Is joint pain Fibro?

I used to just get just burning in my joints but things have changed and I don't know if it's Fibro or something else. Last year I was able to kneel down and pull weeds but this year my ankles, wrists and knee joints are extremely painful and weak when I try to push myself back up. The right knee is the worst of all the joints when I walk up stairs,etc.

Is this normal for Fibro or is there something else going on?

Fibro can make your joints feel tender. If it's more severe it possibly could be some arthritis. I do have both. I haven't been able to kneel for years because of fibro. The arthritis seems to affect my hips, elbows and fingers.

Only a doctor can tell you for sure. If you are in a lot of pain. Do talk to your doctor about this or go to a rheumatologist for a diagnosis.

Sherrine

Thank you for all the information! It's so very kind of you. I have just one question.. what are mast cells?

Rockon said...
Pain at my ankles and wrists tip me off that I am not getting enuf deep sleep and enuf of the benenefit from that: more growth hormone for needed daily tissue repair. I guess I do less now than I did when I was married and keeping up with a house and another person (vs a small apartment now), so my wrists don't bother me much anymore. If you use anything to improve stage 3 sleep, it might help to address that for a while. I use amitriptyline (nortriptyline has fewer side effects) for better sleep, less pain, and whenever I get a new doctor I clear it with them that I am going to bump up the dose a bit for a few days sometimes.

I think Purple_lynx has opted not to use amitriptyline on a nightly basis. Just uses it during a flare. Might be a handy thing to have amitriptyline or nortriptyline to fall back on when things seem worse.

There may be a type of immune cell that contributes to certain patients having inflammation. I have noticed RA studies connecting mast cells to inflammation at the joints.
Someone at myPatientMatch has hypermobility (Ehlers Danlos to be exact). She explained to me recently that a problem that some of the Ehlers Danlos people run into is having mast cells in connective tissue degranulate and in the process they release the inflammatory cytokine TGF-b1. She also has a fibromyalgia diagnose (probably common in EDS with hypermobility).

Likewise that is another way some of us might come to have pain and inflammation around joints. Blanco et al. did the fibro study that found 100% of their fibro cohort had more mast cells (an immune cell) in their skin biopsies. And some of those mast cells had the abormal spindle shape.
I saw a study of Mastocytosis patients (1994 study?) that found in mastocytosis patients the predominate shape was the spindle shape. There are different mast cell diagnosis': mastocytosis which has an over proliferation of mast cells, and MCAS is mast cell activation syndrome, which is over reactve mast cells.

It's a little off topic, but find it interesting that a lot of the patients I see who are sensitive to mold have mast cell problems. And it's interesting that Dr. Shoemaker (he had CFS) tests for TGF-b1. What I undersood from an interview with him is that TGF-b1 helps him judge mold sensitivity...I think I interpreted that correctly. It was Dave Asprey at Bulletproof Executive that did that interview on a podcast (youtube, if anyone wants to see it and double check my memory).

There are more mast cell triggers in fibro patients: substance P and neuropeptide Y. To be precise, more substance P when they looked in cerebral spinal fluid and muscles.
It's very interesting to me that a Dr Theoharides' team did lab experiments and found that amitriptyline was able to stabilize brain mast cells. ---btw, if anyone doesn't know it, nortriptyline is a metabolite of amitriptyline. What amitrip would break down to at some point. A little off topic, but they found that another tricyclic antidepresent, which is used off label for nausea and vomitting, stabilizes the species of mast cells that's in the digstive system..

NAID's are anti-inflammatory and so I use ibuprofen for that. I also eat 6-7 green Spanish for lives a day because they have something in them that acts like an NSAID naturally. If I'm having a bad day, I add Tylenol when needed.

I also keep moving. This does help me. Years ago I was struggling with arthritis in my fingers. I could barely hold a pen to write my checks, couldn't open jars, etc. When getting blood work done one day, they had me squeeze a "ball" type thing and it had advertising on it so I figured they had a lot of them. I asked if I could have one if they had extra and they gave me one. I would use it when watching TV to exercise my hands and hopefully make them stronger with less pain and it worked! My fingers now usually don't bother me.

