Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

New, would love some guidance!

Nov 29, 2016 7:18 AM

Hi! I'm 23 from Melbourne, Australia.
I am currently going through diagnosis for fibromyalgia. I have been going through the ringer trying to balance being my partners career, working full time, studying part time and my doctor telling me that there was nothing he could do because he couldn't see anything wrong.
I have had issues here and there followed with exploritry surgery trying to find what my abdominal pain was caused from and eventually discovered I had interstitial cystitis. I also had my gallbladder and appendix removed in this time.
The last 6 months I have felt like my body was shutting down on me, I was taking so much time of work (still am) and then when I would be at work they could tell i was in pain and would offer me the next day off.
I have taken up inferred hot yoga, completely changed my diet and experimenting with medication.
I suffer from morning to midday stiffness, muscle fatigue, pins and needles, numbness, sleep apnea, night terrors (I have ptsd) migraines, depression, anxiety, sharp pains to constant dull aches.
All started with what I thought was "period pain" and then my left knee. Felt like there was something painful in it and it has never gone away sense.
I would really love to hear what others have tried or what works for them!
So far whilst trying everything, I still don't see a difference and would love to see if I can try something different that works for someone else in hopes it will work for me😊
Or even just having someone whom understands, sometimes the depression and the loneliness is what makes it all that much harder.
You can lean on me if needed because listening always helps, and when I don't have what they are putting down to "fibro fog" I'm quite the sensei, mr. Miahgi, Buddha, wise folk, or what ever you would like to call me. 😊

Nov 29, 2016 7:42 AM

Welcome to the group. I am so sorry you are going through so much. :( I am still trying to wake up here in the US. (yawn) sometimes waking up is an all day event. But wanted to say hello. There are several here who are Fibromyalgia Warriors. And many who fight chronic pain of another nature. We are all pain warriors. Some newly diagnosed and others (like me) who have struggled with it for years. 45 years for me. Sheesh - now I feel old.

((( gentle hugs ))) have a seat hun. Read through some of the messages, get to know us. You are among friends.

Nov 29, 2016 7:51 AM

Hi KristelC, welcome to the community. I I've had fibro since about 2008(dx). One thing that helped me was I went gluten free. It cut my pain level in half. Another thing I've heard about and am going to try is quit eating nightshade vegetables. You'll have to Google that. Epsom salt in a hot bath help. Magnesium helps. Good luck with finding things that will help you.

Nov 29, 2016 8:02 AM

Welcome .. I just gave up gluten and have started 5htp in hopes of some restoring sleep.
I've just started a interesting book I ordered from my Library, it's called treating and beating fibromyalgia and chronic fatigue syndrome by Dr Roger H Murphree ... I have had chronic pain that continued since emergency back surgery 8 years ago ... My last GP finally checked and said I have the signs and symptoms of fibromyalgia. I too have PTSD with all its friends anxiety and depression ...

It's a wonderful bunch of people here ...

Nov 29, 2016 1:27 PM

Hello sweetpea 🌷and a warm welcome to the fam πŸ€—

Nov 29, 2016 5:49 PM

Hi! Ive got fibromyalgia too.. currently on lycra, propanalol, pregabin and vit d( all lifeling, all helping to an extent- they dont takevthe pain away completly but they reduce it to a point where i can work over 40 hours a week- not that i have energy for anything else by middle of week). I totally empathize with your situation.xxx

Nov 29, 2016 6:13 PM

Welcome!! I'm in Brisbane..I'm sorry you are going through this.. everyonr is gere to support you. Things get easier as you learn more about what happening. Just keep trying.
(Gentle hugs)

Nov 30, 2016 3:46 AM

Thankyou all so much for your warm welcome! As crap as it is that we are all battling it is calming to my soul to know that I am not alone.
Is hard not to shut off from the world, I am so thankful that I found this little community!
The things we do just to work and live. I wish I could do the Epsom salts but I can't get out of the bath after haha.
I am considering the gluten free option now from reading through previous boards!
I am sorry to hear everyone's struggles though, and how many years that it took to get a diagnosis.
I send all my vibes to all and hope that I can be hear to support as well as I can πŸ’•

Nov 30, 2016 4:16 AM

Welcome KristelC I also suffer from fibromyalgia and I'm still trying to figure out what works for me. It's not a one treatment works for all unfortunately. Biggest words of advice take one day at a time. Days u do have enough energy to go go go and get things done take it slow. If I use all my energy on good days I end up on bed rest for 2 or 3 days. Try what you think will fit into your lifestyle first. I wrote a post on keeping paperwork and a journal. I feel it's good info. (All my nieces do it now) find out family history if you can too.

