Increasing symptom intensity

Symptom improvement at the start of the year has been reversed for my daughter. ( age 17)

The brief hydrocortisone experience appeared to be the turning point ( backwards). However this may be coincidence.

Within the past month the following have ramped up in intensity

1. Jaw and neck neck pain - which knocks onto headaches and shoulder pain ( attachment points for muscles being big issues - shoulder/ neck/ head).
2. New pain at neck/ head junction and increasing pain around temples
3. Joint pain - feels like " termites" between joints : joints feel weak and muscles adjacent feel tight. I don't know if this is general or is typically a winter thing?
4. Note - where there has previously been a broken bone it does not feel like termites, it feels like dry ice between joints
5. Muscles - generally tight - feeling like just before onset of cramp, some very "knotted" intermittently
6. Knees in particular feel as though they have been " overextended"
7. Hips sore
8. Lymph glands constantly swollen
9. Breathing issues ( can't get all the way down) more constant - feels " inflamed"
10. Sleep disrupted ( can't get comfy)

Reactions to drugs have put her off taking meds other than paracetamol and ibuprofen. These generally don't cut it (we have amitryptyline in cupboard that took ages to source a non yellow pill ( E104 reactions)).


I can't seem to access any gene testing for drug processing ( myDNA do this in Australia), as it would seem that it's likely that particular processes are affected

I'm posting this to try and determine if there are treatable aspects to any of the above - we have a GP appointment and GP can be empathetic and proactive ( we do have to tread a fine line though)

Are there any suggestions of potential routes for further enquiry? We had a rheumatology appointment which suggested fibro, not EDS

Any words of wisdom appreciated

 

"Muscles - generally tight - feeling like just before onset of cramp, some very "knotted" intermittently"

sounds particularly like possible lack of sodium?

 

Thanks for replies. I think electrolytic balance is definitely affected. ( probably blood volume effects too)

We have just sent off a hair test (did one at the beginning of the year and results were not good for electrolytes) to see what movement there has been.
Magnesium seems to be an issue - we use epsom salt baths and supplements, but noticeable if miss a day or two on supplements. We do try and keep salt up too.

The supplements that had most effect for my son during PVF was Blackmore's PPMP ( potassium phosphate, magnesium phosphate), however these are not generally available.

We don't get to GP often, so I want to make the most of the appointment, as she has played ball re referrals and blood tests. If I can suggest some avenues, she may try and push for them.
I have a feeling that pain management clinic will be suggested, however we would not be able to do the journey involved for this together with appointment. From another child's experience it was basically mindfullness/ CBT ( in persisting she got a TENS machine for scoliosis)

 

Did you go to a specialist EDS clinic? From what I understand there has been a lot of development in this area in last couple of years, and not everyone is up to date.
Apologies if this is an inappropriate suggestion.
The EDS fb sites contain info about the well respected diagnosticians. Also a lot of discussion about pain.

ETA: Eds added to last but one line.

 

Please excuse if this is completely irrelevant and you may have answered the issue elsewhere @Amw66 - in which case just ignore.

The first thought that springs to my mind is what dose if hydrocortisone was she in and for how long. How long had she been off it and was she tapered off it correctly.

As I'm sure you're aware one had to be very careful coming off steroid treatments and some people find it much more difficult to adjust than others.

 

General rheumatologist, who took a thorough history, asked questions re sjorgen' s, pain and did exam.

My daughter is not super flexible , however chiropractor had picked up hip issues, jaw/ shoulder, and joints being "hypermobile" - very easily adjustable and would provide copy notes . Chiro does give intermittent relief.

I don' t know how up on the various types of EDS she was. Consultation seemed to be looking for " super bendiness" . She did have a physio in attendance who had had cfs, keen to support exercise paradigm s. ( Sigh)

Thanks for the facebook info, i will check this out.

 

Is it ok to PM on this one ? I would like to attach a couple of photos that have been agreed to share privately?

 

Of course. You can PM me anytime. I don't claim any expertise or knowledge though.

 

Thanks. Sometimes good just to bounce stuff off someone!

Sadly professionalism lacking from endo and head gp in practice had huge lack of knowledge.

 

Have you tried iHerb? I believe they have it, might have dreamt it. Regarding electrolytes in general, I find I need both magnesium malate and magnesium glycinate every single day, or I will cramp up (or more accurately, go painfully stiff in most muscles). I also need potassium and salt (10g) every day to not end up with low values and worse blood volume issues than I have to. This as well makes a huge difference in how well and functioning my body feels.

I am nearly hypermobile in my hips and between my shoulder blades. This is largely because my muscles/tendons in these areas are so stiffened and immobile that they effectively take over all the support that should have been around the joint, making the muscles that should do the work lax and weak. This strain of course makes them more stiff, weakening the others even more, etc. In other words, no EDS but approaching hypermobility from a different angle.