Hi I am one of the patients who nobody wants to help, I'm in between departments all saying its the other person's remit! In fairness to gastroenterology they did colonoscopy 2 years ago & recent endoscopy just reactive gastritis but no IBD. I already had full review from Dpt Tropical Disease & Infection who at the last stretch diagnosed Obstructive Sleep Apnoea (now on treatment Cpap). I was told it was highly unlikely also, so you can understand my distrust of professional opinion of those who don't follow criteria. Luckily this Dr used criteria. The suspicion of cfs/me was dropped.
After 6months gradual improvement went to gradual decline with clear episodes of new inflammatory signs.
Red painful joint swelling, random migratory. Knees knuckles big toe joint. Also hot burning red painful soft tissue swelling around joints. Red sore eyes, dry eyes now gritty, severe dry mouth at times. Episodes of painful but mild irisitis (unconfirmed as eye emergency closes at 4pm) photos of redness and excruciating eye pain on any light. Esr high in connection with joint swellings. Photos of joint swellings also. I've suffered oral ulcers for years but episodes coinsided with joints and eyes and pustule outbreaks. I had adult onset pustules at a time when I suffered from mild fatigue and terrible severe mood swings every 30 to 60min in most afternoons. I also got sores around genitals never looked just felt sore. Back then I never bothered doctors unless really needed to. I never had this type acne as teenager. Neck; chest; back; bum; shoulders & now arms!
My severe fatigue started 9 years ago but took on a new severity after c section 3.5years ago. Pain has become massive issue last 3.5years. Diagnosed prior to OSA treatment as fibromyalgia with polyarthralgia; migraine which is now chronic daily headache. Balance issues brain fog; profuse sweating; chronic low grade fever. Now 14. Episodes of ulcers in 9 months.
Sorry to go on, just trying get you understand. Chronic palpitations; nasal drip; ENT thinks chronic tonsillitis., currently under control mostly. Mri was clear. Get infection after infection became severe lymphopenia 0.3. Iron deficiency despite no periods due to coil. Believe bowel blood loss. Had told it was Ibs. Loss appetite, nausea, binge eating; Bloods since new symptoms indicate possible autoimmune.
Problem is rheumy is Horrid, not interested in getting bottom of anything and just wants close my file. Thinks I'm not ill enough. Tells me I have no severe life threatening illness! Had low levels lupus anticoagulant, slight elevated drvvt after ibuprofen so may have been higher. Strong history on both sides clotting problem with heart attacks & strokes early onset leading death & disability. He wouldn't even diagnose costochondritis my gp had to. When I asked about rib pain he shrugged! When I asked comment he said we'll yeah all muscular rib pain is costochondritis!! Doesn't look at numerous rashes properly on photos Denying they purpura saying they are raised when clearly they not raised!
Sorry point I'm trying to make is he won't apply criteria. In spite of all evidence denies anything rheumatic wrong with me! Even Immunoglobulin a elevated. My gp given his advice won't refer me to specialist as too much money! Even oral specialist who was lovely said not behcets it's rare. Without genital ulcer you don't have it. Cfs/me push me to get diagnosis as my symptoms suggest inflammation.
Im in dire situation no real support. Husband works full time & looks after toddler, struggling. All family at big distance. Not many friends left & often no energy to see the odd ones left. Gp works with me but seems trust rheumy opinion over mine. I can't live in this pain. Rheumy letters are inaccurate and gp refusing my corrections. Rheumy won't make corrections that I require despite evidence that its wrong. He only added the rest of medication and diagnosis he missed. He lies denied ulcers were a problem in his letters! Now says I had one genital sore with out referring to my history of them at all.
To be honest I don't know how much more I can take. I'm never seeing him again. If I confide in husband he gets depressed which then upsets me. I so isolated. Got pip Tribunal coming up & social assessment result is they cant get me help with Joseph either as I don't qualify I have a car. I don't have full access & regardless of car still in significant pain. & often too ill to drive him to nursery.
Im so sorry to have gone on so long. I'm just despairing it sometimes feels be much better if I didn't suffer. A life of pain, burdening my family and all alone with no help just doesn't feel like a life I want. I know we all suffer and I'm not doing anything about how I feel but I just pray the suffering will end. It's constant pain.