Ok now I'm going to ask you a couple of personal questions. On your pain you experienced what you thought were PMS cramps.
Do you experience any of these?
abnormal menstruation, absence of menstruation, heavy menstruation, irregular menstruation, short and light menstruation, or spotting
obesity, overweight, or weight gain
acne or oily skin
infertility, depression, inappropriate male features, loss of scalp hair, type 2 diabetes, or unwanted hair chin, upper lip, chest, thick arm hair ect?

If so please ask your Dr. to test you for PCOS. I went round & round w/ doctors for years about my pms kind of pain and finally 2 exploratory surgery and a AZ OB/GYN Dr figured it out. Took 7 years.

I also suffer for hypothyroidism(hashimoto disorder) and a bunch of other crap.
Fibromyalgia hit me after my gallbladder was removed. And got 90% worse after a heart attack at 36.

This site has been a lifesaver and I'm glad Daniel hasn't thrown the towel in. Idk what I'd do w/o a couple people they've been heaven sent.

Hugs and prayers your way.

Nov 30, 2016 6:21 AM

Welcome to the community KristelC, I'm not a fibro warrior myself, I'm a trigeminal neuralgia warrior but all of us here in this community suffer with pain in one form or another, in many cases it's more than one dx.

It does sound like you've had a hard time and doctors don't make it easy because they don't suffer from a chronic illness, especially an invisible one and sometimes they are just rude and can't be bothered!

We are here to offer a shoulder to cry on, a listening ear when you just need to vent and to celebrate your achievements and happy moments with you.

Sending you positive vibes and hugz and I hope you have a gentle pain day xx

Nov 30, 2016 5:48 PM

Welcome KristelC! I've had fibro symptoms since 2007 but wasn't dx until 2012. But I've had many chronic pain issues for 25 years or more. And I've since developed even more, like hypothyroidism and sjogrens, both Autoimmune (AI), and both share many common symptoms as fibromyalgia has. Just a thought, since you noticed pain around your periods, has your doctor checked your hormones? Have you Sweden anyone besides your primary care. Even after my fibro was dx I knew something else was going on, several something's. It took documenting, photographing if my fingers or toes turned blue, and pressing for referrals and further tests. The endocrinologist dx hypothyroid, even with low normal blood tests, because she ran further tests and I had a CT and ultrasound showing I have an irregular shaped, damaged thyroid gland (asymmetrical). The t3 & t4 meds have helped with a lot of my symptoms (hormonal). Later, in 2014, I was dx with Sjogrens by my ENT specialist doing a oral biopsy because of a white scaly trash that would not clear up with any treatment. After the lab results came back positive and I was started on the plaquenil med the rash went away. But more importantly the excessive joint pains I'd been complaining of, along with about 50% of the muscular fibro pain, was reduced a great deal. I no longer has to take my tramadol multi times a day, which was asking to my mental fibro fog. Although it was more dx and meds, it was a relief to me, to know i wasn't going crazy.

In sharing all this I hope you will know you are not alone, there may be more than one thing going on with you (as is with many of us), and you aren't losing your mind (so many have been told or thought, including me). Document, photograph, and talk openly with your doc(s). If they aren't listening then find someone who will. I've heard to change docs, and so have others, until we found a doc who cared enough to look further. Besides meds, I have reduced sugar and starches, take vitamin and mineral supplements, and try to exercise, with stretches and relaxation. If I exercise 15-30 minutes 3 days a week I feel like I've run a marathon. If I do it more often it feels like I went to the top of Mount Kilimanjaro... achievements wise. On days I can't exercise i don't beat myself up; I take it easy. Sending you hugs love and prayers as you find ways to cope while waiting to be diagnosed (dx). πŸ™‚πŸ’•πŸ™πŸŒΈ

Dec 02, 2016 1:05 PM

Kristel, what a pretty name!! Welcome to the family! I hope that you find what you need here.πŸ’•πŸ˜Š

Ready to start relieving your pain?

Join Community