I have been having b12 injections every month for the past 9 years, I have a tremor in my hands which has never been confirmed if it is linked to nerve damage as late diagnosis. My tremor started when I was about 15 I was diagnosed with pa when I was 19 and then I was only told to start taking 5mg folic acid about 4 or 5 years ago! I am now 28 and have been suffering with joint pains which affect the wrist elbows mainly on left side and both knees. I have mentioned joint pains several times to doctors and they have said I'm over weight or blamed it on anxiety! ( I am a size 16 which I know is 'over weight') I get headaches very often and my periods are getting heavier with lots of blood clotting which I am now in the process of having a scan booked to investigate. I still get dizziness but more so when I'm really tired I feel nauseous but I am never actually sick! I can deteriorate quite quickly sometimes after eating and I can get very out of breath even just up my stairs. It would be nice to hear from other patients if these symptoms are normal similar etc at the moment I am most concerned about the heavy bleeding because I am keen to start a family and I tried for 6 months last year with no joy ( which I know is not that long but worth mentioning)
Sorry for the life report but any comments would be appreciated
Jade x
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Jadey86
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I'm not sure if my problems with B12 absorption are PA or just changes in acid levels. I was told I was B12 Deficient in hospital as result of a fall. I am in my 50s. I remember that my periods were quite heavy when I was your age but think that was because I was a bit anaemic as taking iron regularly seemed to resolve the problem. Can also relate to the aches in joints which I also associated with my menstral cycle - and in my case I suspect they were down to water retention - still get them. Water retention also aggravates my 'carpel tunnel'. I get hormonal migraines as well - each time hormones change so hit me twice a month - and for me it tends to be the gut spasms that are worse than the actual headache ... which result in everything coming out both ends at the time. Sorry - know that is too much information
Hope that the investigations show up something treatable. I know that PA can cause problems with heavy periods so hope others nearer your age can provide a bit more support, as it's all very scary and confusing.
Do you have a good GP who understands PA and you could talk to about your plans to have a family? or may be would refer you to a specialist.
This might seem totally crazy but I had symptoms like yours that started with the onset of my periods. I am now 25 years post-total hysterectomy but the symptoms didn't improve ever. Last year I changed gynecologists. She said, get COTTON pantiliners! I was still bleeding all those years from using regular dioxin/bleached god-knows-what in my underwear!! So i went onto amazon, searched "cotton panty liners" and the bleeding and pain stopped, then the joint pain turned out to be a corn allergy! That, along with ditching every single grain, including rice, oats, quinoa, all those "safe" grains improved things a lot. But finally the corn-derived ingredients in my meds were the final piece of the puzzle. I actually was immune compromised! People ASSUMED I had AIDS! That's how sick I got. It seems crazy. All my specialists thought this WAS crazy. But they cannot argue with the change in me.
I've also had lots of period problems (what I went to the doc with before my 1st b12 test). It was very heavy and I was given tranexamic acid for a while. Since then have been back on the pill. Made the mistake of missing two last month and as a result am on week 4 of my period... Doc is unconcerned! Dont think they realise how rubbish/ weak / tired and down it makes you feel. Hope you get some help. Pauline, is it cotton pantyliners to avoid laundry stuff on underwear? Or do you get them as towels too for when you have your period? Recommendation appreciated
Well, I had a total hysterectomy at 31 and that was over 20 years ago, but I was bleeding as a result of the bleaching agents used in the paper/cellulose products used in disposable pantiliners. I developed vulvodynia, along with the bleeding down there POST hysterectomy. I had malignant bladder cancer two years ago as well, and all of these things seemed interrelated to me. I had to hunt for a pelvic pain gynecology specialist at the age of 50 for all of these things. It was horrible. Imagine being LONG past your hysterectomy and only supposed to be having "normal discharge" and finding your underwear bloody. But when I saw this MD one of the first things she asked was did I use panty liners? Yes, of course, I said, I have a lot of discharge. She then asked about the frequency of bladder infections and yeast infections. "Many, many" I said. (I had a drawer full of empty fluconazole bottles dating back 18 years, keeping the bottles was my informal way of tracking treatments). But told her that the treatments never seemed to help, though yeasts were clearly present according to my old GYN doc. She said that yeasts were always going to be present but didn't necessarily indicate Infection per se. She examined me and saw that there were fine, little breaks in my skin and mucus membranes of the vagina. Of course I had horrible joint pain as well, which I was told was simple osteo arthritis and nothing more, but I was on pretty large doses of narcotics for the pain.
