New to Group & Learning to Deal with Fibro Diagnosis

Status
Not open for further replies.

Blinkers

New member
Joined
Mar 21, 2022
Messages
5
Hi, I'm new to this forum. After being diagnosed in 2019 with fibromyalgia, I'm finally coming to terms with believing the diagnosis is correct, and what it means for me.
A little history first. I am a very active person, and always have been. I was a short distance runner for awhile but after a few injuries, I turned to the stair climber and elliptical. However, pre-running and gym machines, I experienced my first "locking" joint at age 16. I was working at a fast food restaurant bending down to stack meat and when I tried to move one of my ankles (I think right), it was locked in place and extremely painful. From there it swelled up and I was unable to walk on it for days. X-rays were all normal. This sort of thing happened off and on to various degrees from then on. The most recent being March 19th when I woke up, walked a bit then felt a lot of pain in my right ankle. I tried to move it around as it sometimes stops the "locking" but it became stiff and stuck in one painful position. I got a phone appointment with a Kaiser doctor who I had NEVER seen. After NOT reading my chart and listening to me describe what happened just that morning, she diagnosed me with gout. Pretty much sure her diagnosis was wrong, I went to the ER for x-rays and hopefully more. The doctor at the ER was stumped and even asked if I might have slept walked and tripped! He sent me home with some Naprosyn and a referral to a rheumatologist-- but no urine and no blood work were ordered, and I was too tired to fight for lab work. I sent a message to my doctor who ordered both urine and blood work, and I saw a rheumatologist who also ordered more blood work. Bottom line--everything was normal, except my pain and locking joint(s).
Flash back to 2019. After a weekend of a lot of driving, I woke up with super stiff and painful muscles, and it felt like every joint was out of place. My gait was unstable, and I seriously felt like I went from age 54 (at the time) to age 90 overnight. This went on for weeks and I did go to my doctor at the time, who referred me to a rheumatologist. Blood and urine were collected--all normal. CT scan on my brain--all normal. The final conclusion was a diagnosis of fibromyalgia, which I wondered if I was just being diagnosed with as there was no where else to put me. I was also allowed to go to a chiropractor who kept making remarks like "A TRUE fibro patient would feel this, or wouldn't feel that..." etc. Leaving me to believe that he didn't think I had fibromyalgia, and/or he thought doctors put people in the fibro category as a catchall when there is no other diagnosis due a patient's normal tests.
My symptoms current and past are: lower back pain/instability, right side pain in rib area (a ton of testing has been done and nothing found), locking joints, joints feeling out of place, sore and stiff muscles, a lot of skin issues including unexplained rashes on face, eczema, red eyelids, solar purpura (diagnosed a few months ago)-https://www.verywellhealth.com/solar-purpura-5188935,. At the same time I was diagnosed with solar purpura, my right hand became super swollen just from kneading some bread for 5 minutes. Ever since, two of my fingers on my right hand are constantly swollen and become stiff a lot. I can no longer wear a ring on my right ring finger. I've also have/had stomach issues, dry eyes, intolerance to heat, depression, and Raynaud's disease- and I also had Sever's disease as a kid--.I've also always had issues with certain materials and textures. The thought of even touching certain fabrics/materials/textures can make me want to literally throw up.
Although I can't be sure as I don't recall all of my episodes after 57 years on this planet, but it seems to me they all started in the spring or when the weather got warmer. I don't know if all of these symptoms are related or how many, if any, are independent of each other. At 57 I'm sure I have a fair amount of osteoarthritis, so it's difficult to decipher what is causing what when it comes to joint pain and stiffness.
What I'd like to know is do any of these symptoms that I described NOT sound like fibro? Has anyone else had a medical person infer that their fibro may not be the correct diagnosis, or perhaps they don't believe in fibro at all? Does anyone see a correlation with spring-like weather/blossoming of plants and a flare up? Any other thoughts and advice would be welcome as well.
Thanks and glad I found this group!
Kathy
 
Last edited by a moderator:

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,309
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Hi Blinkers, (Kathy) ...and welcome to the forum. I will write a proper response to your post in a bit but first I wanted to let you know that I have edited your post to remove the outside links you included. We do not permit the posting of outside links in this forum
Please read the forum rules, so that you will be familiar with them for future postings.
Thanks. :)
 

Blinkers

New member
Joined
Mar 21, 2022
Messages
5
Oh! I am so sorry!!! I only included them because I was afraid people wouldn't know what Raynaud's or Severs were. Thank you for removing them for me. I will be more careful in the future. :)
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,309
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
No worries, everyone is new at first!

The thing about fibromyalgia (we say fibro or FM here sometimes) is that it can only be diagnosed by eliminating everything else that could cause the symptoms. It sounds as though that may have been done by the various doctors trying to find out the source and cause of your difficulties. If so, then it is certainly possible that you have FM. If you were to start doing the things that are helpful for managing FM, it couldn't hurt.

a chiropractor who kept making remarks like "A TRUE fibro patient would feel this, or wouldn't feel that..." etc. Leaving me to believe that he didn't think I had fibromyalgia, and/or he thought doctors put people in the fibro category as a catchall when there is no other diagnosis due a patient's normal tests.
Now this is unfortunate. This chiropractor does not know a thing about fibromyalgia, unfortunately, and it would be wise to find a different one who is up to date on this. The "pressure point" tests were debunked years ago, because pain migrates and everyone is different and I, for instance, have that "test" three times. Once I just about screamed, once it was painful but not bad enough for me to say anything, since I was not being asked, and once it didn't hurt at most points. For this reason, people who know Fibro never try to use it these days.

