Fibromyalgia - Not PsA

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Hi guys/gals,

By way of followup I have been seeing the new Rumy and Psychotherapist. They have me totally convinced I do not have PsA and infact do have Fibromylagia/Central Sensitization.

There is no trace on scans and no trace on physical exam. The Rumy got me to stop all PsA treatment and said “Is it possible i am wrong and you actually have PsA? sure. I dont want to disrespect the other Rumy’s medical opinion however i cannot detect it, the scans cant detect it. So if i am wrong and you do actually have it or have it a bit, then it is so minor we do not need to worry about treating it yet. So there is no problem stopping for now and exploring this first. However I really dont think you have it at all.”

I am putting it all below incase there are others incorrectly diagnosed. have the meds not helped you really? if you think about it? do you have widespread pain but never any detected damage? or not enough to explain the pain?

I watched a 1.5 hour youtube video they got me to watch on chronic pain/Fibro…
The guy basically described me for 1.5 hours.

All my other symptoms, Brain fog, memory, stuttering, dizzyness, anger… widespread pain.
My pain is weird… in that I have ZERO damage anywhere but pain everywhere that cannot be explained by detecteable damage. unless the brain is interpreting signals as pain in error and that makes sense…
they describe it like a volume control in your spinal cord that is turned way up… Need to move when sitting in an uncomfortable chair for a few minutes?. need to fidget. then after a while longer get up and stretch, walk around? Why? Why does it cause pain? there is no damage from sitting in a chair for 20 mins… everyone else in the world is fine… Its the BRAIN!

At first i was skeptical because why would i have flare up moments where my ankle/wrist is really bad and unusable as opposed to constant pain sensations.

After having looked deeper… the classic symptoms of Fibro are;

  1. muscle and tendon tightness and soreness. joints that feel weak, and flare ups that present as a pulled ligament in the joints that can last days, weeks and then goes away but remains weak.
  2. Mirrored pain both sides of body and both above/below the waiste
  3. sleep problems
  4. Fibro Fog - Cogntive function/memory
  5. Hyper sensitivity - Light, temp, medicines, emotions
  6. Anxitey, depression, panic.
  7. chest pains, heart palpiations

THE PAIN IS REAL BUT THE REASON FOR IT IS INVENTED BY THE BRAIN!!!

I really loved the term “Nervous system locked in a hyperactive state”

The above is me… Totally… I am the only person i know that can feel paracetamol when i have it… gets me slightly out of it! Just one example
All the meds i went on for the PsA made me trip balls…

Its easy for a doctor not knowing all your history to say “you have Psioriasis and sore joints” so lets go with PsA…

But im glad i got a second opinion.
Because i beleive this is what i have
hopefully this will help others… i read a lot of people may have PsA or Rheumatiod Arthritis diagnosis but also/instead have Fibro so i guess its something to think about…

im not upset at the other Rumy that diagnosed me and started treatments… he was trying to help me and being angry wont help

SNRI’s (Anti-Depressants) help apparently as its based on chemical imbalances, the rave drug Fantasy GHB is apparently a big help but not FDA approved but still being considered as it suppresses the nervous system. as well as natural lighter things like Kava from the pacific islands that actually relax you by suppressing the nervous system.

We are going the non medical way first… ie relaxation, mediation… changing how my brain thinks etc… i have much reading to do… and work… perhaps hypnotherapy.
being calm and happy and not letting triggers upset me etc.

I have improved already out of site in the past week i think just knowing… i had a flare on my wrist and ankle a few days ago but they have cleared and for the first time i understood. “No i didnt overuse it and restrain it” i thought i had to be so careful for so long with my weak joints, and when i hurt it thought what did i do “oh it must of been the shopping basket i carried” or whatever… No it just flares when it feels like it and goes away when it feels like it and my brain is behind it.

I view this as possitive news as it means my joints are not under attach and there is and will be no damage. Any symptoms are due to an issue i need to work on.

I dont mean to gloat. I know everyone on here is suffering and you all have been so nice to me with my coping at the start/misdiagnosis.

Here is the video i was told to watch

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The big problem is the reverse- when someone is told that the pain that they have and what they are experiencing is fibromyalgia, and all other treatment stops. We have people here who have been told that they have fibromyalgia, and that the joint pain is osteoarthritis, or nothing at all. When someone already has a psychiatric diagnosis, such as anxiety or depression this is even more likely.

