Diagnosed in January 2020

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Jennfrashlee201

New member
Joined
Mar 29, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
MI
Hi everyone,

This is my first time ever joining a forum or using one.
I am 35, married, two kids and two dogs. I was diagnosed with Fibromyalgia at the end of January 2020. I went through blood work, x-rays, etc.
The best way to describe my symptoms is it feels like my body is destroying itself. I have pain in my neck, hands, wrists, back, top of my hips, and my knees. I have pain and tingling in my legs that feels like bugs are crawling under my skin. I suffer from debilitating migraine headaches. I have a rash all over both my cheeks, my chin and my forehead. And I cry more than I smile anymore.
The most frustrating thing is I don’t feel like many people believe me. I can’t put down a diagnostic test and say “see, here it is”. My own mom doesn’t seem to believe me and that makes me so sad.
I am hoping to find people who understand me here, suggestions on what others have found to work, and sometimes have a place to just vent.
Ever since everyone’s world got turned upside down by COVID-19, I feel like I have personally been in a constant flare.
I look forward to talking to you all.
 

Mirador

Member
Joined
Nov 27, 2019
Messages
20
Reason
DX FIBRO
Diagnosis
01/2017
Country
US
State
MI
Sounds like you've been clobbered with a lot of miserable symptoms. Are you seeing a rheumatologist or another kind of doctor? Has your doctor offered any mods for your debilitating pain? Have they absolutely ruled out lupus? Asking because of the facial rash. The crawly sensation (formication) can happen with fibromyalgia but could also have other causes. With your history of migraines complicating things, I think a great doctor will be your best ally. Hopefully you already have one, but if you're not feeling confident, keep looking.

As for believing you about your symptoms - I believe you, and so does everybody you'll meet on this forum. The symptoms of FM are varied and can be weird and we don't all get the same combination of them. Being stressed by the current pandemic isn't doing anybody any good. I find comfort in the knowledge that we're all in it together. I feel much less alone in whatever struggles I have.

Hope things will ease up for you very soon.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,177
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
You will find people here who have had all the symptoms you describe and more. It is a very common thing for people with fibro not to be believed by their friends, family, colleagues and others. It's something we just have to deal with, because until fibro is better known, that is how it will be. Even if you had a signed certificate from doctors, many people would not believe you. I have a theory as to why that is, but you just have to learn to cope with it in a way that works for you.

As for it being The Year Of The Virus, (at least, we can still hope it's only going to be a year) indeed probably everyone on the planet is by now affected by the chaos that is going on, and it is a hard time for all of us. For people with Fibro and other such disorders it is even harder, because stress greatly exacerbates our symptoms, and there's pretty much no way to avoid feeling stress these days no matter who or where you are. The human race is stressed out these days! I know my pain level has risen a great deal since all this began. All we can do is hang in there and take the best care we can of each other and ourselves. If we can help each other here, that's what this forum is for.
 

sjbrown

Distinguished member
Joined
Jan 27, 2020
Messages
168
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
ME
Hi everyone,

This is my first time ever joining a forum or using one.
I am 35, married, two kids and two dogs. I was diagnosed with Fibromyalgia at the end of January 2020. I went through blood work, x-rays, etc.
The best way to describe my symptoms is it feels like my body is destroying itself. I have pain in my neck, hands, wrists, back, top of my hips, and my knees. I have pain and tingling in my legs that feels like bugs are crawling under my skin. I suffer from debilitating migraine headaches. I have a rash all over both my cheeks, my chin and my forehead. And I cry more than I smile anymore.
The most frustrating thing is I don’t feel like many people believe me. I can’t put down a diagnostic test and say “see, here it is”. My own mom doesn’t seem to believe me and that makes me so sad.
I am hoping to find people who understand me here, suggestions on what others have found to work, and sometimes have a place to just vent.
Ever since everyone’s world got turned upside down by COVID-19, I feel like I have personally been in a constant flare.
I look forward to talking to you all.
You will definitely find support here. WE are all in the same boat and finding ways to cope and comfort each other and ourselves.
 

