Hi I am new to this but want to put my story out there to see if anyone can suggest anything I’m not doing already.
I’m 29yrs old and have always dealt with pain on a smaller scale with Coeliac Disease going undiagnosed for about 5yrs and anaphylaxis to Wheat and other food intolerances. Diagnosed with Endometriosis, PCOS and Adenomyosis and Metabolic Syndrome.
4yrs ago I had my first child. Pregnancy went smoothly and was able to work and felt great! I had to be induced 10 days over due date, went to the toilet through labour and that where my trouble started. The nurses didn’t get me off the toilet but instead brought the equipment to me. The pressure of sitting on a toilet with contractions made me swell like a big ball and I thought it was my sons head. Then my body couldn’t help but push even though I was so swollen. They should’ve rushed me to C-section however the kept calling the doctor and he wouldn’t come in. Since then he’s been banned from the hospital. I ended up have to get a epidural to stop the pushing and it helped bring the swelling down enough for them to check dialation. No choice but to push and I was pushing for 2.51hrs. Got 3rd degree tearing, significant 3 compartment prolapse and markedly enlarged levator ani which makes surgery complicated as it’ll either fail or not be long before it all prolapses again. I also have severe pelvic muscle and bone pain and disfunction. It has taken me these 4yrs to get results as no doctors would listen so I had to move my family to somewhere I knew I could get help and results. Meanwhile I had another child who is now 2.5yrs old and had they picked up all the damage they most likely wouldn’t have let me give birth vaginally again. After my daughters birth I developed Fibromyalgia due to emotional trauma seperate from the births.
I have so many other symptoms which can’t be explained and haven’t been diagnosed and it is so so painful.
My ankles keep seizing up and I feel I need to crack them but they won’t and the pain radiates up the leg leaving me wanting to chop my foot off to take the discomfort away. My knees lock up and extreme pain on the sides. My hand joints seize up too and feel I need to crack them. I have psoriasis on my knees and ankles and my scalp which I have to scrap back from scalp every couple of nights.
I am not allowed to do certain exercises due to prolapse and so hydrotherapy is only safe exercise. I want to lose weight but I can’t even though I eat health.
Anaphylaxis to Wheat and Salicylates and Armines and Seafood. Coeliac Disease (gluten) and extreme pain reaction to all other grains besides rice. Very limited with food.
Colorectal surgeon and Urogynocologist has decided on about 7 surgeries within 1 operation including a hysterectomy. They’ve said that I will most likely be in more pain that before however with the bowel the way it is (medium rectocele and bowel comes out of anus 3cm) they need to operate due to risk. If they operate on bowel they need to do the bladder and vagina prolapse too. They’ve done a multidisciplinary meeting to discuss and next time I see them they will be saying what happens if operational keep failing. They’ve said in the past possibly bowel and bladder bag. Intimacy is extremely difficult now and after this operations they’ve said most likely will be impossible.
I also have stress incontinence which they can do surgery to help and then urge incontinence where the bladder contracts which is treated my tens machine and future medication.
Family history of all the rare arthritis however show negative in tests. Great uncle diagnosed as a diagnostic dilemar. Same age as my great uncle, Nanna and mother when my body started developing all these pain conditions.
Anyone can suggest anything to help with any of these conditions or multiple would appreciate. My 4 and 2yr old have all my allergies and both get very tired and swollen and tight muscles. Sons knees buckle underneath him however X-rays show up negative like mine and my uncles...
Wow, what can I say. I think maybe the Fibromyalgia diagnosis is probably the least of your problems. I'm not sure if anyone here on our forum can help you in general terms, because you seem to be the only one with so many problems. And I'm really sorry to hear that too by the way. Especially seeing you are saying that it seems to have been passed on to your kids. That is terrible!
I have suffered from Fibro for decades and yeah it can be debilitating, but at least I don't have to worry about it, because it isn't going to kill me. It just gets to hurt me a lot. And knowing that pain in most cases is fairly harmless, then I don't stress out over it, but just try to deal with it and then get on with my day. Sounds impossible, but it isn't so hard once you get into the right head-space.
I have suffered chronic pain for 57 years. I don't know what it is like to not have pain, so I can actually get by with quite a bit of pain and not let if stop me. Don't get me wrong, I am on a disability pension and unable to work, but can do some volunteer work, which has been good. The fact is, if you have the right kind of mindset, you can actually accept a certain amount of pain and not let it get to you. You probably already do this. Heck, with all that you have wrong with you, I'd say you are probably better at it than I am. All I am trying to say is that Fibromyalgia is not the devil that it can seem to be, IF we keep some measure of control over how it affects us.
Please do as much reading on our site as you can, because you may pick up some tips that way. Try going to our General Discussions tab and write an intro in the 'Introduce Yourself' thread, which will give you access to many more members.
I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
Yes I’m pretty good a dealing with pain and feel I’m pretty strong considering I’ve hit so many road blocks with doctors and have struggled finding supporting doctors. I’ve had to keep pushing for answers. I’m the kind of person who wants to know what’s wrong so I can do absolutely everything in my power to manage or fix things. And that’s what I do. I’ve done everything they’ve suggested but still don’t see a difference. My mum and grandma have fibromyalgia and it affects them with flare ups etc however I feel like I’m in a constant flare up and doctors say it’s due to how complicated I am with so many issues being wrong. They’ve rejected me for Disability pension (not because I don’t have disabilities) because I wasn’t in a stabilised condition. And the fact I’m still waiting for operations they’ll prob still reject me but my issue is ... when will I be in a stabilised condition?? I do everything they tell me to do and then all of a sudden something else goes wrong. They’ve already said I’ll do these ops and I’ll be in more pain after. I need the support pension but it’s soooo hard to get approved. Any suggestions? Been approved for Blue Care and NDIS