I hope that this new diagnosis is correct for you, and that there is no inflammatory arthritis. For those who have been told that they don’t have inflammatory arthritis because their blood work is normal, I hope that they do seek out a second opinion. Seronegative autoimmune disease is a real thing. Being seronegative doesn’t mean that the disease doesn’t exist.

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In the Newbies Guide, there is a thread under Entheses and Fibromyalgia Tender Points that gives a some links to great resources, and has diagrams of the Entheses and Fibromyalgia Tender Points. From that, it is easy to see that the two sometimes get confused.

I must admit however that over many years of reading people’s posts, there have been so very many that have been initially told they have fibromyalgia or osteoarthritis (or as Stoney says, nothing at all), particularly if their ESR and CRP are low - but are eventually found to have an inflammatory arthritis. That doesn’t mean everyone who has pain and fatigue will, but it is certainly a common story.

In contrast, after nearly 5 years on the site, I can count on one hand the number of times where I read that members have found that central sensitisation was the primary problem, without inflammatory arthritis to be present. So it should certainly be considered in any diagnostic process, though I think the bulk of the diagnoses changes tend to go the other-way-around.

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Hi nickace. I hope your rheumy is correct and that this is indeed a turning point for you. Getting the right diagnosis is such an important step.

I don’t think there are many here whose PsA was diagnosed on the basis of pain alone. Pain is such a complex thing and the brain is much more involved that we realise for sure, whatever the condition. The type of pain, the intensity of pain, is also a very individual thing. Rheumys look for very specific signs of PsA and, awful as it is, pain on its own is quite a way down the list of symptoms I think.

You mention ‘pain everywhere that cannot be explained by detecteable damage’. It concerns me when people assume that PsA (or other types of inflammatory arthritis) can only be diagnosed by detectable damage. I realise that fibromyalgia does indeed cause such pain but no damage, but what PsA does to joints and entheses does not immediately cause damage as such, it causes inflammation. The inflammation should be detectable by a good rheumy or by some forms of imaging, but ideally it’s picked up before damage occurs! I just reckon we should put the idea that PsA can only get recognised once joints are already in a bad way to bed once and for all.

There are real pitfalls involved in suggesting that people with a PsA diagnosis may have fibromyalgia. Not least of which, as Stoney and Jen have said, is that many languish with this diagnosis for way too long only to discover rather late in the day that they actually have PsA. That is an all too familiar story. There again, if it is fibro you have then the sooner you know it the better and I hope this is the start of better times for you. But is it the ‘true’ diagnosis many of us with PsA have been blind to all along? I very much doubt it.

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I hope your rheumy is right–well, not really–fibro isn’t fun either!
I was wondering–do you have any of the telltale signs of PsA in your fingernails or toenails? I think when my doctors started seeing those “deformities” they started going towards diagnosing the PsA. I always did have moderate psoriasis, and doctors would always look at my fingernails, so when the nail deformities started along with the other symptoms I was having, it was a sure diagnosis. And, that came long before the PsA got bad enough to where I was willing to start treatment. (I should have started treatment right away, because maybe my back and feet wouldn’t be so awful now!)
Another thing, and I think a lot of members would agree, the symptoms of fibro and PsA so overlap, it is a difficult diagnosis to make…I’d say a lot of my problems seemed like fibro, but those same problems diminished or disappeared as soon as I went on a biologic. I don’t think biologics are used for fibro.
I hope your doctor is on the right path and helps you find ways to keep the fibro in check!

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It will be great if your rheumy is correct, although Fibro is definitely no fun too, at least it doesn’t cause permanent damage to joints etc… I guess a good trial without medication (or with appropriate treatment for Fibro) would be a good way to judge. I will keep my fingers crossed for you!!!

Trying not to be a downer here, but for others who definitely have PsA, or any of the other inflammatory arthritis type diseases, it is possible to have co-existing Fibro too. It is good to remember too that often it takes trials of a few different meds to get to one that will treat PsA successfully.

All the best with getting everything sorted!!!

I guess at the end of the day as long as the treatment works, does it matter what name it is given :blush:

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I had the reverse,I was diagnosed with fibro,getting pain killers and anti depressants and everything in between.
2 years later with severe joint damage diagnosed with psoratic arthritis,
I am sero negative too.

