I’m new to this community and would love any recommendations or sharing of similar experiences. I was finally diagnosed with PsA in my mid foot area after a few years of foot pain that was treated with steroid injections into the foot and orthotics that didn’t help… I was put on IV Simponi Aria for a year, after a MRI of my foot showed severe bone erosions. MRI at end of that year was “stable”, no further erosions…but I felt sick on the Simponi all year and also my pain was increasing. So, was switched to IV Actemra - but pain continued to increase. I got a second opinion, and the new doctor suggested Otezla instead of the IV infusions. I’ve been on the Otezla now for a year, MRI shows no further erosions still – but my pain continues to increase!!! Along with the pain, stiffness has greatly increased and along with all this, my mobility has now been greatly compromised. I can’t stand up for more than about 30 minutes before needing to rest with elevated legs, and I can’t walk well enough to do my grocery shopping (the stores are so huge now, from veggies to milk seems like a mile!!!) Very recently, I was in for another checkup, and rheumatologist says now that the pain and stiffness and brain fog I’m having is most likely fibromyalgia, that the pain is not from the arthritis - and said to see a neurologist! He pressed on my feet and my fingers and they were sore but I wasn’t jumping off the table – then he squeezed my deltoids and it was EXCRUCIATING!!! Same with my calves!!! So, now I am looking for information about this combination of PsA and Fibromyalgia - does anyone have tips on how to cope, any articles to share that you’ve read? I’m starting my research now. I am really struggling with a lot emotionally as well, depression. The majority of mornings now, I get up and the struggle of getting dressed and trying to do a few tasks around the house is just so exhausting. This fatigue is very lifestyle limiting. HELP???
I have a lot to say here. i am still finalising my situation but i have fibro and psa. the psa is low level and does not seem to be joint involved at this point (just tendon and ligament) touch wood. but i have had lots of pain and inability in my joints for years… I have done a lot of research and the 1 thing ive discovered the theory is as follows;
PsA and Fibro are both 2 very rare conditions. you would be unlucky to get 1 of them. extremely unlucky to have both, yet more and more people are coming out of the woodwork with both conditions. why is this?
Its likely you have a genetic predisposition to PsA like many people who get it or those who never get it.
So whatever happened in your life that triggered the fibro happened. which in turn puts you in fight-or-flight mode (stuck in high levels of cortizole), which in turn brings out a lot that was dormant in the body and may of never otherwise triggered.
ie sensitivity to pain (which was likely already there), skin rashes (psoriasis, dermatitus, rosatia, lypomas, swellings) and many other wierd and wonderful things that you had a genetic capability of having some day. Often fibro patients get some or all of these.
So its likely if you have fibro and had a predisposition to the possibility of getting PsA someday then on it comes with everything else.
So likely your main issue is Fibro. Fix it and perhaps all other wierd and wonderfull things that activated as a result of being stuck for an extended period of time in high-cortizole-mode may resolve too. or maybe not.
the Most effective treatment for fibro is mental health based (in my experience) ie being calm and meditating and relaxation, positive attitude (i will be posting a fibro related post soon on my epic recovery to help others outlining this in more detail) for now though the same goes for drug based fibro treatments that keep your brain chemistry/anxiety/depression in check… this will all improve fibro to some extent… which in turn will lessen any PsA symptoms if you have them.
But of course it can be argued that doing all those things improves symptoms of stand-alone PsA too so the above theory might seem silly to some. But ofcourse it can be summerised as if symptoms of PsA worsen with stress, nothing will stress your body like having fibro (high cortizole mode)
ive accepted this theory in regards to myself and continue to try to lessen my symptoms via the fibro route. as well as pSa treatments I am finally about to start. Yay not.
I know for me when i nearly died walking through the doors of the gym 6 years ago with a serious panic attack and not knowing what was going on at the time. that was the start of my fibro… within days i had Psoriasis all over my scalp and rosatia and dermatitus on the face, followed by bad wrists within a few weeks and then more and more pain points gradually over the years to come.
as mentioned above i will post my discoveries with pain reduction for fibro / sensitisation syndrome.
