Hello Everyone!

jaksoja

New member
Joined
Feb 21, 2024
Messages
8
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
MA
In January I walked into my PCP office and said, "If this is what getting old feels like, I don't want to do it". I just turned 65. I used to go to the gym 3-4x/week. I practiced Yoga and Zumba and took much pride in my fitness. Then starting last summer but more so in the fall, I couldn't recover from routine exercise. I haven't been to the gym over a month. Hydration, electrolytes, protein, rest, ibuprofen, the usual didn't work. I've even had to give up my daily stretching in favor of sleep.

I've given up caffeine, artificial sugars, given up processed food, no alcohol. I buy mostly organic foods now.

I've newly added Vitamin C and D, Magnesium, Turmeric root and Zinc. I've taken a Multi Vitamin, Glucosamine/Chondrotin and Cymbalta and Trintellix for years.

Hot showers, heating pad and sleep are the only things that seems to help. When I can, I take a 15" to 20" walk. A slow, careful walk. I meditate for 30" daily trying to practice mindfulness and positivity.

I've tried Ibuprofen, ASA, Acetomin, Weed to no avail. I did have an integrative massage which left me improved greatly. For a few days felt what on might call "normal or regular" upon waking.

The closest Rheum appointment isn't for another 6 weeks. It left me feeling in despair. I had wanted to go back to work part time (I was downsized last year).

Everyones journey is different. Thank you for letting me share mine. While I have not been officially diagnosed; I know my body well. I spent over 30 years in pharmaceuticals. I'm not eager to take most of the drugs used for Fibro but, I could be so much worse. Thank-you for letting me share.
 
Greetings, @jaksoja , and welcome to the forum. You are most welcome to come here and talk about what is going on with you, ask any questions you may have, and to tell us your story. Even just to vent if you want or need to..........it's all OK and we are here to help and support each other.

It sounds to me as if you pretty much know what you are doing with taking care of yourself. The one thing I would suggest is that you try an elimination diet if you can. Even eating all healthy and organic foods, which is definitely excellent, might still include something that triggers your pain or makes things worse for you, so if you try cutting out certain foods or food groups to see if that improves anything you might discover something. Just a thought.

I also highly recommend getting whatever kind and degree of exercise you can daily, and it sounds as if you are fully knowledgeable enough about your body to be doing this and to know what that can or should be and how it may change day to day. It's a challenge that people who have not faced this have no concept of, but we here understand and get it.

It is important to go ahead and pursue a diagnosis simply because doing so includes being tested for all of the many other syndromes and disorders that have symptoms very similar to fibromyalgia, and you want to be sure to eliminate those in case you have something else instead or in addition to fibro.

There are many good people here on this forum and it is a safe place to come. I hope that it will be helpful to you in some way.
 
Thanks so much for your reply. I was very upset this morning because I was referred to a Rheum. When I made the appointment today I found I can't be seen until April 9. Plus they have no cancellation list.
I am so glad this forum exists. Bless us all on our journey to wellness.
 
The long waits to see specialists are very frustrating, to be sure. It seems from what people say on this forum that it is the same everywhere, in every country. Try not to allow it to affect you too much, because stress will only make you feel worse. Remind yourself that the time will probably pass more quickly than you think, and in the meantime take good care of yourself.
 
Hi jaksoja welcome to forum
☕🍫🌺, personally think you're doing really well (you know what your body needs and what it could do without, and what doesn't and dies work for you) I don't like really like taking the medications (the side effects) but I don't have much choice (that or constant pain) the foods you've taken out are some that make my fibro worse too, it's not long till march (so a few weeks till rhumie) I don't know if it'll make a difference to you knowing if it's fibro or not (for me it was nice to know exactly what was going on) but it's usuallly those that diagnose it, was it the dr who suspected fibro (or did you know about fibro from being in pharmaceuticals?) Also did you find the dietary changes to be making any difference to you? 🤗💝🤗
 
When I made the appointment today I found I can't be seen until April 9. Plus they have no cancellation list.
It seems from what people say on this forum that it is the same everywhere, in every country.
Yep, here in my part of Germany the first appt. for a rheum is 5-6 months, also no cancellation list, so 7 weeks compares really well and it's probably not worth it to look for loopholes.

Loophole: Our state insurances have a system where they offer slots further away. I used that not knowing that altho I'm semi-private. Realizing that I phoned and they still took me. So depending on our services it may be possible to shop around further away. (At the time I was able to travel the 200km, now hardly 10, due to my added conditions.)

But what I also often do in such cases is try to get referrals to other relevant specialities, if necessary out of pocket. Like my first rheum denied fibro, sent me to an MRI, and neurology, who sent me to psychiatry and sleeb lab, and endocrinology, so I could go to my 2nd rheum armed with the negative results and she could then diagnose fibro straight away.
When I was thru with that lot I got seemingly smaller things checked, like uro, nephro & allergy. If it hadn't been enough already I might have got those things checked first too.
Early on I also got an appt. at a centre for rare diseases who could take me on 6-7 months later, so good I did that early.

Fibro isn't a diagnosis by exclusion anymore, but each symptom and other diagnoses still need to be sorted.
 
Fibro isn't a diagnosis by exclusion anymore,
This depends on where you live and how the specific doctor(s) that you are seeing are determining the diagnosis. It is not accurate to say that fibromyalgia is no longer a diagnosis by exclusion, because many doctors do diagnose it in that way, and in fact a diagnosis of fibromyalgia really cannot reliably be determined without first excluding or examining all of the other possibilities.
 
This depends on where you live and how the specific doctor(s) that you are seeing are determining the diagnosis.
It is not accurate to say that fibromyalgia is no longer a diagnosis by exclusion, because many doctors do diagnose it in that way, and in fact a diagnosis of fibromyalgia really cannot reliably be determined without first excluding or examining all of the other possibilities.
To not meander off, I was saying it's important to get other things excluded, and suggesting the order in which that is done is secondary, so it might be possible to make up for lost time by looking to other specialities.

I've taken an explanation how the fibro criteria since 2010 do not see fibro as a diagnosis of exclusion any more see here.
 
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@JayCS , it might be helpful for you to remember that it is all right for others to have different views, opinions, ways of describing things, be speaking in practical rather than philosophical terms, etc., or be speaking from different perspectives. Please don't try so hard to make sure that you have proven you are "right" and someone else is "Wrong". Thank you.

And let's not veer too far off the original topic of this thread, which is to welcome a new member.
 
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Short and sweet 😁
 
Thanks so much for your encouragement. I think I have had some improvement with the supplements I’m taking. Dietary changes, who knows. As long as I feel positive about the changes I’m happy. I’m trying to be a little more active. I have to find a way to live with this new nasty situation. Bless you and everyone on this forum. To GOOD days!
 
Hi @jaksoja,

I am very new here too but agree with trying to become more active. Before I was diagnosed I had no idea what to do with myself so because of my pain and stiffness I almost stopped moving much at all. I was trying to safeguard making things worse. Big mistake.

But once I slowly began some more movement and then exercise I know I really helps me - helps me emotionally too, knowing I am doing something positive for myself.

I increase slowly,because my big fault is exercising, or trying to do a bit of garden tidying or housework, and because it feels good I keep going... And then the fatigue hits me the next day. I am learning the balance of moving as much as I can but stopping before I do too much. Mostly works.

being on here helps me. I totally agree :

here's to the GOOD days. Take care
 
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