Feels like I have come home at last…people who understand…
Thank you both. I will fill in the Symptom checklist when next on the PC (ipad won’t open it to edit), it’s an interesting list that includes many things I have trouble with but hadn’t necessarily linked. Very interested to see what my symptoms point to.
Headaches: Looking down makes it worse but I have periods where it is just a nagging constant thing and periods where it is awful. These awful times are normally brought on by an unexpected bump, stepped off a curb I didn’t see or a bump in the car. They are at the back of my head but hit me behind the eyes. I have seen a physio after neck MRI (2 or 3 prolapsed disks) and she eventually helped by moving my head on my neck for me , she thought to get it tracking properly. Generally it is at the nagging constant low level – compared to when it is horrid rather than compared to no headache – state until I do bump it and then it gets horrid for a few weeks. It’s generally worse at night (hence sitting here typing at 5.30 am) It has become one of things I put up with it and I have given up mentioning it to doctors.
Have wanted a neck brace to try for years but have never convinced anyone to let me have one. I use bandages a lot for pain relief elswhere (Profore #4 cohesive is amazingly useful for ankles, fingers etc) but necks are not something you can bandage…
Dizziness: vertigo. dizziness on head movement, especially in bed when turning over but feel slightly dizzy all the time just moving my head. Had all the normal physio stuff for inner ear problems and it hasn’t touched it so given up trying to fix it. Procloperazone helps with the constant nausea.
MRI: I had a head MRI about 10 years ago to rule out MS, no idea what it showed except neurologist said I didn’t have MS. How do I convince my Rheumotologist to refer me for a head MRI and to see to a neuro again? how do I get a copy of the pictures and raw data? What is a ciny MRI?
I saw Prof Grahame in London once last year after 12 years of battling locally but have no follow ups as my Reumo used to work with him. Unfortunately the only thing she ever does is check my Beighton score, it’s the only thing she has. I did convince her to refer me to the local autonomic “expert” but he was completely uninterested just as he was with my daughter.
I have got to the point where I have given up on the head symptoms. My life has fallen apart mostly because of them, my plans to make a go of my own business after being made redundant have floundered as how can you be creative and run your own shop with constant jont pain, headaches and tiredness? I am one of the many who are too ill to make a real go of things but not ill in the right way to get help. The UK NHS is geared up for obvious things that need operations to fix not middle aged men with invisble problems that take time and thought. I have managed to be referred for some of the joint problems, (had a bone taken out of my thumb to help with the arthritis and seeing Ortho about impinged hips ) and I have at last found a GP who is keen on finding out more about EDS, she has been great with the urinary problems and with getting my daughter seen in London. She is trying to get us both compression tights and she has also referred me to Prof Mathias (UK PoTS expert) but the waiting list is huge.
My 16 year old daughter has at last been to see Prof Mathias in London about her autonomic problems and been diagnosed with EDS too. Hopefully she will get some help now.
Sorry had enough typing…sorry it’s a bit all over the place…like me really….will fill in the symptom sheet. Attached another pic or two.