I would just like to add that on the surface being told, relaxation and attitude is the thing can seem silly and pointless. But you would be surprised just how far you can come. I had my life back after being basically disabled. I would love to share my experience with you and assist if possible.
@nickace you mentioned the fibromyalgia coming first. I think it’s more typically the other way around. Either way, as long as the PsA is being treated, and lifestyle management strategies are being used, an argument is not needed here.
@Stoney I believe it’s the fibro diagnosis that usually comes second. And that’s because fibro is also considered a new condition that is getting more and more accepted. So that will change.
I’m not saying everyone is the same and I have no proof is just the theory I subscribe to for myself. It makes sense to me. And I share it in the hopes it will make sense to someone else. Or not.
@Denise This seems like a rather odd response. I’m not saying that you don’t have fibromyalgia, but there’s a large overlap in tender points and enthesitis points. In addition, stiffness and inflammation are hallmarks of arthritis. And fatigue can play a huge role in PsA. I’m not sure of any the basis of the fibromyalgia diagnosis at this point
Well your entitled to your opinion but there is certainly a lot more information that you don’t have available to you regarding my situation to make that assessment about me.
There are many more symptoms and characteristics of fibro that are not a part of psa…
Bit of a conversation starter Denise! I think Stoney was referring to your fibromyalgia diagnosis (not Nickace), but I’ll just put in my bit rather than trying to comment further on the earlier ones.
From what I understand Denise, you initially had localised pain in your mid-foot. Took a while to be diagnosed, had some erosions on MRI and was diagnosed as PsA. At this stage, you had no obvious stiffness, fatigue, and brain fog. You were given some medication that was effective in slowing/halting the erosions, and it kind of seemed (at least to the Rheumy), that was that.
Then, despite the meds being effective at slowing or halting the erosions, you got significant stiffness, fatigue and brain fog, and some odd pains in your muscles? Or near your joints but not in them? At which point the Rheum suggests Fibromyalgia.
So… a few things that are worth knowing. The tender points for fibro are so very close to those for enstheitis (with PsA), you really want an expert doing this. Unfortunately for us lay people, it’s frankly pretty hard to tell whether they know what they are doing or not.
Then, of course PsA is progressive. The amazing treatment we have now means it’s not debilitating to most of the people most of the time (and we even have treatments that halt radiographic damage), but it is still progressive. So, for example, few of us here who have been doing this for a number of years would be even remotely surprised that it started in one joint, spread to a few others, then the fatigue and brain fog joined in.
Whilst this progressive development from a localised joint effect to a systemic body effect is not my story, it is the one that most of our PsAers share here.
In addition, there are a number of studies that have shown that some biologics can prevent radiographic damage, whilst systemic inflammation (and its symptoms) perplexingly remain.
So, I would definitely be questioning and double-checking the idea of fibromyalgia. Mainly because if the symptoms are due to PsA, then treating them with fibro treatments is likely to be counterproductive. On the other hand, if the symptoms are due to fibromyalgia, then if you take the full-on three legs of a stool approach to your PsA, then that should be pretty effective for fibro also, and there is effectively nothing lost.
Of course. I’m not trying to say that I’m an expert on anyone other than myself, as you are for yourself.
No need for extende discussion, really. The link between FMS and PsA is clear and has been establish since 2013. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3586452/
Simply put in this rather extensive study: FMS was present in 53.33% of PsA patients compared to 4.54% of the controls. It could be because of the overlap of tender points and the much easier to meet criteria to meet for FMS (a syndrome not a disease) than PsA (an actual disease), but it is largely a moot point.
PsA is far more treatable and treatment is absolutely necessary to avoid crippling joint damage. Life style changes while critical to PsA are absolutely necessary to have any effect on FMS (medication is of little help to FMS but those meds that do primarily anti-depressants and anti siezure meds to slow down nerve firing) also have an effect on pain levels from PsA .
