Just wanted to ask a few things. My pain can be quite bad at times but isn't disabling, will it usually get worse as time goes on? Or are there people who just suffer quite mildly long term? I'm only 28, and planning a family with my partner, so wanting to know if we should do it sooner rather than waiting if this is likely to get worse. Thanks in advance Sarah
Unfortunately, like Flappsy, mine worsened over time and in the last 22 years I have had 26 surgical procedures to try to help my pain and make things better. All it ever did was make things end up being worse. That is not to say it happens that way for everyone. I hope that you are one who does not get worse and can carry on some sense of a normal life without suffering to the point of being bedridden like myself and many of us here. Best of luck to you.
Sorry to say mines got worse from a few pains to exhaustion and using crutches /walker inside and wheelchair outside. Too weak to push myself so have elec one but at least I could get to top of garden and hang out washing lol. Brain fog defiantly worse as is any balance. I've been diagnosed since 2011 and dread what future holds. Being sent to see Rheumo, Physiotherapy and Physiologist
Fibro is Lyme disease. I got hit by a semi and had 9 surgeries then bit by a tick and fighting aggressive lyme and many co infections like bartonella ehlrichia anaplasma and Mycoplasma. Fibro is a symptom not its own dx. Youtube dr Horowitz 8min video on lyme. Look up low dose naltrexone alao for ur fibro pains. Great for auto immune diseasea. And the immune system and Lyme disease and cancer etc ♡
Sarahjane, I suffered two years with various IBS, GERD and other abdominal symptoms. Multiple doctors chalked it up to my IBS. Then in 2010 I began bleeding vaginally (I had no uterus or ovaries). They found a large mass and for the next 1 1/2 months I survived on 8 oz yogurt a day. When they opened me up I had a hernia repair, scar tissue/adhesions & endometreosis removed, an appendectomy, then removing the 10 cm mass which was adhered to the bladder, rectum & intestines, they damaged the bladder causing a hematoma that required additional surgery to place stents and a bladder bag (1 month later surgery to remove it all). Three days post op I developed an ileus of blocked bowels and had to be intubated; now I can't throw up.
To say it was traumatic is really an understatement. It's made me real distrustful of doctors... I question everything. I'm also scared to have surgery again. The surgeon is no longer practicing. I could probably sue but "vengeance is mine says the Lord."
As for you having kids, I'd advise the younger you are the better. I'm 53 and nature has a way of wearing us down quicker as each decade passes. For the record, all my symptoms and pain isn't just fibro. I have hypothyroidism & sjogrens, diagnosed this year, and they share common symptoms with fibro. I call mine a "triple header" when it flares! Lol
Mumof3, Don't feel alone. I have the brain fog & dementia, right side while body weakness, imbalance that requires I use a cane, walker, or sometimes a scooter, and most recently tremors. They're sending me to Mayo because they suspect something more than fibro.
I'll add you all to my prayers. May God give us the strength to find our way through this.🙏🌼
I had trauma aged 20 when I stepped out of a van into a grass hole, ended up twisting my pelvis but they put me in traction for 6 mths in bed & wore a plaster cast from neck to hip all day - I looked like an upturned turtle. However that's how my now hubby proposed to me. I've had 27 eye ops since age 8 on same eye rectifying a port wine birthmark in eye (very rare). I suffered back and neck pain for years after pelvis and had sciatica for years. Always had ibs . Suffered whiplash from being hit behind. Had two very early births and had major problems with dad growing up, I'll say no more about it. My mum suffered CLL and then died with bowel cancer that's when it all kicked off 2011. Now they say it fibro, ibs, anxiety, eye haemorrhage and FND (functional neurological disorder) altho CFS is also on cards
Mumof3, that's a lot of trauma. There are some reports that say fibro can begin as a result of trauma. IBS is generally coexisting with fibro too. I've had IBS since my teen years, but fibro came around 08-09. Just stick with us and we can all help each other through. 🙏🌼
I don't think I've been tested for Lyme but have regular blog tests for SLE. I'm from UK so didn't think Lyme was as rife guys. Thanks Flappy I didn't realise my own trauma til wrote it down. Devastated when mum died.