A lot of what y ou say is experience by others here including myself. Many of us have done research and experimentation and can offer you advice and support. Everyone is different, so remember that if someone tells you absolutely never to do something, or that something magically cured something, it may or may not have the same effect for you. The bottom line is with FM you have to be your own laboratory and your own experimenter to find out what helps you.
You are entirely welcome here, and ask all the questions you want. :)
Or, come here to vent if you need to. We are here for you.

Here is a post that will help you get started:
 

Blinkers

New member
Joined
Mar 21, 2022
Messages
5
Thank you so much for your reply. I meant to also ask if anyone else has, or had had, Raynaud's, Sever's disease and/or solar purpura?
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,944
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Raynaud's, Sever's disease and/or solar purpura?
Hi Kathy and welcome in! 👋. I have Raynaud's (5 pairs of socks), others here too. The other 2 I doubt, but Sever's disease sounds like a good orthopedist and good physio can help, and solar purpura sounds like (but not as bad as) other sun "rashes" which people get?
 

Blinkers

New member
Joined
Mar 21, 2022
Messages
5
Seems that Raynaud's is pretty common with FM, and many auto-immune diseases. Matter of fact, FM mimics a lot of auto-immune diseases, doesn't it.
Trying to see a podiatrist but seems that Kaiser is going to make me fight for it.
The solar purpura is pretty alarming looking as they can be huge purple & red patches which are the result of blood vessels breaking even without any injury whatsoever.
Thanks for responding. I really appreciate it!
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,944
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
FM mimics a lot of auto-immune diseases, doesn't it.
Yup - as we're all poking in the dark a bit, it's impossible to distinguish everything.
I wouldn't've thought that I'd find a kind of explanation for my oversensitivities and immune seeming symptoms so soon.
The jabs triggering 25 new symptoms, of which even those similar to fibro were different, revealed what can be called MCAS.
And MCAS is not an autoimmune disease, it's an overreaction = so disease of the immune system.
The difference wasn't that clear to me before, to make it clearer I'm calling the latter allo-immune (altho that's again something else...)
 

Blinkers

New member
Joined
Mar 21, 2022
Messages
5
I guess what I have the most trouble with is my lack of faith in Kaiser. It's not so much the doctors as it is the herd-like quality in such a system. This is why I struggle with their diagnosis. I do think I have fm but I also believe there's something else going on. If they don't see it on bloodwork or in the urine, it doesn't exist. When I did some research into autoimmune diseases like rheumatoid and lupus (reputable sites such as The Mayo Clinic), it turns out that many people aren't diagnosed for years as their lab tests come back normal. Also true with gout. You can have normal uric acid levels yet still have gout. Yet the doctors at Kaiser either don't know this or aren't allowed to investigate any further. I think it's the latter most of the time. I think it's almost hysterical (if it weren't so serious) that a doctor I have NEVER met, who clearly had not read my chart, talked to me on the phone for 5 minutes then diagnosed me with gout AND put in a prescription for gout medication. If I hadn't questioned her diagnosis, I'd be taking gout medication and joining a Gout Group. The worst part is, who knows? Maybe she's right. I don't know because the doctors refuse to do any testing aside from blood and urine (the least expensive of the tests). There is a joint fluid test they can do to determine gout, but that's not been offered. As far as they're concerned, aside from the swelling in my ankle, all they have is my word. Unfortunately, since fm doesn't have any particular lab tests to prove it exists, those symptoms that stump the doctors who aren't allowed to delve further into other possibilities, put us in the fm category.
I'm going to look up MCAS. Thank you!
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,944
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Be interested to hear if MCAS rings a bell for you! Mind you - pretty complicated... or rather the question is how far it gets you... 🧐
If they don't see it on bloodwork or in the urine, it doesn't exist. When I did some research into autoimmune diseases like rheumatoid and lupus (reputable sites such as The Mayo Clinic), it turns out that many people aren't diagnosed for years as their lab tests come back normal. ... the doctors refuse to do any testing aside from blood and urine (the least expensive of the tests). ... Unfortunately, since fm doesn't have any particular lab tests to prove it exists, those symptoms that stump the doctors who aren't allowed to delve further into other possibilities, put us in the fm category.
To bid for some understanding of this, for our own good/sanity:
Many of our symptoms are so hard to attribute that it's always a matter for docs, insurances and ourselves to weigh up cost and effort versus results. A centre for rare diseases suspected Sjögren's & Hashimoto behind my fibro. Both could be excluded, so the expensive visit led to nothing. That said, all my (50) docs, altho hardly helping, hinted at bits of a puzzle. It's also about their knowledge, but again that's a question of resources: If docs were paid to educate themselves more, they'd know more. If researchers were paid more, they could research better. (But do we want to pay for 8.000 studies per month on fibro instead of 800?) And behind it all it's the question of the politics of health insurance: "What is health worth?" And the other side of the coin is: What is health worth to ourselves, how much are we patients prepared to do for our health, before we get ill and when we are ill. Us as the body of people being insured and me personally: do I expect just to just pop a pill or 10 or do I do 5 or more hours of exercise, physio, change diets, analyze and research my symptoms myself and pain management every day.
Back to "the system" - it does praps seem unfair if someone prepared to do a lot for their health is lumped together with those who aren't. (Altho the various kinds of "justice" is a very complicated subject...)
But praps it can help to use extra motivation to find other workarounds within or around the system - like you are doing, and accept I'm part of the system, and there are a lot of reasons for it being the way it is.
 
Status
Not open for further replies.
Top