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No Diagnosis

Sep 11, 2015 10:34 AM

Anybody else out here with no diagnosis? I've been living with all of the symptoms of fibromyalgia for 6 and a half years now but can't seem to get a diagnosis. I've kind of given up.

Sep 11, 2015 10:41 AM

I totally understand it's very frustrating I was given a diagnosis in 2000 but yet my doctor neglected to inform me that he diagnose my pain I have fibromyalgia by the way he let me know after I lost my job lost my home and was destitute then it came out and other medical records that he had diagnosed me with fibromyalgia so all I can say is continue seeing Dr and keep telling them over Andover Andover I know it sounds frustrating but that's the only advice I can give you I still see Dr to help me over and over and over and my life completely fell apart in 2010 and I'm still shouting from the rooftops the nice part about catch my pain and this app is the community that helps keep encouraging you to keep moving forward

Sep 11, 2015 7:36 PM

Some docs are quick to diagnose fibro, while others don't want to diagnose differential diagnoses. I don't know why. My neurologist helped me out a ton with knowing what to look for as a diagnosis. My dad had suspected CRPS, but was hoping it wouldn't be a diagnosis.
I had all the symptoms of Fibro, until I learned how to describe my pain. It turned out it wasn't full body ache at all. The burning pain started in my wrists, then migrated or spread. The pain wasn't always noticeably there.

Sep 11, 2015 7:37 PM

Don't give up Tiff123. I started with symptoms 3-4 years before my doc mentioned fibro, and it took him another 2 years to assign the dx. He also hinted at me having symptoms of thyroid trouble. On a fluke MRI for another problem my thyroid showed damage. He still blew it off so I saw an endocrinologist, and I'm being treated for hypothyroidism. And due to additional symptoms and positive mouth biopsy, I also have Sjogrens, dx by a rheumatologist. Don't give up. Go see another doctor for a second or third opinion. Rheumatologists are wonderful if your bloodwork shows inflammation, which mine did and has done since 2008. You're in my prayers. 🙏🌼

Sep 11, 2015 8:05 PM

I have chronic pain diagnosis and a new diagnosis of adenomyosis but sincerely if it weren't for a cocktail of meds and supplements I can't function. I'm 31 and so tired of this. I just had a CT today and hoping for a diagnosis with hope for repair. I'm so tired of hurting. I do everything diet wise and health wise I can to help it but fear it's only a losing battle. I saw a therapist for pain the other day who told me about apps like this and it's comforting but sad to know I'm so fat from alone in this. Best wishes and support for you all.

Sep 11, 2015 9:16 PM

Welcome Birdsmith! I agree it's sad there are so many of us that we have communities like this. I hope you will find the compassion and support here as I have. I'm 54 soon and its hard to think I could live another 20+ years this way. But I rely on my faith in God to keep me strong. It breaks my heart at so many younger than me here. And I've met so many wonderful people here. It's like having a very large family or group of friends available 24-7, and we all understand so there's no judgement when we need to rant, cry or ask for prayers of support. 🙏🌼

Sep 11, 2015 10:47 PM

Thank you. I really appreciate the support. Today was especially hard. My pain therapist says she's counseled 12 year olds with chronic pain.. my heart sure breaks for them knowing how hard it is for is adults.

Sep 11, 2015 11:00 PM

Bird, I'm 15 and have had increasing chronic pain all my life. Now, I'm in remission from one of the worst known diagnoses on the 0-50 (I always forget the guys name, sorry) pain scale, CRPS. I believe in research and alternative medicine, having had so many prescription drugs make things worse.
I even once got a laugh from the side effects on an inhaler. "Not for use in children. Don't use if you are hypothyroid. Not recommended for people with autoimmune issues. Increased risk of death, especially in teens." Umm...did my doc even read it? I guess not. I just said I'd felt suicidal, and anxious (I had felt anxious at the shear fact that my doc recommended a med with all those side effects)
Now that same doc won't prescribe ADHD meds because I'm "too complicated" and now we can't get into any place that could prescribe, unless we pay out of pocket to someone who doesn't specialize in my type of issue.
Hey, if you can, try to laugh. Life really sucks sometimes, but if we were on the outside looking in, it would be hilarious.

Sep 11, 2015 11:17 PM

Dang good for you for your positive outlook. Today just kicked my butt. I usually try to stay strong and keep doing everything I can, just have those breakdown moments.

Sep 12, 2015 2:29 AM

Welcome birdsmith! Wish it were under different circumstances. Don't feel bad for breakdown moments...we all have them..I'm having one myself at the moment and I will be grateful when its over and i can get a little peace... even if its just for a short time.

Sep 12, 2015 4:02 AM

Tell me about it? Still recouping from a long day and awake cleaning... cause kids, cause pain.

Sep 12, 2015 9:28 AM

Tiff123
My physiotherapist was the first one to recognize my symptoms as being fibromyalgia. It took the Drs around 8mths plus two specialist visits the the rheumatology dept. of the hospital before my Dr recognized my symptoms. My advice would be to see a physio or chiro. I recently went to a chiropractor in relation to headaches from the fibro. It didn't work for me. But the chiro knew all about fibro as his mum had it.

Sep 12, 2015 10:27 AM

8 years & counting with no diagnosis chronic pain & joints which sublux daily, I've only just been given a referral to rheumatologist to see what they can advise me, I've had to fight for this referral yesterday was the day I finally just shouted I need to know what's wrong I need to know if it's hereditary I have children to look after I need to know there not going to suffer like I have GP finally said ok I'll refer you I'm 35 I can't go out by myself in case I collapse with pain/knees subluxing I walk with crutches & sometimes have to use wheel chairs, I cry everyday with the pain but I'll keep fighting cause it's all I can do to try & get my life back.