Jennfrashlee201

New member
Joined
Mar 29, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
MI
Sounds like you've been clobbered with a lot of miserable symptoms. Are you seeing a rheumatologist or another kind of doctor? Has your doctor offered any mods for your debilitating pain? Have they absolutely ruled out lupus? Asking because of the facial rash. The crawly sensation (formication) can happen with fibromyalgia but could also have other causes. With your history of migraines complicating things, I think a great doctor will be your best ally. Hopefully you already have one, but if you're not feeling confident, keep looking.

As for believing you about your symptoms - I believe you, and so does everybody you'll meet on this forum. The symptoms of FM are varied and can be weird and we don't all get the same combination of them. Being stressed by the current pandemic isn't doing anybody any good. I find comfort in the knowledge that we're all in it together. I feel much less alone in whatever struggles I have.

Hope things will ease up for you very soon.

Thank you so much. I started seeing a Rheumatologist at the end of January (he is the one who diagnosed me with Fibromyalgia). He prescribed me 30mg of Cymbalta, 1x/day. I've been on Norco 10mg since November, which my GP prescribed to me, because I went to him first in tears because I couldn't sleep and my pain was unbearable. At this point, the Cymbalta doesn't work at all, the Rheumatologist wanted me to stop taking it, but without it, I can't get out of bed. I'm supposed to have a virtual appointment with him tomorrow morning. I don't think he even believes that I'm in as much pain as I tell him I am. I don't even know if a Rheumatologist is the right doctor to see for this.

I had more bloodwork done when I was at the Rheumatologist to check for Lupus, etc. but all my levels came back normal according to the results I got. My understanding is that happens quite a bit - the lab work at the time comes back normal.

I am hoping tomorrow yields something new I can try to give me even a little bit of relief. It's very nice to be on a forum where I can talk to others who have been/currently going through the same thing. You feel much less alone.
 

Jennfrashlee201

New member
Joined
Mar 29, 2020
Messages
4
Reason
DX FIBRO
Diagnosis
01/2020
Country
US
State
MI
You will find people here who have had all the symptoms you describe and more. It is a very common thing for people with fibro not to be believed by their friends, family, colleagues and others. It's something we just have to deal with, because until fibro is better known, that is how it will be. Even if you had a signed certificate from doctors, many people would not believe you. I have a theory as to why that is, but you just have to learn to cope with it in a way that works for you.

As for it being The Year Of The Virus, (at least, we can still hope it's only going to be a year) indeed probably everyone on the planet is by now affected by the chaos that is going on, and it is a hard time for all of us. For people with Fibro and other such disorders it is even harder, because stress greatly exacerbates our symptoms, and there's pretty much no way to avoid feeling stress these days no matter who or where you are. The human race is stressed out these days! I know my pain level has risen a great deal since all this began. All we can do is hang in there and take the best care we can of each other and ourselves. If we can help each other here, that's what this forum is for.

Thank you so much. I already feel better having a place to come to discuss everything that's going on. I appreciate you!
 

