Hi! Just got fibromyalgia dx today- stressed and sad 😥

Status
Not open for further replies.

Jennifer V

Member
Joined
Mar 31, 2022
Messages
12
Hello all! I've been suffering from increasing joint pain over the past six months and have been to a rheumatologist multiple times for exams, for blood work and X-rays.

Today he said he thinks I have fibromyalgia, because all blood work (extensive!) didn't show any signs of RA or lupus or other autoimmune/inflammation, and the minor osteoarthritis shown on the X-rays is not consistent with the pain I'm experiencing.

Pretty much every joint hurts now - fingers, toes, hips, wrists, elbows, shoulders, even jaw. It started out mild and just in a few joints, and has gotten worse quickly, especially in the past few weeks. It is definitely affecting what I can do.

Things I've tried: Meloxicam (rx from rheumatologist) and Tylenol daily - doesn't stop the progression or help much; ice packs, heating pads, glucosamine/chondroitin daily; vitamin B daily; fish oil daily.

My rheumatologist also started me on pool/swim therapy a month ago, before he gave me the official diagnosis. I go to a pt place with a heated pool and do gentle exercises. This feels good and relaxing but not sure it's helping yet... it's only been a few weeks of therapy.

I'm sad, depressed and anxious. Feel like I'm in a pit of despair.

Can you please offer me your suggestions on diet, supplements, medications and things that work on your joint pain?

Does anyone else present with mostly joint pain? I'm not sure this DX is even correct. I'm still wonder if it's actually some kind of arthritis.

I have a 15 year old and I'm terrified I won't be able to do things with her if this gets worse. I'm lucky that I only work part time (writer) as my husband is the major earner, but I'm scared of my potential going away. What if we needed me to work full time and I can't? Ugh.

Any positive stories about things that help you would be greatly appreciated! I hope you're all doing well and staying strong. 💗

Jennifer
 

Jennifer V

Member
Joined
Mar 31, 2022
Messages
12
I should add that I'm female, 50 years old, and live in Arizona. I'm significantly overweight and know it's critical to lose weight if possible. Again, any suggestions on things that help you reduce pain in joints would be greatly appreciated! Thanks in advance!

Jennifer
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,956
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi Jennifer and welcome in here! 👋

Most importantly "joints" might clarify a lot for you. I had similar doubts to you for quite a time and the docs, forums etc. didn't help.
They were hurting like yours and very stiff. This stiffness had been the reason for my wife to push me to a rheum, because it was visible.
The first didn't find anything and sent me on to neuro & endocrine, who found nil. Scans like in your case found only minor OA.

But at the beginning of my path of identifying & analyzing all triggers and symptoms, I decided on a hunch to examine each joint myself.
What I found was that the joints actually move very supply, e.g. I can swing them, even when they feel very paining and stiff.
However when I examine the area around the joints I can find many painful points above & below, obviously tendon beginning points.
That fits to one of the alternate diagnoses of my 2nd rheum, polyinsertionstendomyopathy = 'pains at the insertion points of muscle tendons'. She said she prefers that term, because it is more exact than fibromyalgia. What that/she neglects is all the other major symptoms, i.e. overall muscular Ache, insomnia, a feverish feeling, exhaustibility (my main form of 'fatigue') etc.

So, what d'ye think: Joints or tendons?
Even if that's your main symptom and you're tentative about calling it fibro yourself: Maybe you're lucky that you can now nip the rest in the bud. Whatever, the best starting point for all of us, fibro or similar is always sunkacola's Big Advice Post -> here (top of "General" forum).

For this seeming joint pain my main recommendation is physical: exercise starting short (if need be ten seconds) and gentle, but regular, and increasing in baby steps, mainly stretching, but also self-applied acupressure (e.g. books or youtube videos for each 'joint') or even better for starters by an acupressurist. Various other understanding, listening, gentle physios may help, like osteopaths, but we usually have to shop around a bit. There are lots of suitable techniques like trigger points or gentler Jones technique, myofascial release etc. Since my acupressurist helped me get all my local pains down (after 2-3 osteopaths did that only a bit) I didn't have to look further, but I would have. At the moment I'm trying acupuncture for the third time, this time fairly successfully for exhaustion & heaviness, and would think she (Chinese) might have helped with my local pains too, as opposed to the 3 acupuncturists before.
Back to self-applied: Thirdly I use a massage gadget ('gun') carefully and successfully on the tendon insertion points and I actually try it on most kinds of musculoskeletal pain and even others, like belly ache. If it's not comfy or I'm wary, I stop.

