Recently diagnosed

[MountainGirl]

Hello everyone
I have been reading through many posts, and want to say thank you for being brave and putting your experiences out there for others like me to read.
My diagnosis came from a physiatrist and seconded by my general practitioner. I have been referred to a rheumatologist, but have not seen them yet. I didn't believe the physiatrist at the time. I was referred for nerve conduction tests because my hands were going numb while I was working. He did diagnose carpal tunnel syndrome, but that didn't account for all the symptoms. As the appointment progressed and he questioned me on a number of other things, he did test for the tender points in addition to all the other questions he asked.
I didn't put all my other symptoms together. Rather, I compartmentalized them... my hands hurt because I work with my hands, my feet hurt because I have hard flooring and no carpets/my shoes aren't supportive enough, I have had headaches and migraines for the last 15 years and have osteoarthritis in my neck and attributed my lower back pain to the same.
My GP was patient with me when I finally went to see him. It took me almost 2 months to finally get to the point where I was ready to discuss the appointment with the physiatrist because I was so unhappy and felt that he wasn't addressing the concerns I had. It turns out he did, but I just didn't see it because I was so focused on the pain while I was working that I didn't put it all together.
Reading the posts on this forum, along with credible sites for fibromyalgia, helped me to piece it all together. I didn't realize that at 49, others don't experience the same kind of pain, symptoms, and tiredness that I do. So, thank you all for being so open with your experiences. You have helped someone new to the fibro world.

 

[cookiebaker]

Hello, and welcome!
I, too, for years compartmentalized all the various issues/aches/pains, fatigue, not sleeping well, in pretty much the same way you describe.. lol
i drove truck (long haul semi) for nearly 20 yrs, and as a short female, let me tell ya.. that is hard on a body.
Never considered fibromyalgia until i met a gal at school (went back to school at 48) who has it, and we started talking about the various symptoms... then it was like, wow... maybe this is what is going on...
I have finally been given an actual diagnoses after nearly 10 yrs of suspecting it, and actually suffering with it for much longer..
I have been tested for pretty much every other thing that it could have been - RA, Lupus, Lyme, etc... I honestly thought that I had a thyroid problem for quite a while (still not convinced there isn't one, tbh),
I got referred to the Physical Medicine department at my clinic... found a Great Doc! He is the one that finally gave the Fibro diagnosis - along with peripheral neuropathy, both cervical and lumbar spondylosis, etc....

 

[JayCS]

Hi, MountainGirl, and welcome from me too!

My diagnosis came from a physiatrist

I assume that is a type of doctor, not a physical therapist, its other meaning? Interesting - specifically Canadian, I assume? . Here good physical therapists might suggest the dx.

he did test for the tender points

Yeah, in the UK and US researchers have ditched those as unreliable, but that doesn't prevent docs there or elsewhere still using them, which may be OK, if it's additional to the "actual" more recent criteria.

I didn't put all my other symptoms together. Rather, I compartmentalized them..

Compartmentalized - I like the word , I'll try to use that one. Essentially I keep trying to "synthesize" symptoms (as in "group them together") to find a root cause (ATP/mitochondria I sometimes think) or at least part root causes ('sicca syndrome'). But that never helps and will probably only be part of the story. So to really get to grips with the symptoms I've been much more successful with describing, tracking & analyzing each (occasionally in groups) individually, so compartmentalizing . But of course the grouping gives orientation, where to look for managing and treatment ideas. Seen @sunkacola's Big Advice Post?

I didn't realize that at 49, others don't experience the same kind of pain, symptoms, and tiredness

Yep. I did and actually secretly still assume all people have pain all the time, despite my wife looking at me as if I were an alien and laughing when I ask "don't you"
Doesn't help when well-meaning friends occasionally threw at me "ah, maybe you're just getting older". And I felt press(ur)ed to argue back if that includes sick leave and having to stop work and try to describe my continual "flu" inside as opposed to my outside....

