Inflammation

Fibro56

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DX FIBRO
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02/2018
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I’m confused. I have been told by the top rheumatologist that I have fibromyalgia, that I don’t have any inflammation in my body.

I have swollen around my collarbone and chest. It didn’t show anything in xrays, CT scans. They just pushed me off like I was imagining it. They said it’s fibromyalgia because I have no inflammation. The I had a bone scan that showed I Inflammation in my chest, collarbone and rib cage. Now they are saying that they have seen this in fibromyalgia patients. Do fibromyalgia patients have inflammation? I also have had a low c-3 and c-4 complement thst went back up the next time they took it.
 

Affinity

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DX FIBRO
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05/2014
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I am not an expert but I have been to the rheumatologist more than once and I think when they say you have no inflammation I think they are referring to a specific marker on your blood tests that indicate inflammation, which is different from actual inflammation you might experience in your body. So when they say you don't have inflammation they mean you don't have the blood test marker indicative of inflammation as they measure it for rheumatoid arthritis. I hope that makes sense. And also I could be wrong!
 

RLG

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DX FIBRO
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07/2020
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MI
I’m confused. I have been told by the top rheumatologist that I have fibromyalgia, that I don’t have any inflammation in my body.

I have swollen around my collarbone and chest. It didn’t show anything in xrays, CT scans. They just pushed me off like I was imagining it. They said it’s fibromyalgia because I have no inflammation. The I had a bone scan that showed I Inflammation in my chest, collarbone and rib cage. Now they are saying that they have seen this in fibromyalgia patients. Do fibromyalgia patients have inflammation? I also have had a low c-3 and c-4 complement thst went back up the next time they took it.
Hello Fibro56. I, too, have inflammation--both visible and the kind that shows up on the bloodwork for it. I have been DX by both an Internist and a Rheumatologist for Fibromyalgia, but also told I have Psoriatic arthritis (PsA) with near certainty (by rheumy). Internist tested c-reactive protein (c-rp), it came back elevated. Rheumy tested High Sensitivity c-reactive protein (hs c-rp) a few weeks later, it came back High Risk elevated (level 3). Yikes.
Funny though, I TOLD the internist I knew I had inflammation because the pain and low grade fevers I get from it are helped when I take ibuprofen.
I'm not sue what c-3/c-4 are, is that c-reactive protein? If not, you could have your doctor test c-rp/hs c-rp, those are the inflammation markers. It is possible to have more than one cause for our pain, as I have learned.
 

Fibro56

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DX FIBRO
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02/2018
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NH
Thank you so much. I’m just not sure that I have fibromyalgia, my doctors day I do but I don’t think there sure. Does anyone ever start off with the doctors saying they have fibromyalgia then things change and they have an Autoimmune disease? It’s so stressful. It’s been two years of this and still no answers and I keep getting worse. 😢
 
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RLG

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DX FIBRO
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Does anyone ever start off with the doctors saying they have fibromyalgia then things change and they have an Autoimmune disease? It’s so stressful. It’s been two years of this and still no answers and I keep getting worse. 😢
I actually suspect I may have that very thing happen soon. I wasn't surprised at all by the fibro diagnosis, but I felt all along I have PsA. Both of my parents have it, and my child has 3 different auto-immune diseases, so...why wouldn't I? I was also told by rheumy that I have raynaud's, and I've been trying to get someone to notice that issue for years (sorry if I repeat myself, I know I've already said most of this on this forum.)
I am very sorry you are hurting and struggling to find answers. In that we are connected--I, and just about everyone here--can relate. It is difficult to find answers, and while years go by we are in PAIN. It stinks.
My 1st advice to you is to look to your family history if possible--big clues in genetics re: auto-immune. My 2cd advice is to pay close attention to your symptoms--when, why, how do they occur. Food related? If female, hormones? What activities, or lack of, contribute.
There is no test for fibro, so testing that rules out other things, such as lupus, RA, etc is helpful for fibromyalgia sufferers, because it tells us what it ISN'T.
Are you currently taking any specific meds for your pain/symptoms? If so, have you had any relief?
 

Fibro56

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DX FIBRO
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I’m taking Percocets as needed and I’m on celecoxib for my Information. I have tried to many different medication that seem to make me worse.
 

Fibro56

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Question, at what point do the doctors say that you don’t have fibromyalgia that you have an autoimmune disease? Or do they keep adding Diagnosis is on to your chart?
 

RLG

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DX FIBRO
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07/2020
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MI
I’m taking Percocets as needed and I’m on celecoxib for my Information. I have tried to many different medication that seem to make me worse.
Does the celecoxib help your inflammation? Does it reduce the swelling you find around your collar bone and pain in your rib cage? Pain in the rib cage can be caused by many things including fibromyalgia and costochondritis and cardiovascular problems, but if an anti-inflammatory reduces the pain and symptoms that is a sign it could be inflammatory.
Do you ever get low grade fevers with your pain? That is another sign of inflammatory issues, like RA.
I tried Mobic for my inflammation/pain. I heard good things about it, but it hurt my stomach and didn't work as well as ibuprofen did.
**But I want to say for the record that ibuprofen is not the cure all for me--if it was we'd all be taking it and not have pain, right? I have a whole lot of pain all over, not all of it inflammatory. Ibuprofen doesn't even touch my nerve pain or muscle spasms, and can't help my dizziness, nausea, fatigue etc. At this point I'll take any help I can get for any of it, though.
I advise you to consider all possibilities carefully and with proper discussion with your doctor. Pain in the chest area can be a sign of serious issues, and n-saids can cause serious side effects!
 

