This is the last part I promise!
The problem now:
• I am stuck in bed and have been since oct.
• A few months ago i thought i realised many of my friends who had problems with certain drugs not working and ME had since been diagnosed with EDS. I did some research – and thanks to dr diana’s vids, I told my GP and he has referred me to London to a rheumatologist but the appointment is not for 3 months.
• However, I am worried I will be wasting the drs time because I only score 4-6 on the beighton scale and i don’t dislocate or have that major skin problems. My joints snap crackle and pop and I have problems with my neck and knees that sometimes they feel out of place and i have to wiggle to get them to feel right again. (when they click.) The veins in my wrists and hands are very visible. I think I may have thin skin. I would like to query whether my skin is more stretchy than normal. Although if it is abnormal it will only be mildly. I have a lot of stretch marks but have never been overweight. I do have piezagenic papules on my feet.
• I also have problems with pins and needles (bottom of my left foot has been there for 3 years and lessons when i stretch my foot up. I have intermittent problems in other places though.
• I am getting occipital headaches on and off and i have always thought they were due to dehydration – if i don’t drink enough then i get cystitis symptoms, bladder and kidney pain, dry lips and headaches which improve with water. But sometimes now water doesn’t help.
• My bladder is huge and will hold 2 litres but sometimes i have urgency and incomplete emptying.
*I now have symptoms of Raynaud’s as well as the erythomelagia.
• My sleep keeps going out the window. I have melatonin to remind me when to sleep, but if i do too much physically or mentally then I will not sleep. If I sleep often i wake up several times and cant get back to sleep again – often for up to 8 hours. Also being uncomfortable due to pins and needles or joint pain or period pain has hurt things in the past. However, some nutritional supplements, herbs etc, and putting the head of the bed up has helped with these problems and now although i wake up i do get back to sleep again yaY!
• I am also having problems with getting extremely tired after eating “Too much” which is now just childs portions. When I eat too much I got paralysed with fatigue, nauseas, bloated, sometimes sharp stabbing pains in stomach, cramps, heart rate of 160 on standing 140 on lying down. Mine is usually about 80-120. Despite having a stricture in my terminal ileum, the diet and LDN, and the pills from the doctor seem to keep my Crohn’s in check.
• Currently on round 7 of iron pills.
• The private doctor keeps thinking i have an infection and they have missed it and they keep looking, but all the tests i have both now and 4 years ago have been neg for infection and it is costing me a fortune to keep looking. He agrees I may have eds now but is refusing to see me until he can figure out what to do for me. (this was months ago.)
• Periods are also still bad, but evening primrose oil is helping.
• I have been reading the driscoll theory part 1 and want to read part 2 but i cant find it on amazon.
• I would consider trying zytec again but as my family and i between us have paid literally tens of thousands on tailored personal allergy treatments and i now have a daily immunotherapy which only works if i don’t take antihistamines im reluctant to do anything there.
• Considering asking them about mast cell problems, but im not sure if theyd know anything about them. I also don’t know if i fit the picture of mastocytosis anyway.
• Also when i tried omperazole for GERD, im pretty sure it made me vomit so i stopped it and it went away on its own because i could sit up more. (At one point they thought i had an ulcer.)
• Also I don’t know if i fit the picture of increased csf as my mri was normal, my mum thinks that my childhood head span was normal too.
• So I don’t know what i can do to help myself right now – scared as im 6 weeks behind on my uni course i do from my bed.
• I know the private hospital has fixed some things – hair and nails are better, brain fog improved a lot but has since got worse again and my stamina and strength also improved but went again. My heat tolerance has improved and it doesn’t wake me up as much, but i still cant share a bed with someone. I spent 3 years without a single infection, but after treatment, I started getting colds again which made me worse.
• I have a family history of hernias (hiatal and inguinal), vaginal prolapse, osteoporosis, osteoarthritis, cancer, stroke, ASD, IBD, Atopy, dyspraxia, miscarriage, heart disease, indentations in skull on top of head (I have this), TMJ problems. joint pain due calcification, hypermobile joints.
Yeah so that’s me. Any help would be gratefully received and I will give virtual cookies. Also really willing to help anyone out if I can as I realise I have had more luck than some with getting diagnoses so if anyone wants to ask any questions just ask away.
Laura x