rhoda1972

Member
Joined
Sep 21, 2020
Messages
27
Reason
DX FIBRO
Diagnosis
09/2020
Country
CA
State
BC
I was prescribed 30mg of cymbalta as well and was just diagnosed. I am hesitant to start meds. Is it helping?
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
402
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
diagnosed with Fibromyalgia at the end of January 2020...
The best way to describe my symptoms is it feels like my body is destroying itself. ...
I have pain in my neck, hands, wrists, back, top of my hips, and my knees. ...
I have pain and tingling in my legs that feels like bugs are crawling under my skin....
rash all over both my cheeks, my chin and my forehead. ...
And I cry more than I smile anymore....
The most frustrating thing is I don’t feel like many people believe me...
Ever since everyone’s world got turned upside down by COVID-19, I feel like I have personally been in a constant flare...
Hi Jenn, I was dxed a 2 weeks later, Feb20, so I am in the same wake of CoV as you, my constant flare having started Oct19, but properly Jan20, having to stop working since then.
My take at trying to comfort you in your suffering is to offer alternate ways of seeing things, perhaps counselling could deepen that for you...:
My feeling living here was more one of comfort, that the whole world was getting out of synchronicity anyway, same as my whole body, somehow fitting. CoV helped me, cos of work changing, making my being off not as conspicuous, and sometimes getting appointments more easily (sometimes not), because people were scared of going to the docs (and I always just wore my surgical masks).
I do know this feeling of my body destroying itself, feverish-feelings etc. seeming auto-immune, my quick exhaustibility feeling like my body is full braking, thwarting itself, or has been in an accident, is a lead suit. So I was thinking of it being auto-immune (too), which is a doc-suspicion now, but won't help me that much. Now I've got most of the various pains down, I am reassured that it's better to see the pains as lots of small warning signs turning into one big one, saying: stop it, even my body saying: stop hurting me, hold your horses, go down into first gear. (Praps like nature is trying to tell us humans too.)
Helpful to me was dividing up each symptom into its parts: Your pain and your tingling could have different reasons, different ways of getting it down. The pain could be overexertion, the tingling could be nerves (doc) or in my case skin dryness, meaning less water contact.
If the rashes aren't lupus/autoimmune, it may be skin (atopical) and/or meds. I got severe rashes on my legs and 'burns' all over my body from COX2-inhibitors.
I do have and want to keep times where I am tired of it all, sad and depressed, usually when a new dx comes into play, and thinking, well 25 is enough, why does it have to be 30 diagnoses? (And why of all things cardiovascular?) And sometimes the pain (esp. in cold wind) gets so bad I have to cry (and I'm a guy ;-)). I think it's good not to fog this part over. But also to find resources for happiness and inner energy to get self-care up. I remember looking for comedy stuff that makes me laugh and being exasperated at not finding anything, not even things that used to make me roar. What helps me most laugh most is the antics which often come about playing table-tennis, even if it takes a lot of breaks and ache. But apart from that I'd use counselling to help coping, have done, just to be sure.
I was/am lucky in that my wife sees my pain better than I do, because she sees my stiffness (which doesn't hurt much tho, I keep trying to tell her) and sees me cry inside. It was her that sent me to 2 rheums too. But the experience is very strange when people who know me or don't say 'Oh, you look good today' or 'much better now', not realising that they can't see me a lot of the day, cos I have to be inside lying down.
It's again - out of synchronicity. But it's not just others I think, we ourselves sometimes don't believe it ourselves if we have a moment peace. I found a fibro-pic saying "my symptoms *get progressively worse*, me: oh thank god, I though I was faking this the whole time." Also the invisibility is our daily/hourly/minutely chore/job, finding the invisibly moving sweet spots for all our activities. This invisibility does feel a bit like an invisible enemy within, like you say "body destroying itself", but really it isn't the body, it is something unknown in the body. Again, our job is to uncover the invisibility as much as possible, listen to the undertones much more subtly and caring than ever before. I wouldn't prefer to have no legs or be dead, just so no-one can say there isn't anything. It being invisible and realizing that at least some of it is manageable gives me tons of hope. And if people don't accept me saying that I am in (sometimes excruciating) pain, and I'm not imagining that, it's not my job to convince them, apart from explaining a bit, it's my job to accept it and myself first. And then looking for people (incl. docs) who do believe me, who take it seriously.
Hope there's some ideas here for someone...
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
402
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Meds: I'd be wary about them, but they can be a life-saver till you get other things better.
Rheums: They should be the most suitable, but aren't necessarily, most of mine at least (2, plus 4 in the rheum. clinic). Give them a chance, but keep changing them if you're not satisfied and trying other docs/therapists too, same there, to check every single symptom.
 
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