RLG

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Messages
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DX FIBRO
Diagnosis
07/2020
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MI
Question, at what point do the doctors say that you don’t have fibromyalgia that you have an autoimmune disease? Or do they keep adding Diagnosis is on to your chart?
I hope I'm not to flippant by saying that point would be when clinical testing shows it. EX: when my child was DX celiac it was after 1 1/2 yrs of horrible health problems and blood work and finally a biopsy of the duodenum. Then, the DX of same child's hashimoto's thyroiditis was result of blood work, same for DX of mast cell activation disorder. Auto-immune diseases are aplenty--I am sure there are thousand more I don't know about, each one with a different diagnostic criteria. Unfortunately, ruling out things it isn't seems to be a pathway to a lot of them.
What are symptoms now that have led your doctor to believe you may have fibro?
 

Fibro56

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DX FIBRO
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02/2018
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US
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Does the celecoxib help your inflammation? Does it reduce the swelling you find around your collar bone and pain in your rib cage? Pain in the rib cage can be caused by many things including fibromyalgia and costochondritis and cardiovascular problems, but if an anti-inflammatory reduces the pain and symptoms that is a sign it could be inflammatory.
Do you ever get low grade fevers with your pain? That is another sign of inflammatory issues, like RA.
I tried Mobic for my inflammation/pain. I heard good things about it, but it hurt my stomach and didn't work as well as ibuprofen did.
**But I want to say for the record that ibuprofen is not the cure all for me--if it was we'd all be taking it and not have pain, right? I have a whole lot of pain all over, not all of it inflammatory. Ibuprofen doesn't even touch my nerve pain or muscle spasms, and can't help my dizziness, nausea, fatigue etc. At this point I'll take any help I can get for any of it, though.
I advise you to consider all possibilities carefully and with proper discussion with your doctor. Pain in the chest area can be a sign of serious issues, and n-saids can cause serious side effects!
Yes celecoxib is an amazing drug for pain and inflammation. I had a bone scan that showed my inflammation in my body. They say it’s Costochondritis, but I have had it since my symptoms started over two years ago. That’s a long time for Costochondritis. If I stop taking the medication my pain get worse right away. I don’t think The inflammation is part of my disease but they just can’t figure out what it is.... i have tried over the counter anti-inflammatory medication but I was taking to much and ended up having a lot of issues. So be careful how much and how often you take them.
 

Fibro56

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02/2018
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Well she says I do but also says she isn’t sure if it is, I have symptoms of both fibromyalgia and autoimmune disease. I have been very sick for two years. I have flares that are really bad lasting about 4 months at a time. When I’m not in flares I have a lot of side effects. I have never had pressure points. I have inflammation that shows on my bone scan around my ribs, collarbone and chest. I have memory and processing difficulties. I have problems getting dress at times, getting in my car or even hugging someone. It feels like someone is hugging hard at times. I’m in pain a lot at night and have a hard time sleeping. My markers are off but not all that bad... One time I dropped to the floor like I was Paralyzed with no loss of Conscience. I have what feels like bands around my upper arms at times bilaterally. There is a lot more..... I guess my quality of life isn’t that great.
 

Affinity

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DX FIBRO
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Fibromyalgia is a diagnosis of exclusion meaning often if they can't figure out exactly what you have and you fail the other tests they call it fibromyalgia. There is no definitive test for fibromyalgia so it's also like they say "we don't know exactly what's wrong with you but you have things in common with this group so we will put you here". So U can imagine people are diagnosed with autoimmune diseases after fibro both replacing the fibro diagnosis and adding onto it.
 

Fibro56

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Messages
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DX FIBRO
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02/2018
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Good I’m glad they do. It seems to me they just keep adding on to the Fibro dx., so I’m glad to hear they replace it.
 

JayCS

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Joined
Sep 5, 2020
Messages
262
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Fibro and/or autoimmune?: (Fibro56, you've just helped me for sth. completely different with your questions, and Affinity you with your answer...!)
After my 1st rheumy denied Fibro, I sent all my stuff in to a centre for rarer/unknown illnesses, directly after my 2nd rheumy did dx Fibro.
Months later, the centre interviewed me and did most extensive bloodwork and obviously wanted to replace the Fibro dx with the autoimmune one, claiming fibro is an unsatisfactory dx and I would surely want to know what's behind it, and then dxing Hashimoto and suspecting Sjögren's.
Directly after this I went into a rheum. clinic and tried to plug this. But they (3-4 rheums) instead said that isn't really important, because in the face of my symptoms, it wouldn't make much of a difference. Then I asked back whether I should delay the pain clinic I wanted to go to or the further dxing of Sjögren's, to which they answered: the pain clinic - even tho the dxing shouldn't be neglected. Both of which sounded like they in contrast would add it on to Fibro.
Now where you've helped me: Despite this, my insurance has surprisingly refused to pay for the pain clinic, the multimodal therapy there being too close to the multimodal therapy in the rheum. clinic, and ambulant treatment being just as effective now. Two days before I was due to go in for it (tomorrow)! One of the reasons for this may be that the rheum. clinic only indicated the pain clinic in their disappointingly short report, by too slightly referring to 'further pain treatment which has already been implemented' although they had explicitly said it was a good idea.
Because of this I am thinking about filing an objection, and trying to ask the rheum. clinic to support it. That's the idea you just gave me, so thanks for that!
(If they still don't pay, my ambulant cryo plus "acupunct-massage" is probably more helpful anyway.)
 

Marvis

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Joined
Jan 28, 2017
Messages
139
Reason
DX FIBRO
Diagnosis
05/2016
Country
CA
State
Ontario
My doc recently clarified for me that, with fibromyalgia, I do have inflammation, it just doesn’t show up on blood tests. I was like ‘THANK YOU!!!’ I don’t know why they keep saying there is no inflammation when we clearly have it. It’s just that, for reasons I don’t understand, it doesn’t show up as inflammation markers in our blood work.
 
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