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Central Sensitization is a new umbrella term to capture the overlapping relationship between these syndromes and the pathophysiological mechanism:

  • Headaches (tension type)
  • IBS (irritable bowel syndrome)
  • Interstitial cystitis
  • Irritable larynx syndrome
  • Migraines
  • Multiple chemical sensitivities
  • Myofascial pain syndrome
  • Non-cardiac chest pain
  • Pelvic pain syndrome & related disorders
  • POTS (postural orthostatic tachycardia syndrome)
  • PTSD (post-traumatic stress disorder)
  • Restless leg syndrome
  • Temporomandibular disorders

I’m not sure I like it. It in its basic conception is a New PC term for what we used to call somatiform disorders. The result can lead to “doctor shopping,” and high health care costs. In short its a cop out. Psoriasis is a good example. We know that Psoriasis is NOT a simple skin disease, but rather a very complex ans serious inflammatory disorder that effects every body system.

I’m not saying that a mental health approach and PT/exercsie is not helpful, but so far the diagnoses of CSS has not helped most patients but has given rise to a whole new “pain industry” that lacks in any amount of Actual evidence. Its pretty darn simple to say the Brain is effected by early Trauma and go on to say the pain is real but the cause is not physiological. It is important to note that CSS can coexist with diseases with structural pathology (e.g., rheumatoid arthritis, osteoarthritis, and systemic lupus erythematosus (SLE)).

The concept that physical Damage must be present to prove Inflammatory Disease is utterly ridiculous and flys in the face of known and proven Science. (and infact is NOT required for a DX of PsA) Pain, Psoriasis, and inflammation are. Inflammatory Damage is a cumulative effect over time in EVERY instance. The fact that the body recognizes this progression is happening is NOT the result of misfiring brain but rather the brain working as it should. The fact that ones body doesn’t have notable damage after (and during) treatment for a Known Inflammatory disease is evidence that the treatment is successful NOT (or ever) evidence that a known disease is not present. Untreated Psoriasis WILL kill you.

That doesn’t mean one shouldn’t use every resource they can to manage pain. They should. BUT to believe a known and diagnosed disease doesn’t exist because it hasn’t killed you (or damaged you) is just plain wrong. “you have Psoriasis and sore joints” so lets go with PsA… is more than reasonable. Psoriasis whether or not it has morphed into Arthritis should ALWAYS be treated. Its a VERY serious disease on its own. The fact that the treatment for P or PsA is the same is fortunate for all. ANY physician that doesn’t recognize the seriousness of Psoriasis is one to avoid.

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That appears sadly to happen to many people Dav who end up having PsA. I hope it’s going better for you now.

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Well said.

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Thank you,It is some better now, At least now I get to try all kinds of things.Sometimes I think the meds may kill me sooner than the disease :slight_smile:
Dave

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On a somewhat different note, I was diagnosed 10 years ago with fibro. I did have mild scalp psoriasis and some large joints pain as well(I’m now positive it was PsA related), but the overwhelming overall pain was indeed fibromyalgia. The pain got better with Cymbalta, which unfortunately stopped working after a while.
As my pain got worse and got more joints involved, I chalked it up to fibro and that was that. After all, fibromyalgia is NOT a progressive disease.
But after years of suffering, I started telling anyone who would listen that in my case, it is progressing!!! Nobody caught on, probably because I was not saying the right things and my GP kept trying to treat my fibro to no avail. After being sent to Ortho and undergoing a few expensive procedures, because I have “signs of arthritis”, none of them helped.
So, it was time for me to do the legwork, I started keeping track of my aches, and separating what I knew for a fact to be the fibro from the ones that were “new” or just did not fit. After noticing pitting and ridges on my nails, everything clicked and I asked to see a rheumatologist, who confirmed my suspicion, but also confirmed the fibromyalgia.
I am blessed with BOTH!
Moral of this story is, just keep track of your symptoms, make sure you have the right diagnosis and are receiving the right treatment, but don’t fall asleep at the wheel, if new symptoms arise!
Stay awake and vigilant about your health and well being.
Good luck to all.

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I am also suffering from both PsA and Fibro. My Rumy has said it is both. My CRP was very elevated as well as having all the sensation points. Sometimes when the pain is bad it can be hard to tell the difference between the two. I will start meds in October. For the PsA hopefully I will see a change. I also struggle to find comfort in sleeping, standing, sitting, walking. I have been treated for depression and anxiety for the last 20 yrs. Being diagnosed with PsA and Fibro has confirmed the reason for the massive mood swings and elevated depression and anxiety and not prompted by over stress. This site helps so much knowing I’m not alone and someone else feels everything I go thru and not have to constantly explain why I feel the way I do every day.

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