OK so here goes so far my illnesses/diagnosis's
Fibromyalgia
Joint hypermobility syndrome
Degenerative Spinal wear & tear / Prolapsed Disk
Colitis & 2 places on colon oozing blood (yet then My GP told me biopsy's were clear even though they seen it during colonoscopy)
Idiopathic Intracranial Hypertension (& Swollen Optic Nerves)(Causes Pressure Headaches)
Antiphospholipid Syndrome (Hughes Syndrome) (Told me this was cause of my recurrent miscarriages which I've had 4, 1 of them at 14 1/2 weeks and 1 at 16 weeks)(However blood tests now show as negative)
Migraines
Recurrent Miscarriages
Abnormal Liver Function
Psoriasis
Positive ANA blood Test (which has since been negative)
Depression
Anxiety
Tiny cyst on one ovary
Hiatus Hernia
IBS
Other symptoms also include
Hair falling out and what looks like bald patches
Strange rashes and new allergies eg playdough, baby wipes, medical tape...
All over muscle/joint/bone pain
Random Swelling
Unexplained bruising
Excessive Sweating
Constant Temperature Fluctuations
Extreme Fatigue
Constant Gagging
Nausea
Blood in my vomit
Severe daily diarrhoea
Throat seizing up
Difficulty swallowing Medication
Severe stabbing stomach and bowel pain
Symphysis Pubis Dysfunction when I was pregnant with daughter
Chronic hip pain
Electrical pulse pains up my spine
Sciatica
Regular Thrush Infections
Severe Pain during sex
Chest pains
Pseudo-Dementia Fibro Fog could explain this)
Yellowing skin on eyelids
Constant redness across my cheeks looks bit like rosacea
Weight Loss
Abdominal Swelling
Fast Pulse
Stabbing pain in eyeballs
Itchy eyes
Generally feeling unwell and run down
Also when I am pregnant and my waters break I go into full blown constant labour (when this happened with my daughter I was in constant labour but wouldn't dilate past 3 Cm's, when I had miscarriage at 16 weeks I gave birth about 30 Min's after waters breaking maybe not even that)
When Pregnant with my daughter also had dilated Kidney
This is all I can think of at the moment there is probably more.
To me I think they may be missing something, surely there is something that covers everything because a lot of these thing only became problematic after the trigger point which was in June 2010 when I had miscarriage at 16 weeks, also exactly one week after miscarriage I had blackout/seizure and when I came round I had wet myself yet this was never investigated as a lot of the things haven't been.
Any suggestions?
I was diagnosed with Fibro, Depression, and IBS. With those I have:
ReplyDeleteMigraines
Anxiety
Cysts in my ovaries that occur every month (I might have endometriosis or PCOS)
Rash that doctors couldn't explain, now receded to my arms
All over muscle/joint/bone pain
Sweating
Fatigue
Nausea
Stomach and Bowel pain
Hip pain
Chest pain
Redness like rosacea
Unwell and run down
Weight GAIN (I'm almost double the weight I was 4 years ago. Yikes!)
Dry eyes (thought this was due to my birth control, but have been off it since November and still the same)
Difficulty falling asleep (restless leg syndrome)
Increased irritability
Mood swings
Sensitivity to cold, light, and some smells
Sensitive teeth
Tingling in my arms and legs
Fibro fog
Easily bruised, but not anemic
Swelling in my hands and feet
Joints not only in pain, but pop when I use them (but no sign of arthritis)
Unable to concentrate
This is all I can think of right now. Lol. Been dealing with this for 9 years and only just recently was diagnosed with fibro. Glad I finally got the courage to change doctors.
Looking at your list I have all those things too lol. If it wasn't for my CPN and psychiatrist telling my GP it wasn't in my head and pushing the point I don't think I would have had a diagnosis. I feel that my doctors are using fibro as a preliminary diagnosis or cop-out rather than seeing it as a symptom of something else. Thank You for your reply every little helps and I hope my blog will help you. Stay strong xxx
DeleteNo problem. I just got the courage to change doctors this year and my new doctor sent me to the rheumatologist. My rheumatologist said it was pretty clear I had fibromyalgia. But he did some blood work to check for other things as well because my rheumatoid factor was extremely high. Blood work came back normal.
DeleteForgot to mention I had gained lots and lots of weight but since last May I have lost over a stone and more so over the last few months x
ReplyDeleteSometimes doctors use fibro as a catch all diagnosis and then stop looking for other things that may be wrong. With the positive ANA test and the rash on your face I'd ask them to check for Lupus. Even if you have subsequent negative ANA tests if you've got symptoms (and you do) then you likely have SOMETHING autoimmune as well as the fibro. Co-morbidity is really common with fibro unfortunately. Good luck
ReplyDeleteThank You so much for your comment. This is exactly what I think and personally I know lupus covers a lot of my things as I have looked into it. I believe they have tested for lupus and it was negative, I think they have done it a few times. However I know you can get false negatives as I personally know someone with lupus and when I first started to "get ill" she told me this also that she was so worried and couldn't sleep because in me she saw history repeating itself. For some reason the docs don't seem to notice the redness on my face, now I have looked at pics of the malar rash and while admittedly mine's is not as bad as some it is a lot clearer and visible than other. Also admittedly some days you can see it more clearly than others. I am doing my own research and I now know a lot about a lot of the connected illnesses and to me lupus hits home another one which does is Ehlers-Danlos Syndrome. I believe Fibromyalgia is connected with both of these diseases but how do I make them listen when honestly sometimes I feel like I know more about the illnesses than them. My original haematologist was one of the worst to be honest he was an arrogant fool who tried to tell me headaches/migraines weren't connected to Hughes syndrome (it is one of the main symptoms) and that he had never had a patient complain about it as a symptom and I just thought well what the hell am I. Got some more blood-tests done one Monday so will phone next week and see if they have my results, I know they did Lupus Anti-coagulant test which actually has nothing to do with lupus it's to do with Hughes. I'll wait and see what they say. They told me pos ANA could have been because an infection same with the start of colitis they quite clearly saw on my colon (but biopsy's were clear) but they have never though to check what infection might be. LOL You have to love doctors xxx
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