types of arthritis. She shouldn't be suffering like that

Do her fingers go blue purple?
could it be reynauds. (Apologies for the spelling)

I was also going to say MCAS.

I think I have it. I am also autistic and have ADHD.

My ADHD psychiatrist told me to take fenofexadine 120mg at breakfast. Tbat helped but not completely so she told me to take another one at liuncb and continute with that unless I got side effects.

For the POTS, try electrolyte drinks (eg Nuun) and generally drink more water. Also take a low dose zinc supplement.

For insomnia - magnesium supplement witb dinner.

All tbe above is advice from my psychiatrist.

Can the mcas cause the joint and muscle crunchiness and pain?

Thank you so much for posting and adding the electrolytes - I wanted to find some that don't have sweeteners in ages ago but didn't want to start a whole thread! We didn't investigate further with MCAS but if it seems to be returning we will.

Yes.

i meant to also say that as a PP has suggested EDS could also be in the mix. Also ADHD.

Autism, ADHD, EDS, POTS and MCAS go together. ME/CFS also seems to be linked to all this. I have ME/CFS but not EDS.

Low folate will make you feel horrific.

I'd be looking at nutrition as alongside everything else - is she getting all her requirements.

There's good books that explain what foods contain what nutrients and why the body needs them. I bought one in my early 20s and helped me sort my diet out. Have adhd and possible asd.