Is my chronic pain Fibromyalgia?

[RaeleneN]

Hello! I’m a 23F and I’ve been suffering with chronic pain mainly in my joints. A year ago, I started experiencing a dull pain in my ankles. Later on, I began feeling a burning pain in my knees and it would often swell -and become red. Around July/August, my pain became excruciating due to the hot weather. I began having an intense burning pain in my knees, ankles, elbows, fingers and lately, I’ve been having shoulder pains. I’ve seen a few doctors including a rheumatologist who initially said that I may have inflammatory arthritis. Two blood tests (ESR and CRP) showed moderate levels of inflammation. However, my rheumatologist said that I may be experiencing fibromyalgia due to my mother having fibromyalgia. However, the only symptoms I am experiencing are extreme joint pain with a burning sensation, flu-like symptoms and fatigue. My mother has fibromyalgia but she always says that her pain feels widespread whereas my pain feels like an intense burning that is radiating from each of my joints. I also feel like she suffers with a lot more symptoms relating to fibromyalgia than I am. Has anyone with fibromyalgia experienced pain that is solely in the joints? If not, what does widespread pain mean to those suffering from fibromyalgia? Also, does inflammation occur with fibromyalgia? Thank you in advance for responding!

 

[JayCS]

Hi RaeleneN, welcome here!
- you've also posted the same here, maybe a technical glitch - not sure if you can delete the 2nd post yourself (left bottom, next to "edit"), but I'll answer this first one, let's see where others answer...:
I think fibromyalgia is like the name says is more a pain of the muscles / fasciae / ligaments, altho join pain is possible and named on the symptom lists. Stiffness like I have all day will look like it's the joints too. In my experience however, it isn't really the joints themselves, it's the muscles somehow "shortening" and putting tension on the tendon insertions above and below the joints. If I check each joint individually I realize this, including finger joints etc.
The burning sensation would be more nerves in fibromyalgia, so as you say the burning is radiating from your joints that sounds more like arthritis too. Flu-like symptoms and fatigue do sound fibromyalgiesque, however could also be many other things.
Widespread pain for me means - aside from many alternating local pains, which I've managed to get down to almost zero - a whole body Ache (always with a deliberate capital A) often due to "overdoing" it.
"Real" inflammation, i.e. measurable via ESR & PSR, means something else than fibro. The "inflammation" that might be one of the causes of it is not measurable to date, if it is there at all. But it does feel as if it is there when for instance we feel fluey-feverish, like I often used to. In my case I found it was due to ineffective sleep, which I've managed to improve. The connection might be via FM possibly having autoimmune roots (I think maybe along with others), which in a sense is inflammatory.
My suggestion would be that your doc may be right in both cases - fibro has many co-morbidities and our bodies are complex. What you could do is have a look at and try @sunkacola's advice pinned to the top of the forum, and if that feels promising, continue that route as well as the inflammation/arthritis one to try to analyze each symptom.

 

[Jemima]

Hi RaeleneN, welcome here!
- you've also posted the same here, maybe a technical glitch - not sure if you can delete the 2nd post yourself (left bottom, next to "edit"), but I'll answer this first one, let's see where others answer...:
I think fibromyalgia is like the name says is more a pain of the muscles / fasciae / ligaments, altho join pain is possible and named on the symptom lists. Stiffness like I have all day will look like it's the joints too. In my experience however, it isn't really the joints themselves, it's the muscles somehow "shortening" and putting tension on the tendon insertions above and below the joints. If I check each joint individually I realize this, including finger joints etc.
The burning sensation would be more nerves in fibromyalgia, so as you say the burning is radiating from your joints that sounds more like arthritis too. Flu-like symptoms and fatigue do sound fibromyalgiesque, however could also be many other things.
Widespread pain for me means - aside from many alternating local pains, which I've managed to get down to almost zero - a whole body Ache (always with a deliberate capital A) often due to "overdoing" it.
"Real" inflammation, i.e. measurable via ESR & PSR, means something else than fibro. The "inflammation" that might be one of the causes of it is not measurable to date, if it is there at all. But it does feel as if it is there when for instance we feel fluey-feverish, like I often used to. In my case I found it was due to ineffective sleep, which I've managed to improve. The connection might be via FM possibly having autoimmune roots (I think maybe along with others), which in a sense is inflammatory.
My suggestion would be that your doc may be right in both cases - fibro has many co-morbidities and our bodies are complex. What you could do is have a look at and try @sunkacola's advice pinned to the top of the forum, and if that feels promising, continue that route as well as the inflammation/arthritis one to try to analyze each symptom.

I read about a study that identified micro-inflammation within the brain in fibro sufferers (sadly not something us regular folks can get tested for) but I'd always understood that joint-local swelling is not a symptom, and nor are inflammatory markers that would show up in a blood test. I think that would suggest something else is going on, but as JayCS points out, lots of people with fibro have co-conditions!

For sure, sometimes my pain can feel as if it's coming from my joints, and the very first pain I experienced was in my knees. I really hope your doctors are helpful, and you get to the bottom of this in a way that allows you to manage everything

 

[JayCS]

Ooh, good that you've chimed in, @Jemima, I'd forgotten about this when someone somewhere else talked about being suggested they have "inflammatory fibromyalgia" (iFM). Suprised, I did a research-search on that and found a study from 2015 & a review from 2017 by the same persons, thinking about there perhaps being a "new category" and an "inflammatory subgroup" of fibromyalgia, iFM, characterized by cytokines & other inflammatory markers/indicators: positive ESR, CRP, ANA and RF, without developing anything autoimmune.
However 1 very large survey study (53k; 1125 with FM) interestingly found that the significantly higher mean CRP "may be explained, in part," with obesity/higher IBM and co-morbidities. (Similarly a case report from 2019 for CRP & ESR.)
No other studies that cited these except one article pro-iFM from 2019 by one person had anything relevant, so iFM has remained an outsider hypothesis.