The pain around my nether regions was so severe that I could no longer sit in the car or drive or sit at home. I laid down everywhere I could, my crotch hurt so bad. I was actually soaking those pantiliners at the rate of 5-7 a day, then had switched to using regular "heavy" menstrual pads for bleeding. At my age!!
She was convinced it was an allergic response. She checked my immune factors (iGg, iGa, iGm) and they were super low, well below normal range. This turned out to be a combination of problems: long term mold exposure in our house, Toxic Shock Syndrome as a teen from super absorbent tampons which had landed me in hospital for a month (this was in 1977), and the unknown to me at the time sensitivity to gluten, which turned out to be genetic. But the pantiliners were the cause down below of my heavy post-hysterectomy bleeding. She told me that there were cotton disposables on the market for normal daily discharge if I didn't want to be changing my underwear all day! Lo, there they were on Amazon. Yes, I do have regular fabric ones as well which are washable. Of course the bleeding stopped very quickly and now I look back in some sorrow to my hysterectomy (I wanted more children VERY badly) which was due to uncontrollable bleeding, even on a trial of The Pill which I HATED. It likely would never had happened at all if I had known or been told that allergic reactions to tampons/pads were even POSSIBLE. They are possible, and apparently not uncommon, especially as regular TREE papers are now out of favor and corn and other veg by-products are bleached and used along with plastics. Of course, the joint pain left me as well. My trip to Mayo Clinic convinced me that immunologist was right about all the grains I was eating, though I was already off wheat. When I eliminated dietary grains, ALL grains, and ditched the drugstore pads and all the chemicals we could eliminate in our house and foods and cleaning supplies, I got better and better. My mood improved and away went the Prozac! My "migraines" should have been called "MY GRAINS" instead. Now my husband and I are ever-vigilant, even getting our cats gluten free kitty food, and they look much livelier too! We were shocked when we started reading labels how loaded with chemicals we were and surrounded by. We live in a chemical laden world.
For laundry, I gave up regular detergents LONG ago. I now buy olive oil soap from Greece via Amazon, and washing soda and laundry borax and use them in a "recipe" for homemade detergent I found in a two-minute internet search. It saves us a bundle on detergents which are pretty loaded with fragrances, surfactants etc anyway, none of which I tolerate anyhow. And NO DRYER sheets. I thought I was allergic to lanolin, but actually am NOT (that was probably something in the detergents) and I use something called "Woolies" (which are wool balls you toss in the dryer! again from amazon). They work great and last for two years at least. I can't even walk down the laundry aisle at a grocery anymore because my nose goes crazy from the perfumes. We no longer need to bleach our towels and such, and my skin all over has benefited as well. I had breakouts well into my late 40s and now I think my body was trying to detox!
I spent so much energy going to doctors who seemed not to care about me and what I was suffering. We can't control everything, but we CAN control a lot in our own lives: what we buy, what we eat, what products we use. Now I am deeply distrustful of "off the shelf" hygiene products, cleaners, prepackaged foods etc. I am now very well versed in the growing science of Epigenetics, which is how our environment and minor illnesses trigger the more serious diseases for which we carry genetic risks. I have primary essential tremors of Parkinson's but that improved after leaving grains and all the things I've outlined here behind. Everything has gotten better in fact. And knowing your genetics is very empowering. Your knowledge of Yourself is a great health asset to carry around in your head, something that most docs don't have time to deal with. Which is why I recommend genetic testing to everyone. I did 23andme but I don't know if there is something similar or not available in the UK....
Sorry to have written a book here, but maybe it will help others to hear my story!
Hi pauline19 ,
Thank you for your post, it is something so sad to read, and am sure that every woman here will be shocked at how uncomfortable you must have been. Glad for you that you eventually found what the problem was. Sad to read how long it took and what drastic decisions were mad that did not help.
Discomfort after eating has been a symptom I have had that I didn't know was a symptom. I was diagnosed three weeks ago and am stunned by all of the things that have been going on and now they all seem to fit! Thank you for your post, I hope things improve for you!
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