Frankly I don’t see why there is any disagreement or why this discussion has taken a nasty turn with finger pointing and accusations. Keep in mind there is no such “disease” as FMS. It is a syndrome or more simply put a collection of symptoms that can be from a multitude of causes (disease among them)
With almost HALF of us having co-occuring FMS, we simply have chosen to concentrate on what is progressive, crippling, and treatable.
Thanks for sharing your story thus far. I look forward to reading the post you say is forthcoming on pain reduction for fibromyalgia. I have long believed that disruptions in our physical body can often be related to emotional stress. I did have a very traumatic period in my life 18 years ago, that still affects me today – My body at first reacted with terrible reflux (GERD) that was resistent to all treatments tried. I very directly still relate “flares” of the reflux as being stress reduced, and often related to a recalling of that traumatic time. I think that perhaps my taking PPI’s (proton pump inhibitors like prilosec, nexium, etc) consistently for many many years has affected my gut flora substantially. There is now a sign up in my pharmacy to not take the PPI’s more than 4 weeks and then stop. Back then, this wasn’t the norm, and the gastroenterolgist told me to keep taking it regularly to avoid having Barrett’s esophagus in the end. At any rate, I wonder if this is the root of my inflammation. I haven’t read any connections, but intuitively it kinda makes sense to me.
Jen, thanks for your thoughts. It is true that the biologics I took halted the mid foot severe erosions from getting worse - but the severe inflammation continued to progress substantially - My CRP levels have always been and still are very high, but my sed rate is normal. I worry somewhat that the CRP levels being so high, reflecting high inflammation, will eventually also affect my heart, as crp is high in heart patients. All that said, I was not even aware of the enstheitis with PsA that you mention, no doctor has said that to me. So, I will start researching that as well, thank you. I often feel like my bones are “on fire” on the inside - it is such a strange feeling. When at its worst, the only thing I’ve found that helps to calm it down a bit is to use a TENS unit (which i think maybe distracts me and focuses my mind on something else?) along with calming meditation. The burning remains but I seem better able to cope and “tell the sensation” that I recognise it, acknowledge it, and would appreciate it calming down. (biofeedback)
As you can see, I’m trying EVERYTHING I can - alternative therapies to supplement the western medical ones. I have gone to ayurvedic (didn’t help), a Naturopath (helped a little), Acupuncture (didn’t help)… and am open to anything else anyone has tried. My goal is to increase my quality of life, despite this inflammation that is dragging me under at times.
Stoney, thanks for your comments also. I have been thinking that all my symptoms were related to the PsA up to this point. This latest visit to the rheumatologist was when he poked on my mid foot joints and my fingers, etc - and then slightly squeezed (at the same time) my upper midarms and my mid calves – and I came up off the exam table with pain. Those points were excruciating. He then said that I needed a neurology workup, because the pain I am having now is unrelated to PsA. I believe what you are saying is that the pain could instead be a result of “tender points and enthesitis points” - and this is something I’ve not heard of before. Do you by any chance have any medical articles to share on that? I have a lot to learn.
Tntlamb, I appreciate the article you shared. The PsA medications I’ve taken so far (simponi aria, then actemra, and now Otezla) have stopped erosion progression, but have never helped my pain in the least. I was taking Celebrex for a while which helped some, but I developed a bad colitis and the gastroenterologist at that point said “no more nsaids”… so now I struggle with the pain which is increasing, the fatigue that is increasing substantially and the new found brain fog - which is no unlike a person reports that has attention deficit disorder. My focus is way off, I can’t seem to complete a task without distracting, and going to something else, and then realizing I didn’t finish the first task, etc… this is very new to me and it is very disconcerting to my lifestyle in general. My goals at this point would be to increase my life quality by somehow increasing my energy level, re-gaining focus, and decreasing pain enough to have more mobility. Before PsA, the best way I found to rejuvenate myself was by traveling, especially to places where I could learn about another culture – and now, I have been “stuck” at home for the past 3 years pretty much, and am LONGING to return to some of the favorite places I visited in the past and also to go to new places – but with this current state of my “body”, it seems impossible to do. I am open and willing to try anything to help decrease inflammation and feel better. I saw my internal medicine doctor this past week for my annual physical, and she ordered gabapentin for me to use for the fibromyalgia diagnosis – all my labs were perfectly normal (cholesterol, glucose, hgb/hct, liver tests, etc). You mention lifestyle changes needed for FMS - can you expound on that aspect further?