Mumof3boys - That's a lot to go through. I'm in the UK too. I've got two little boys :) It's nice to have found this community. I had problems with my step dad which resulted in my mum throwing me out while doing my GCSE'S. I got into a relationship with the wrong man at 18 years old, and had my two boys. Moved out of my hometown, so away from all my old friends as well. I'm 28 now, my children are 7yrs8mths and 3yrs5mths and with my partner for 2 years. Still battling depression and now this, when will life give us all a break?!?
Sarahjane sounds like you have your hands full. We are lucky to have family support tho I know. Some are not so lucky. I just hate the fighting it's soo vicious at times brings my stress levels to the roof. My 9 yr old is in the young carers club at school and he deserves it bless him, they took them to zoo last week. Weekend I usually stay in bed getting energy levels back but with hubby and eldest away I've decided to take them cinema. I can always fall asleep watching film lol. Spose in a way gives me trial run as eldest (who does most things Inc cleaning) is off to Uni 7 hrs away :( have to leave the nest I know.
Mumof3boys I agree about the stress levels, I have been stressed out waiting for results and the pain definitely seems to be worse. That's lovely that there's a club for your 9 year old :) and I'm sorry about your eldest... 7 hours is a long way!! Great that he's off doing a uni course though. Gentle hugs ♥
Awwh that's so lovely! I'm a creative sort of person too, so that really sounds amazingly exciting :) It'll be hard for you I can imagine, but knowing he's doing something he loves must be a great comfort :) xxx
Mumof3boys, I've never heard of FND so being the curious person I've always been, I looked it up. I haven't finished reading it, but wow! I actually have some of the same symptoms, and a neuro-psychologist that evaluated me wrote, "in my opinion the patient has possibly a conversation or somatization issue causing these symptoms. I ordered her psych counseling at no cost to her but she declined.". My husband was furious when he read it! I can't repeat what he said about that doc but it was uggggly. Lol. The neurologist who sent me to him disagrees, so he's referred me to Mayo. He said he knows what's happening to me is not something i am causing or controlling. I sure hope Mayo gets the answers for me!
You are a special and good mom. Just because your kids have to help out, that is teaching them equal responsibilities. My sisters and I were washing dishes, sweeping floors and cleaning bathrooms at the age of 5. My brother only had to empty the trash... Not really a good thing. He never married and always lived with parents or grandparents. He lives with our 2 sisters now, all unmarried. He barely helps cut the grass or take out the trash. He was raised that housework is women's work, yard work is men's work. But he sits and waits for them to get tired of waiting for him to do it...then they do it themselves! Mind you, my brother has a learning disorder from birth, but he learned to let others wait on him hand & foot. My parents & grandparents did him a disservice buy doing everything for him. You are teaching your children equal duties, and compassion for others, and that's great in my opinion! That's part of what makes you a good mom! 🙏🌼
I don't have a current diagnosis of Fibro, but I'm expecting one whenever the docs decide to quit on me. I know that happened to my aunt, who's now in a wheel chair but I don't know if she'll get much help. Grrr....I'm just frustrated, I guess. Seems like many symptoms of things could fit me, but no doctor seems willing to admit they're oddly all different versions of the same thing. Then again, I could be totally wrong. I guess I just font trust the comfort I've seen with docs diagnosing Fibromyalgia compared to other possibilities. The word basically means spread out body pain. If I had been seen late stages of CRPS (when I went from red and swollen to pale or blue), I might have gotten a Fibro diagnosis, and that was one of the first things that came to mind for my neurologist.
Leabea, I agree about low dose Naltrexone, it also seems to help with energy and nerve regeneration, but I'm not sure why.
I suffered for 11 yrs, before the Specialist I went to in Houston finally told me tha I did have Fibro. I already had the Diagnosis of Syrinx, Syringomyelia, and Osteoarthritis, as well as Degenerative disk disease, as some others. I find it hard to tell when my Fibro is acting up because of everything else it all acts the same way except for the fog.