The main relevant general 'elimination' diets to try would be stopping meat, dairy, gluten, either separately or together, 1-3 months. Unlikely, but possible, that they might help.
Generally a healthy diet like the "Mediterranean" is of course always good for everything, i.e. only unprocessed food, complex carbs and unsaturated fats, instead of any processed foods, simple carbs and saturated fats.... It is also recommended in studies for fibro for that reason.

I use loads of supps (25-35), but for many other reasons.
I think if at all the inflammatory ones (presupposing that it's an inflammation of the tendons or similar that's causing the pain.
Foodwise I don't tolerate anti-inflammatory spices (ginger, turmeric, pepper etc.), but eat quinoa instead of rice/potatoes.
The most commonly used of my anti-inflammatory supps are ALC, D3(+K2), gingko, Ω3, CoQ10, zinc, ALA(-R),
second in line: PQQ, quercetin, resveratrol, rhodiola, SAM-e, selenium,
And third in line: EGCg, luteolin, silymarin, ellagic acid, honokiol/magnolia bark, parthenolids/feverfew, PEA, serrapeptase.
Low dose med LDN also may be anti-inflammatory.

Your emotional state may be one that's grieving about your loss for a while, which is perfectly understandable and good to do!
At the same time we need to look forward to making the very best of a new life, praps slower,
but praps gently happier, more consciously thankful for the small things in life, more mindful, more relaxed, more quality time.
If you don't manage it or need help, counselling, books etc. using CBT or ACT ('radical acceptance') or pain management (e.g. books by Kabat-Zinn, Peter A. Levine, or a good pain clinic if you need more support) may be necessary and helpful.
I've written a detailed starting point for grieving and self-motivating -> here, if you want to delve a bit into a possible path ahead.
 
Last edited:

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,319
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
@Jennifer V , welcome to the forum.

The first thing I want to say is...Take heart! This is not a death sentence, and there is no need whatever to feel despair! Many of us here have found the things that really help us to manage fibromyalgia, and you will too.

Your potential will not go away. You may have to find different ways of achieving the goals you have, or different ways of going about it. But people are adaptable and you can find your path to a full life.

For practical and specific suggestions and many tips for managing fibromyalgia, I recommend that you start with my post on this subject:

Remember that this is not the end of the world, and that you can learn to live with this and still have a full life. Maybe it won't be the life you thought you would have or the one you wanted or even used to have. But change is a part of life and as discouraging as it is at first (believe me, I have been there) in time and with some effort on your part things can become much better.

The main thing is that you cannot just believe someone who says "do this", because everyone's body and experience is so different. You have to try things for yourself to find out what works for you. That is why I list so many things to try in my post.....you have to experiment, find what works,, and then be ready to roll with it if it stops working, and try something else.

It is very overwhelming at first, and if you need support to handle that we are here for you. And, the more positive action you take to work with your body and do the things that might help, the less despair you will feel. Despair comes from feeling powerless. Once you decide to take hold and do what you need to do, and take action, despair goes away and then you will have that energy to put to a much more constructive use.
Information is power, and there is a lot of information on this site, and people ready to help.
 

Jennifer V

Member
Joined
Mar 31, 2022
Messages
12
Thank you so much for your encouraging words! I will read your post to get some ideas. I appreciate you and the other people in this forum!
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,319
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
We appreciate you being here too, Jennifer. It takes all of us working together to help ourselves and others.
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,319
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Double doses of magnesium citrate.
Please remember that everyone is different. Taking magnesium citrate has helped many people, but it also has not helped many people. So when you give or read advice like this it is good to keep in mind that all advice constitutes is things you could try if you want to during your exploration and experimenting to see what works for you. :D
 

Gianna

New member
Joined
Apr 5, 2022
Messages
7
The first thing , calm down deep breathing. Acceptance and acceptance. Get all the information from people that is going thru it. They are your best supported. We understand each other and we understand our fibro language. Your journey is long and you will learn what works for you better. Not all medications works for us the same. In 16 years I have try everything, doctors prescribe and other suggested. I have not had one day in the last 16 that I don’t hurt or I’m tired, upset at my self for having to deal with this. I do find comfort in acceptance and do my best to keep going. Going to church and being close to Jesus, his writings, meditations and doing my best always. Pushing myself so this condition don’t take me. I choose to control
 
Status
Not open for further replies.
Top