Walking and doing gentle exercise helps keep the blood flowing and oxygen to the body. I wouldn't suggest you head to the gym but loosening up really helps keep the pain under control.

You might go to our arthritis forums and get suggestions there also. I hope you will find what works best for you. If this continues, ask your PCP for a referral to see a rheumatologist. It may take an act of Congress but you ARE paying them for their services!

Sherrine

I belong to a low oxalate group and they talk about mast cells and histamine but I've never understood what they are saying until I read what you wrote. Thank you for helping me understand.

So, if I read correctly, allergens and some medications can cause mast cell problems which can lead to inflammation? Is that the short of it?

Rockon said...
This can get so complicated I half wish I had not brought up this topic, and half of me really wants to understand, especially if Interleukin 17 is involved. Although I cannot possibly devote myself to learning everything about this topic, I did decide to skim thru a few studies. Some I read I just will not understand without a whole lot more reading of definitions.


Interleukin-17/IL-17 is a pro-inflammatory cytokine that participates in various autoimmune diseases involving inflammation. I see that there is a search for IL-17 inhibitors for inflammatory disorders such as RA, & psoriasis (which I have sometimes). In mice they have found over expression of an IL-17 gene leads to asthma...and I have asthma.

In one fibro study by Pernambuco et al., IL-17A was found in fibro patients.
--------------------
There is this:
Title: Mast cells are the main IL-17 producing cells in synovium of anti-citrullinated protein antibody-positive and -negative rheumatoid arthritis and osteoarthritis patients. Suurmond et al. 2011
Quoting:
Results: The number of IL-17+ cells was comparable in ACPA+ RA, ACPA− RA and OA patients. The vast majority of IL-17+ cells were mast cells in all three groups (median ranged from 93% to 97%), whereas T cells and macrophages contributed only slightly. Importantly, levels of IL-17 in synovial fluid of ACPA+ RA patients were significantly higher than in ACPA− RA or OA patients.

Conclusions: Mast cells are the main cell population producing IL-17 in all three disorders analysed. Possibly, selective activation of mast cells in ACPA+ RA patients is responsible for the increased IL-17 levels in this group. These data are relevant for studies aiming to inhibit IL-17 production in the treatment of arthritis.
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And regarding IL-17A, here is this study. Title:
Interleukin-17A: a unique pathway in immune-mediated diseases: psoriasis, psoriatic arthritis and rheumatoid arthritis. Kirkham et al.

IL-17A is produced by many other cell types including CD8+ T cells and γδ T cells, and is found at high levels associated with mast cells and neutrophils at sites of skin and joint disease in humans. IL-17A up-regulates expression of numerous inflammation-related genes in target cells such as keratinocytes and fibroblasts, leading to increased production of chemokines, cytokines, antimicrobial peptides and other mediators that contribute to clinical disease features.
Importantly, IL-17A must be considered within the context of the local microenvironment, because it acts synergistically or additively with other pro-inflammatory cytokines, including tumour necrosis factor.

..... Clinical response rates with IL-17A inhibitors in psoriatic arthritis and rheumatoid arthritis, however, were improved to a lesser degree compared with placebo, suggesting that IL-17A is either important in a subset of patients or plays a relatively minor role in inflammatory joint disease.

Joint pain? Have you considered Lyme Disease?


I am going to go out on a limb & guess some of your other symptoms.

Numbness, tingling, pins/needles, tremors/vibrations, burning in parts of your body, brain fog, head pain/pressure, neck pain, ear ringing, eye disturbances, GI symptoms, chemical and food sensitivities & trouble sleeping.

The pain & burning & all the symptoms I listed above can migrate from day to day and with intensity. One day they can all subside & the next they you get a chunk full of symptoms above with various intensity.


If it gets worst then you will also have night sweats & sometimes day sweats. Shortness of breath that comes out of nowhere & then just goes away to come back again, even when your just sitting down. And sometimes heart palpitations & your heart goes racing for no apparent reason, as you could just be sitting down & your heart just starts pounding.