 

[MountainGirl]

Hi!
Yes, physiatry is physical medicine, a specialty that often works in rehab medicine, but I also don't fully know what they do. I wasn't aware of what the questioning was leading to, until he asked if he could touch those points. I suspect he was looking for additional details to add into his report back to my GP, but honestly, I felt rather overwhelmed during the appointment with all the questions and feel like I shut down before it was over.
I will wait patiently for the rheumatologist referral. I have no idea how long it will take. It seems everything is taking an exceptionally long time these days. In the meantime, perhaps I will be able to be a little more patient with myself when experiencing symptoms instead of pushing myself to do all the things on my agenda. I have, however, realized that I cannot continue in my current career and have enrolled in a new masters program so I can work with my brain instead of my hands. Knowing I have an exit strategy is somewhat comforting.

 

[JayCS]

Yes, physiatry is physical medicine, a specialty that often works in rehab medicine, but I also don't fully know what

Ah yes, rehab medicine here is often linked to orthopedists - however these had no understanding of fibro.

I felt rather overwhelmed during the appointment with all the questions and feel like I shut down before it was over.

Yep, I can imagine, esp. if we don't know fibro, know what they're looking for, as most of us don't.

I will wait patiently for the rheumatologist referral. I have no idea how long it will take.

Not sure what you're expecting from that... Confirmation of the diagnosis - help for treatment?
Often they don't treat. And if they do it's usually exclusively the med route, not pain management, coping, supps, diets, symptom tracking / trigger hunting etc... So: Don't expect too much.
For more confirmation you could do the online test on our main site based on the criteria attached.

In the meantime, perhaps I will be able to be a little more patient with myself when experiencing symptoms instead of pushing myself to do all the things on my agenda. I have, however, realized that I cannot continue in my current career and have enrolled in a new masters program so I can work with my brain instead of my hands. Knowing I have an exit strategy is somewhat comforting.

Two great starting points. "a little more" will probably not be enough though as I bet you realize...
Sounds like you're doing a great job already adapting well to your situation and keeping something going at the same time. As I usually can't move around much any more for fatigue, I've had to reduce socializing as well as work to low-stress mailing, sometimes phoning or video meetings, but keep my brain active in many ways, like here and to find still new treatments, although I've done 100s, and actually do more than 80 "all the time" I once estimated, if I count each mental strategy, PT form, diet, analysis & supplement.

 

[MountainGirl]

I'm not really sure what to expect from the rheumatologist. Perhaps exclusion of other conditions...

 

[JayCS]

I'm not really sure what to expect from the rheumatologist. Perhaps exclusion of other conditions...

Ah, true, yes of course!
That's the main reason it's poor them that've been lumped and plagued with us difficult lot....

I actually eventually got my many symptoms checked with "every" single specialist there is ("25"),
bar pulmonologist and immunologist, and many of them doubled and more (so tallying 50).
(Recently allergists again, praps an immunologist if I find one competent for jabs/MCAS).

 

[MountainGirl]

I'm curious as to their assessment as I have had osteoarthritis diagnosed over ten years ago also. Perhaps I will learn more after the appointment regarding that also.

 

[cookiebaker]

osteoarthritis is pretty common - it is a "wear and tear" type of arthritis, unlike rheumatoid arthritis, which is autoimmune related and inflammatory. the fun bit is when OA tries to mimic RA - my hands will get puffy and be quite painful at times, just like someone who has RA, but RA has been ruled completely out in my case - as has psoriatic arthritis (psoriasis runs in my family).

I am hopeful for you that you get a sympathetic/empathetic Rheumatologist.. some are, some arent. the one i saw was ok, but she did rule out other possible problems. I was sent to her because i did test positive for autoimmune (not real strong, but there). At this time there is no specific ruling as to what is causing my positive autoimmune response... i guess only time will tell.

@JayCS - the clinic i go to has around 80 specialties... I sincerely hope i dont need to see all of them!

@MountainGirl - just take things one day at a time.. dont push yourself too hard - that just causes things to feel worse. You might want to look up "Spoon Theory" as it is a pretty good analogy for us.. it was originally conceived of for explaining Lupus, but is very fitting for us Fibro folk as well.

 

[sweetkamie20]

Hi mountain girl

Very happy that you have an exit strategy! That’s great. Most of us need 1 and it takes some figuring out how to make the pieces come together. You’ve got a great head start.

I’m really new on this journey. At first I really wanted to figure out how to shortcut through the learning curve. I asked questions like, If I rest a little, does that mean I will be able to resume a normal life 95% of the day? Is there a medication that will suppress all of my symptoms?