---

2015: Inflammatory Fibromyalgia: Is it Real? and
2017: Autoinflammation and Immunomodulation in Inflammatory Fibromyalgia Syndrome- A Review,
both around Samy Metyas and Daniel Arkfeld
2017: Potential Mediators between Fibromyalgia and C-Reactive protein: Results from a Large U.S. Community Survey
2019: Myalgia with Elevated Inflammatory Markers in an Obese Young Female: Fibromyalgia or Polymyalgia Rheumatica?

---

Amongst other articles citing these, I found interesting
Italy, 2019: The juvenile fibromyalgia syndrome (JFMS): a poorly defined disorder - ah, some think young people having it is different?
Israel, 2021: Juvenile primary Fibromyalgia Syndrome (JPFS) - can't see differences in the abstract ("subjective joint swelling" mentioned)
India, 2021: Machine Learning (i.e. Artificial Intelligence) as opposed to traditional statistical analysis showed that the CVD (cardiovascular) risk is higher in FM. [cause or effect or both? if cause: stress?]
Saudi Arabia 2021: Pharmacy students & professionals were esp. likely to have FM, caused (apart from the 'normal' reasons) by higher working hours... [not surprising...]

 

[Jemima]

Ooh, good that you've chimed in, @Jemima, I'd forgotten about this when someone somewhere else talked about being suggested they have "inflammatory fibromyalgia" (iFM). Suprised, I did a research-search on that and found a study from 2015 & a review from 2017 by the same persons, thinking about there perhaps being a "new category" and an "inflammatory subgroup" of fibromyalgia, iFM, characterized by cytokines & other inflammatory markers/indicators: positive ESR, CRP, ANA and RF, without developing anything autoimmune.
However 1 very large survey study (53k; 1125 with FM) interestingly found that the significantly higher mean CRP "may be explained, in part," with obesity/higher IBM and co-morbidities. (Similarly a case report from 2019 for CRP & ESR.)
No other studies that cited these except one article pro-iFM from 2019 by one person had anything relevant, so iFM as remained an outsider hypothesis.

---

2015: Inflammatory Fibromyalgia: Is it Real? and
2017: Autoinflammation and Immunomodulation in Inflammatory Fibromyalgia Syndrome- A Review,
both around Samy Metyas and Daniel Arkfeld
2017: Potential Mediators between Fibromyalgia and C-Reactive protein: Results from a Large U.S. Community Survey
2019: Myalgia with Elevated Inflammatory Markers in an Obese Young Female: Fibromyalgia or Polymyalgia Rheumatica?

---

Amongst other articles citing these, I found interesting
Italy, 2019: The juvenile fibromyalgia syndrome (JFMS): a poorly defined disorder - ah, some think young people having it is different?
Israel, 2021: Juvenile primary Fibromyalgia Syndrome (JPFS) - can't see differences in the abstract ("subjective joint swelling" mentioned)
India, 2021: Machine Learning (i.e. Artificial Intelligence) as opposed to traditional statistical analysis showed that the CVD (cardiovascular) risk is higher in FM. [cause or effect or both? if cause: stress?]
Saudi Arabia 2021: Pharmacy students & professionals were esp. likely to have FM, caused (apart from the 'normal' reasons) by higher working hours... [not surprising...]

Ooooh, you're so good at sleuthing! Thank you for all of that

 

[RaeleneN]

Hello! Thank you so much for the advice. Inflammatory fibromyalgia is an interesting aspect and I’ll surely check out those articles. I felt like my doctor changed my diagnosis from inflammatory Arthritis to fibromyalgia based on my mother having fibromyalgia. I’m not sure if fibromyalgia is hereditary. However, I’m so very thankful for all the advice and your explanations. I’ll be going for a second opinion hopefully by January so maybe I’ll get more answers . Keep safe and well!

 

[RaeleneN]

Hello! Thank you for responding and your input . It has been quite confusing and frustrating at times because I’m not sure whether I have fibromyalgia or something else. I’ve noticed that my pain is worse with heat but it’s fairly manageable in the cold. My mom tells me her pain is everyday and never stops, just worsens at times. I feel like the weather mainly affects my pain so I’m not sure if it’s arthritis or fibromyalgia I’m really dealing with. I know everyone’s experience is different with fibromyalgia. However, thank you for the advice. Keep safe and well!

I read about a study that identified micro-inflammation within the brain in fibro sufferers (sadly not something us regular folks can get tested for) but I'd always understood that joint-local swelling is not a symptom, and nor are inflammatory markers that would show up in a blood test. I think that would suggest something else is going on, but as JayCS points out, lots of people with fibro have co-conditions!

For sure, sometimes my pain can feel as if it's coming from my joints, and the very first pain I experienced was in my knees. I really hope your doctors are helpful, and you get to the bottom of this in a way that allows you to manage everything

 

[JayCS]

I’ve noticed that my pain is worse with heat but it’s fairly manageable in the cold. My mom tells me her pain is everyday and never stops, just worsens at times. I feel like the weather mainly affects my pain so I’m not sure if it’s arthritis or fibromyalgia I’m really dealing with.

From all I've read about heat / cold / weather influence, it can definitely still be one or both...

 

[Charz]

Have you been checked for Lyme? Regular blood work many/most of the time won't be positive as it goes into hiding - joints especially. Google Horowitz's questionnaire and take it. I think it is a very good way to see if you possibly have Lyme.