Well don’t shoot the Messenger LOL:
These tips from the National Fibromyalgia Association may help you get started in an aerobic Exercise program.
- Start slow. If you’re moving more today than yesterday, that’s progress
- Listen closely to your body. It’s important not to overdo it. Don’t increase your activity too quickly
- Start with just a few minutes of gentle exercise a day. Then work your way up
- Walking is a great form of exercise
- Track your progress. Note the exercise you’re doing and how you feel both during and afterward
- Stretch your muscles before and after exercise
- Post-exercise soreness will decrease over time. But respond to your body’s signals and pace yourself
Note the word Aerobic Its critical, There was just a review of over 16 controlled studies. Best estimates of what happened in people with fibromyalgia when they did aerobic exercise compared with when they received control interventions (medication only
Each outcome below was measured on a scale from 0 to 100, on which lower scores were better.
HRQL after 12 to 24 weeks: People who exercised were 7% better (or 7 points, ranging from 3 to 13 points) and rated their HRQL as 48 points versus 56 points in the control group.
Pain after 6 to 24 weeks: People who exercised were 11% better (or 11 points, ranging from 4 to 18 points) and rated their pain as 56 points versus 65 points in the control group.
Fatigue after 14 to 24 weeks: Those who exercised were 6% better (or 6 points, ranging from 12 better to 0.3 worse) and rated their fatigue as 63 points versus 68 points in the control group.
Stiffness after 16 weeks: Those who exercised were 8% better (or 8 points, ranging from 1 to 15) and rated their stiffness as 61 points versus 69 points in the control group.
Physical function after 8 to 24 weeks: The aerobic exercise group was 10% better (or 10 points, ranging from 15 to 5) and participants rated their physical function as 37 points versus 46 points in the control group.
FWIW those numbers are essentially the same as improvements from no intervention to invention with medication
PUT SIMPLY AEROBIC EXERCISE NEARLY DOUBLED THE EFFECTIVENESS OF ANY INTERVENTION.
Early data indicates the the addition of Tai Chi and or Specific Yoga increase the effectiveness yet again.
Many supplements make the situation WORSE as they interact with any medications you are using. Check any you might use with your Doc (not the internet)
Thanks everyone. I apologise if i came across in an agitated manor and if i miss interpretted something. I was just responding to someone who has advised they suffer from both conditions like me.
Right or wrong in my advise. i felt i came under fire. but we all agree treatment is necessary.
@Stoney put er there brother. all our hearts are in the right place and this is not the place for conflict. plenty of that out in the world.
if people feel im miss informing people and are concerned please advise me. im no expert. i simply have my own experience of confusion and uncertainty.
its a really tough one. Fibro & PsA The way they diagnose fibro is when you have a multitude of symptoms and pain with no evidence or reason for it detectable, yet the pain remains so the only thing left is it must be the brain causing it.
However PsA has a reason for the pain (ie joints, tendons under attack) so if you have evidence of PsA ie joint damage, multiple enthesitus points etc, it is quite hard for any expert to detect the fibro if its there. Its reasonable to point the finger at the cause you have discovered. and on the other side of it. PsA can also present with no detectable evidence, so you’ll get diagnosed with fibro until later evidence appears (at least thats what happened to me. although a different doctor will simply link the presence of Psoriasis and widespread pain = PSA . which is a reasonable assumption.
And it looks like you were all right on that point, my journey has been difficult and confusing with contradictory information from doctors and research, forums etc. but the fibro is definately there for me - i score a 21/31 on the symptom test (cant remember the name of it)
they mark you 13+ = fibro and under is Central sensitisation Syndrome. so fibro is simply an umbrella term and everyone is different.