The answer is: no, not like I wanted BUT I am doing much better following the advice to slow down, pace myself, don’t plan on doing things the way I used to. This advice cut me down a notch because I was still holding on to an unrealistic expectation of the future.

When I accepted the likelihood that the changes would be lifelong and more substantial than I wanted is when I started seeing solutions that really can work long term. The final product so far is that I don’t do as much in a day but I also am not nearly as miserable. I am getting used to not being an overachiever and I must admit it’s actually a great feeling to let that drive go and swap it for a gentle, encouraging drive which balances your spirit and body.

As a little boost to your train of thought I think it is super wise to be open to additional changes. I am celebrating the fact that you have an exit strategy

Welcome to the forum

 

[JayCS]

I am getting used to not being an overachiever and I must admit it’s actually a great feeling to let that drive go and swap it for a gentle, encouraging drive which balances your spirit and body.

So brilliant if we can manage to savour that,
"especially" when we've overachieved anyway...
"Especially" in the double sense that it's especially hard, but especially justified!
Inside I actually now do celebrate having "made it" - "well-earned (part) retirement"...
And my suffering is so well earning it 1000-fold that everything single thing I do is luxury for me & others.

 

[MountainGirl]

When I accepted the likelihood that the changes would be lifelong and more substantial than I wanted is when I started seeing solutions that really can work long term. The final product so far is that I don’t do as much in a day but I also am not nearly as miserable. I am getting used to not being an overachiever and I must admit it’s actually a great feeling to let that drive go and swap it for a gentle, encouraging drive which balances your spirit and body.

As a little boost to your train of thought I think it is super wise to be open to additional changes. I am celebrating the fact that you have an exit strategy

Welcome to the forum

Not being an overachiever is going to be difficult! I sit on the board of directors for two community organizations and co-chair a third. I am shutting down my small business since I am going back to school while I continue to work full time. Sigh. I'm not sure how I am going to pull this all off, but I will step down from the co-chair position to make room. I need to work because I am a single mom. There's just no way around that. I am, however, pleased that when my kids came home yesterday from being at their dad's for 3 weeks that he automatically offered to pick up the slack wherever needed. He's a good kid. Unfortunately, he will likely only be at home for the next year, then he's off to uni.. Sigh.

 

[MountainGirl]

But another question for everyone: is it common to wake up feeling like the beginnings of a cold is coming on? Like a raspy throat that doesn't turn into a cold?

 

[sweetkamie20]

Not being an overachiever is going to be difficult! I sit on the board of directors for two community organizations and co-chair a third. I am shutting down my small business since I am going back to school while I continue to work full time. Sigh. I'm not sure how I am going to pull this all off, but I will step down from the co-chair position to make room. I need to work because I am a single mom. There's just no way around that. I am, however, pleased that when my kids came home yesterday from being at their dad's for 3 weeks that he automatically offered to pick up the slack wherever needed. He's a good kid. Unfortunately, he will likely only be at home for the next year, then he's off to uni.. Sigh.

That is one great kid you raised Does he know where he’s heading for uni?

It’s great you’ve already identified some things to take a leave of absence from. I think if you do give yourself a break from all non-essential things for a bit it will make clear which time investments you truly want to make. Honestly, it wasn’t until I shut down the noise of my drive and guilt for not doing more that I got a real opportunity to get better.

If you’re up for sharing, I would love to know about the nature of the organizations you’ve participated in. I’ve mostly been involved in child advocacy through the Guardian ad Litem Program. I’m extremely fortunate to never need to work (so long as the economy doesn’t tank). We live on a thrifty budget though so I would welcome an opportunity to earn some money building a website or something. I’m still thinking through what other options there might be for me…

I do hope you let your kids help - kids do find it rewarding to help a parent! In fact, it can hurt their spirit if you don’t ask for help after they have offered

 

[sweetkamie20]

But another question for everyone: is it common to wake up feeling like the beginnings of a cold is coming on? Like a raspy throat that doesn't turn into a cold?

I can’t say I experience that. I wake up consistently with a sinus infection related to allergies- I think laying down and sleeping gives the allergens a chance to work overtime. Could your throat be related to allergies?