Sep 12, 2015 4:08 PM

Sublux35, I totally relate. I have tremors, dizziness and imbalance now, and at 54 I'm using a cane, walker, of scooter, whichever is needed. I went to a baby shower and only two other women had a cane, both agree 70+, and they moved and walked much easier than me. But I refuse to give up trying to enjoy some good things in life. Now I'm sitting at home with my legs elevated. Sitting in the slightly padded chairs for 2 hours, my legs are stiff, throbbing and ache all over. It hurts to walk but it will pass, and I was glad to laugh and share in the joy of the expectant mother. 🙏🌼

Sep 13, 2015 10:22 AM

My doc flat out said she can do nothing for me. I want an MRI to rule out ms but she wants to see what this round of blood work says. Uugghhh!

Sep 13, 2015 11:18 AM

Hi Hoot .. is it possible for you to see another doc for a second opinion? I know these processes are a royal pain but I've found them to be a necessary evil. When I first started getting sick I knew damn well something was wrong because if thiers one thing I know better than anyone is my body. It took many more years than it should have and in the end I was right .. I was sick....even tho sometimes they make you feel like your crazy and its all in your head don't let them brush you off.

Let them do thier blood work. . Then ask again..if the doc doesn't comply go to another doc.

I hope you all find answers soon.. i know how hard it is to know something is wrong but not offically have a finding of what it is. ((Hugs))

Sep 13, 2015 5:07 PM

Hi Hoot
I went through almost two years of no diagnosis. Mri showed nothing. Bloods nothing. My physiotherapist was the first one to basically come up with the fibromyalgia diagnosis tnen the rheumatology dept in hospital confirmed it. Good luck hope this helps you.

Sep 13, 2015 5:23 PM

Be happy they even know what fibro is nowadays. I went 15 yrs without a diagnosis. Test after test after test after test.. I even gave up for a few years thinking I was a hypochondriac. Finally after asking to see a rhuemy.. I was diagnosed with fibro. If that wasn't bad enough.. for about 5-10 yrs after my diagnosis.. the medical community, insurance companies and workplaces thought fibro wasn't a real condition. At least now they know what it is and its considered a real condition.

Doctors totally dropped the ball on the myofacial pain syndrome.. I have been dealing with this for about 30 yrs and no one could tell me what it was.. I asked everyone from my family doctors.. to rhuemy dr. to massage therapist, chiropractors, physiotherapists.. etc. no one knew what these tons of painful bumps all thru my muscles were. It was only until I found it online that I knew what I was dealing with. I don't know if they don't know about the condition or if mine is so severe that they didn't recognize it as such.. but its been brutal. Stretching and working the knots out with deep massage techniques are the only things that really get the knots out. Other things like advil and heat rub lotions help with the pain as well.

Sep 13, 2015 5:50 PM

Hi Tiff, hope you are not suffering too much right now.
I went from no diagnosis' to so so many!!
Back in 2012, I fell off a horse I was training and hurt myself pretty badly. Refused hospital in my usual manner and ignored pain etc and was riding the very next week.
It wasn't until the following May, some 8 months after the fall, that things started to go downhill. I'm forever thankful to the GP's at my surgery recognising that something was going wrong. Except for the first GP. She brushed it all off with 'lose weight and exercise more.' I was doing a lot back then, serious training amounts of exercise. She ended up being disciplined because she missed the obvious. She left the surgery a year later.
I was diagnosed in September of 2013 with fibromyalgia by a rheumatologist. Then at the end of last year my health took another dive, landing me in hospital. Yet more tests were done and just last week (although they knew months ago) I was diagnosed with Bronchiectasis and significant allergies affecting my lungs. The respiratory doctor called me an allergic person. Almost anything can set it off. Even air conditioning.
At the end of last week I was also diagnosed (by my new doctor, moved surgeries when I moved house) with low iron levels and my thyroid is flagged, yet again. She thinks it's hashimotos but won't confirm until the next blood test is done in November.
On top of all this I have Anxiety issues, depression, asthma (dx back when I was 16) and twitching. My anxiety is triggered by stressful situations and it can throw my blood pressure sky high. Last time I was bad it was too high and had to be repeated the next week. By then it had lowered and when it was checked again last week, it was on the low side! It yoyos a lot because of my anxiety and stress levels. Would love to have a reading done over a period of a week to see how much it fluctuates.
Anyway, I sincerely hope you are seen by the right GP to get the proverbial ball rolling and you have any health problems diagnosed and treated ASAP. It's worth trying alternate GP's if one is reluctant to help or act. The sooner you get help, the sooner you can begin to come to terms with it and learn to deal with it more effectively.
Big hugs,
P.

Sep 13, 2015 6:00 PM

I had 43 years of trying to find a diagnosis. It took my cousins son getting diagnosed with hEDS to get someone to agree that the pain wasn't all in my head. Once he was diagnosed it was like a dam broke in our family. It turns out that everyone in my family has at least some of the symptoms of it. So many of our problems were explained very quickly after that.

The sad part was that my shoulders started dislocating before I even learned to walk. I have fallen UP the stairs more times than I can count. I fell down two sets of stairs when I was four and all I got out of it was four stitches. I fell from the top of four wooden steps to the bottom of 13 concrete steps.

Just last fall I sprained my knee putting cinnamon rolls in the oven, then a month later I dislocated ankle walking down the hallway.

Good luck on your journey to better health.

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