What came first the chicken or the egg? who knows. But we all agree on the fact that it hurts.
When I was able to still be a hypnotherapist, I treated a lot of fibro clients, all were women. My studies into what causes fibro and what I saw in client history was that prolonged stress seemed to bring on the fibro after years. Unfortunately, the vast majority of ladies I saw were in a lot of pain. Also, probably 90% of them had experienced sexual abuse or child abuse at some point in their lives.
I agree that the mental aspect of fibro plays a big part in getting relief, but probably not a cure. As a hypnotherapist I treated my clients for chronic pain and stress relief. The results after 4 or 5 sessions was very positive.
I wonder if fibro is like PsA. Once it is turned on, you got it, and it does turn back off.
If anyone has had PsA for a prolonged period of time I would think it would be easy to relate the stress from it and the chronic pain to an onset of fibro. I think fibro is as misunderstood as PsA, and I think the treatments are also hit or miss.
I am beginning to think I also have fibro. I suffered from chronic drug resistant depression for over 30 years before it was brought under control. Then chronic pain since a car wreck in 2004 and 4 subsequent neck surgeries. In addition to that in 2015 I was diagnosed with prostate cancer and had to have it removed.
I have had some chronic stress in my life. Even my doctors feel that all the trauma from the car wreck and the surgeries played a big part in turning on the PsA.
Also, I would not consider fibro rare on any level. In 5 minutes I can call at least 15 people I know that have it bad, and they are not past clients of mine.
I’ve read a bunch about fibromyalgia in the past, mostly about the diagnosis and treatment. I just took a look here http://www.fmaware.org/ because I was looking for some statistics. Interestingly, while I already knew that it could be triggered by trauma, and up to 90% of people with fibromyalgia are women, there were still some interesting points. One was that it seems to run in families. Of course, that makes me start thinking whether it’s genetic in nature, or there’s some other association happening. Anyway, I thought I would share this if anyone wanted to look at a source that addresses fibromyalgia.
I have a family member with severe fibro who has made incredible strides in recent years. She’s an exercise freak now and exercise has definitely been part of her strategy for getting her life back. How she went from being barely able to walk to doing push-ups (and much more besides) is beyond me, though I do know that she is extremely strong-willed.
Aerobic exercise can, I guess, be even more of a challenge with PsA. I don’t have FMS but aerobic exercise really helps me. I’ve always appreciated the impact on my mood and energy levels. Fast-walking I can do (most of the time), running’s not really a great idea for me personally. Swimming doesn’t count, or so I hear(?).
Anyone got any other suggestions for aerobic exercise that might help us all, with or without fibro?
i just started typing and went off… apologies. some times i just feel like a good old talk session… its a long one. love to all.
I also understand mostly women get fibro. for me I think the personality and propensity to get fibro was always there… I have always been a thinker and a worrier. an obsessor. when im stressed about something it circles and circles and i think and think and get amped up.
In my case i already had a pain condition from an early age i was not aware was a pain condition back then, only now when i think back i kinda always had Fibro but in an un triggered state. it was later major stresses that triggered it fully. agree with you fully @tamac
so i was a person who went to the physio a lot with back issues. they never found anything and always told me this and that. making it up i think now.
anyway my back issues went away for years…
but i was someone who checked in to the hospitol a couple of times in my younger years with tummy pain. they always found nothing and sent me home and thought i was worried and stressed. and the pain went away
ball pain… ache in my right ball. scans, examinations… never anything.
i had a lot of drug abuse from teens through to mid 20’s. and then i rebuilt my life. i was one of the very few that ever come back from where i was. it took years to fully catch up to my peers and fit in and everything through working hard in jobs etc.
i was prescribed xanax to deal with anxiety was on that for a decade before i got myself off.
then after a massive court battle that was spread out over 4 years which was not fair… at the end (i finally won by the way! yay me) but it was 4 years of pacing around the living room angry, stressed, obsessing, thinking round and round in circles. working myself up… and this was a big mistake, if only i had my time again i wouldnt of let that happen.