Just know that the testing for Lyme is poor & that it can miss 50% of positive cases. We are all waiting for better testing.


If so, then you are a good candidate for Lyme Disease. Watch the documentary below.
https://www.viewster.com/movie/1193-15367-000/under-our-skin/

The 2nd part to the documentary is here & I don't know for how long it will be up.
https://photos.google.com/share/AF1QipMPtByTwh0HHfjRgqmmu4c2U_uxoF-M_rWSRZT91wZENpHNfiK0kZN31iuXim8TqQ?key=WG5rcjU0aUMyODJIVV8zYWZXR1pGS3dobXJUSFdn

Post Edited (Jackss) : 5/14/2016 7:04:56 PM (GMT-6)

Thank you, Rockon! It's a bit overwhelming but I appreciate all your information. I'll continue researching. Take care!

Rockon said...
Mast cells are not a happy solution to our problem. They are pretty hard to manage. Available medications for stabilizing mast cells don't inhibit inflammatory cytokine release. One patient I know uses a med, and a supplement created by Dr. Theoharides, who also has a Phd. in pharmacology. I am still a rookie, trying to learn what I can by reading and exposing myself to others doing the same same. I am without an official diagnosis, but I am very confident that I have mast cell problems. There aren't many doctors or labs knowledgable enuf to properly run tests. I think I am closer to being able to help a doctor and lab get it right.

I would start by reading at my link "Reference thread to share mast cell information.". When I find helpful info from other mast cell patients I add it there. Also try to learn the triggers list and avoid triggers.
Yesterday I started my day short of breath, and I think I got my bath too hot, especially considering I was already challenged. I am going to get a space heater so that I can comfortably take cooler bath. Too often I have to lie down before I am even all dried off, because I just feel weak and/or shakey.

Read read read. There are online mast cell groups, facebook groups. Sometimes I go to mastcellmaster.com and see what the Tuft's researchers are finding. That's where Dr. Theoharides is.

I have watched or listened to videos on youtube, and this week I got the book that Tiger Tales recommended on her latest thread here. It's over 400 pages. I usually cut big books in half with a razor, and I am trying to decide whether I will do that to a reference book. I can see that it has a great glossary in the back, and I hate to desecrate a reference book but it's heavy.

Yesterday I did a jog across the street (my second of the day) because I really wanted to catch a bus, and besides the asthma that it caused, it really hurt my throat and I could not calm my throat for over a 1/2 hr. Turns out the bus driver takes a 15 minute break there. Geez. So during the wait I pulled out my phone and googled "exercise induced asthma". The first paragraph at this site said:

"[What do] Chronic illnesses such as Allergy, Autism, Chronic Fatigue Syndrome (CFS), Fibromyalgia, Lupus, Chronic Lyme Disease, Interstitial Cystitis, Multiple Sclerosis, and more have in common? Well, these illnesses may have a lot of things in common, and a lot of overlapping symptoms, but many patients symptoms seem to be compatible with Systemic Mast Cell Activation Disorder (MCAD)."

Later they added CRPS/Chronic Regional Pain Syndrome to the list.
/allergycliniconline.com/2015/02/13/allergy-chronic-illness-and-systemic-mast-cell-activation-disorder-mcad/

Then last night I had horrid muscle cramps in different muscles in both my calves and my feet. Maybe running is similar to vibration, thus being a trigger to mast cells. Or maybe the muscles got "wired and tired", to quote a researcher. Or maybe my experiments with new forms of magnesium are to blame....but if so, then why the delay? Maybe reduced oxygen led to reduced ATP, and I should not have ignored the rules of "pacing".
----- ------
I wonder if the burning pain you used to experience in your knees might have been mast cell mediated. I'm not sure. I have read that a burning mouth is a symptom, burning skin, burning along with underlying pain in the bones (bone pain is from mast cells), & I have read that the burning of acid reflux is attributed to mast cells.
And just a "by the way", another reason I want to address mast cells in my own life is that they can cause osteoporoses.