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I have not yet been diagnosed, but have been having a wealth of seemingly unrelated issues since childhood. There is a long standing joke within my family that I got into the medical field to diagnose myself. I am a medical assistant.
In my life I have been diagnosed with everything with vitamin deficiency eczema, migraines, anxiety, growing pains, hypochondria and chronic constipation issues (sorry I know that’s TMI)
My question is does it usually seem like there is a culminating trigger that makes everything go down hill? I had surgery on both hips last year for torn/shredded labrums and impingement issues. Since then I have noticed a marked increase in my headaches/neck pain (the pain is the worst where my head meets my neck, and feels like my skull will explode or my brain smoosh from the pressure) I consistently have a nasal drip and incredible nausea when this pain flares the worst, I have issues with trigger points in my neck and shoulders that my massage therapist gets a workout trying to diffuse. I have never fainted or passed out but I do get the black dots that blink across my vision with some light headedness. My BP usually runs 90s/60s and my pulse is almost always over 100bpm. I have like 6 out of 9 on the hypermobility scale and I can do the reverse prayer sign. When I developed a snapping hip since my 2nd hip surgery my surgeon said it was like a light bulb turned on and my whole case made sense. EDS fits, and fits well, and set me up with a geneticist within the month. I see him on 1/13. I guess I would just like to know if there is anything I can try preemptively to relieve any of the pain I am in. Tramadol can only get me so far.
THANK YOU!
Hi Katiebeth,
I’m sure you’ll find this a very friendy, supporting and informative website, we all have useful info to share and problems to seek answers to. Some of what you need to know may have been discussed before (often several times, in different ways) so the ‘search’ feature above is a good place to start, for those types of info.Many have been triggered by a virus or a trauma of some sort and also many have struggled for years to get a comprehensive diagnosis, you’re among friends here. When you get time maybe you might want to check-out Dr Diana’s symptoms videos, I think you’ll find some ‘aha’ moments.
http://prettyill.com/videos/watch/DrDiana_and_her_symptoms_Ehlers-Danlos_POTS_dysautonomia_hydrocephalus
and
http://prettyill.com/videos/watch/my_symptoms_part_2
Happy viewing,
Barbara
(UK)You are not the only one who has been diagnosed with so many health issues. So cheer up .
Genetic problems can trigger different diseases along a person life and this is not really rare.
You are not the only one who has been diagnosed with so many health issues. So cheer up .
Genetic problems can trigger different diseases along a person life and this is not really rare.
Well, I am by no means throwing a pity party just trying to get some feed back. But, you “Texan” were kind of rude. Don’t discount my diagnoses, as you do not know the impact these diagnoses have on my family and myself. Negativity is not appreciated, nor needed.
Hi Katiebeth, I too have trigger points that are so bad due to my EDS. I see a myofascial trigger point therapist twice a week for starters. I have pain in the same areas plus! I do have to do a lot of the exercices at home along with a trigger point cane I use and it has been so helpful thus far. The problem is finding a therapist who is truly trained in this type of therapy. Do your homework! Good luck, Kathy
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