Anyway about a week after that business was all over i jogged to the gym at lunch time and wambam… nearly passed out . couldnt breath, couldnt stand up… dizzy spinning, out of breath, feeling of motion falling backward. heart pounding. i didnt know what was going on and it made me freak out. i had to consciously keep breathing to stay awake with massive pain and palpitations down the side of my torso… it was the worlds biggest panic attack.
they scanned my checked me did blood tests,monitored my heart nothing. found absolutely nothing wrong with me.
that panned out over about 24 hours but i was so unwell for days. and in the following weeks i would have constant relapses.
my rumy tells me this was the moment the fibro triggered and that the panic symptom didnt actually go away after a few weeks, my body adjusted to being in that state.
locked in fight or flight mode. then the pain started in the right wrist, then the left a couple weeks later, back, then the knees, ankles a year later… brain fog and stuttering when talking to people.
being in long term high cortisol mode ie long term stress as you put it @tamac . will lead to serious illness.
the body can take some, but the long term impact is where its at.
like soldiers who come back with shell-shock. apparently its a flavour of fibro. they have lived in a stressed out - fight or flight mode state for extended periods witnessing terrible things and the brain just decides it had enough, and interestingly usually after they are through it it begins.
so whatever the reason for your long term high-cortizole mode (as i like to call it), the outcome is the same.
Anxiety and stress are very bad for the brain. and the brains control over the body is very significant. A psyc told me the brain gets sick of constantly thinking all the time and gives you pain just to do something different.
some people go blind from anxiety. they witness something so terrible the brain flicks the switch to the eyes and they can no longer see. Nothing wrong with the eyes, no detectable issues just the brain no longer reads the signals from the eyes. no cure.
very similar to fibro/CS where the brain or the spinal cord has a signal issue giving you error pain.
In any case the day mine hit was the day i had to stop drinking coffee. 1 sip results in panic symptoms, shaking, breath dizzy etc.
most medicines are out. even panadol makes me dizzy.
my sense of smell is extreme… my light sensitivity is extreme. and ofcourse for me this was the same time my scalp and face Ps appeared.
all these symptoms have died off a lot… i drink coffee again now as i have managed to reduce my symptoms of fibro substantially over the 2 years since my diagnoses. that was only 4.5 years after my big panic day when it started.
Coffee was a big mylestone for me. i loved my coffee. and i always knew the day i could drink coffee again i would be well. so i like to delude myself in to beleiving i am well.
So team PSA, all of the above / my history and all my symptoms together are the reasons why my rumy focussed on the fibro… and with tight sore muscles everywhere seemingly putting pressure on joints and tendons an then what appears to be referal pain in the joints amped by the fibro…
with no swellings and no CDR, etc. i cannot really blame the rumy. he actually listened to my entire liufe story and then made his measured assessment.
where as rumy no 1 just went the… you have skin ps and pain… its PSA route.
and then wondered why the Salfafixazane he put me on made me totally trip out.
i do present different to many doctors and physios and podiatrists etc to anyone they have ever seen with psa!
i beleive i have fibro… and i now beleive i have very low involved PsA… likely triggered by the fibro and pain made worse by the fibro. or not, perhaps the psa was always there and so low involved it appears undetectable and my symptoms different, because only the extreme sensitivity from the fibro made me feel the psa so so early.
i dont know, and i suspect ill be guessing for many years to come.
anyway as far as ive come on the mind and body and physical treatments and attitudes ive developed. more to come on that soon @Sybil … i got my life back from being basically disabled and unable to limp very far from the house. and i did it purely with exercise, attitude and relaxation. more to come.
my pain and symptoms … less though it may be. worse lately. were always there in some way at every stage.
i am about to start Methatrexate.
So if i improve more than ive ever improved before on that, i guess that will be a good indication or final proof of the AA disease.