Signs? Runs in family. Please help.

[Vegsash]

Hey everyone.

So my grandmother had fibro and I think my mother may as well. I've been researching some symptoms of fibro and have found a lot that march what I've been dealing with for 8 years, but doctors don't want to listen to me.

I have widespread pain across my whole body, I have constant pain in my neck, back, hips and feet everyday,(aching, sharp or dull) but then I get pain everywhere else sporadically. Like one minute it'll be my arm the next my leg and so on. For the past few days my legs feel like they're being pulled out of socket almost like accompanied by a whole body flu like ache and my muscles get very fatigued doing the most minor of tasks. Taking my shirt off, brushing or doing my hair, laundry, working..

My jaw muscles clenched often and my mouth, tongue and jaw often get fatigued when eating! When I bend down to get stuff my leg muscles burn and feel like I've ran a mile and they get really weak and my arms as well.

I wake up feeling exhausted, even after 8-9 hour nights. I have RLS as well so is also hard to get comfortable.

I have anxiety and depression now and frustrated easily:

My hair is falling out in the shower like a lot.

Even sitting or standing absolutely hurts me. After standing maybe 5 minutes I need to sit because my torso area hurts.

I have a hard time remembering things. I'll stop mid sentence and forget what I'm saying or mix up or forget words often too.

I have become very sensitive to cold weather and areas, I didn't use to. I even get really hot when others are warm. My face often turns red (idk if that's a sign or not)

I get migraines and headaches almost every day.

I've also been getting sores in my mouth at times, chew on my cheeks at times too. Constipation, indigestion and heartburn as well.

I go to a doctor on the 22nd and asking her for a refferal to a rheumatologist because I want answers. I've always felt I had fibro but not doctors would give it the time of day to listen to me. They all accused me of wanting medication, but medication doesn't work on the pain anyway!

Please help.

 

[Chexmix]

Unfortunately we can't diagnose you but what you say has a very familiar ring. Yes, there is some sort of family component....nature? nurture? Who knows?! My mom has it, I have it, I pray daily my child does not! Sounds like you are on the right path, now you just need to find a provider that will stand behind you. I actually got my diagnosis from a primary doctor, have never seen a rheumy. Although when I pressed for what they were going to do about my 24-7 pain they asked..."have you ever seen a rheumatologist?" Ummmm, no, I was seeing you! I was advised the pain meds are for people who are really suffering. There is some information in history of this forum about pain journals. You might want to document daily happenings to clarify what you are going through...might find triggers like food or drinks and it will be informative for providers. Good luck! I hope you find answers soon!

 

[Blueeyes1]

When my mother was asked if she had a daughter and I am the only girl out of 5, the doctor said that I will get FMS. My brothers and I all carry it but I am the one that has FMS so it is most likely inherited. Now, I have two girls and one boy and they will carry but one of my girls will get it just like me from what my doctors have said. I was diagnosed through my Rheumatologist but my meds were given to me by my family doctor or from the pain clinic I was at. I am not on meds for FMS though as my body rejects meds. I have kept a journal for the past 4 years which has helped a lot. It tells me what I did through the day, my symptoms, pain number from 1-10, weather, activities, sleep, EVERYTHING and it shows how much worse I have gotten over the years. If a doctor asks me a question, I can answer it. If your doctor won't listen to you then you either need to get a new doctor or like you said go see a Rheum. Your symptoms are right on and probably more to come or some you just forgot. Good luck! I just recently joined this forum and it is great to see how many people can relate to how I feel and what I have gone through. All the best! Sheri

 

[Loftpat]

Excellent advice from the two previous posters. I will add my vote for keeping a pain journal. Not only does it help you figure out what's hurting or helping, it helps you remember what you need to have for info to talk with the doc. Seeing a rheumatologist is a good plan. If he/she is worth her salt, you'll get some answers and a bunch of tests to rule in or out other things like Lyme disease and rheumatoid arthritis. I hope you get your referral. Keep coming here as well, there are lots of words of wisdom from those in the trenches.

 

[Vegsash]

Thank you all for your replies. I have another appointment set for the 4th to get some tests ran and I believe some scans of my brain as well. The. She said would put a referral in if she didn't find anything. Thank goodness she actually seems to be sincere and companionate doctor. She gave me some pain relief of tramadol to last until I get into her on the fourth. So hopefully it helps. I've missed a lot of work due to this lately.

I have wrote down my symptoms for this appointment but I'll also keep a journal for myself to look at what triggers it and what not. Thank you all for the great advice!

 

[diamond]

It does sound like fibro and i could have written every word of your post...infact as i started reading i thought it must be mine.

I have read that it is hereditary and there is about a 50% chance of passing it on. I think some of it also depends on lifestyle and what is thrown at you stress wise as to what level of symptoms you develop. Mine have got worse each time a big stress or to much pressure is put on me on top of how stressful it is coming to terms and living with a chronic life changing illness.

Good luck on the 4th.

 

[lunie74]

There is something I don't understand about it being genetic. It's the compinent.if it being triggered by a trauma. So if your (or my) child doesn't go through a trauma (hopeful thinking) they wouldn't get it?

 

[diamond]

Oh Lunie none of us could say anything for sure or are qualified to make medical statements or prognosis.I am just recalling my personal experience and opinion through living with and how fibro crept up on me and what i have read and a few people i know with fibro and CFS.

Everyones story is different. In the UK i don't even think the doctors recognize the hereditary element.

It is just my opinion that maybe keeping stresses /trauma down may mean you don't develop full blown fibro perhaps don't get any symptoms or just minor ones at least for as long as possible as i just had periods of fatigue on and off for many years from my late 20's but also felt very well and normal for long periods...months years in between until big stuff happened to me in my late 40's and pain came out of no where.

I keep my fingers crossed for all our childrens' future health xx

 

[lunie74]

I hadn't heard of the heredity possibility until now. So much of it seems so unknown. I'm so sorry for each of us here. This is dreadful sickness. Although for me, it's sure better than the last 6 years of not knowing. I'm just trying to understand all I can.

 

[diamond]

Yes ofcourse you are... its good to learn and use anything that helps you personally to get through. It is the unknown every day which makes it hard for our minds to cope too.

 

[Vegsash]

I've read in several places about it possibly being hereditary and if your family has it then you're more likely to have it as well. I also believe my mother have it too, as she has many symptoms I have and have read up on. I'm just hoping and praying for a diagnosis so I can get the right treatment and help that I need. Finally people around are starting to believe me and understand.

 

[Vegsash]

And when my mother came to visit I took 4 days off work, but we did Christmas at my house and had some running to do and went to the mall. These made me so exhausted and in lots of pain: at one point we were at a restaurant having dinner and I was in horrible pain and forgot my pain medication, trying to make it a while between pills to see how it's acting. And I almost threw up and went to the hospital. They kept asking if was menstrual cramps, but there were so far worse and I have had my menstrual cycle for a month and I'm not pregnant. It was scary though.