I was given the fibromyalgia diagnosis after I was diagnosed with PsA by my first rheumy. My arthritis has never been properly treated since diagnosis so I’m not very accepting of the fibro dx. It’s not that I believe that I do not have fibro but rather that the majority of my symptoms are from poorly controlled PsA. My original rheumy just blamed all my symptoms on fibro and would never consider that I would benefit greatly from a biologic.
At the first appt. with my new rheumy, she determined that I definitely needed to be on a biologic and that she would hold off on the fibro dx and treatment until we have the PsA under control. She took one look and my swollen hands, wrist and feet and decided on the biologic. (My previous rheumy did not think my obviously swollen hands and feet were caused by PsA. He said that I had too much wide spread pain for the cause to be PsA!) I have a lot of tender points but these points are nearby or over my joints or insertion points. I do suffer from crushing fatigue, unrefreshed sleep, and brain fog but all these symptoms worsen when I’m in a PsA flare. So, it will be interesting to see if Humira is able to alleviate these symptoms.
At this point, I’m willing to try any treatment that works and that does not cause more brain fog.
For those with the additional dx of fibro, at what point did your doc decide that the symptoms were from fibro?
My PsA dx and commencement of treatment was in 2012, the last two years on an effective biologic. My FMS dx this week comes four years to the month after the PsA dx and is the result of none of my joints showing signs of active inflammation or swelling (suggesting the bio is doing just what it's intended to do) but I am still reporting widespread pain (alot of it functional pain) and tenderness as well as poor sleep, tiredness and fatigue and just a horrible feeling of unwell-ness.
My rheumy who is one of/the UK's leading PsA specialist said about 30% of PsA patients will have/develop secondary fibro and that often symptoms aren't evident until, or seem to worsen when, the PsA is brought under control. The book I mention also says secondary FMS is not uncommon with inflammatory arthritis.
In spite of the periodic episodes of brain fog, now that I'm looking at how I feel from a different standpoint, this is subtly different. So yes, I think this has been unmasked by control of my PsA.
I'd rather not have FMS but I'm happier knowing why I still don't feel so good. Knowledge is power and it gives me something to work with.
My feeling is that so long as you have a rheumy who will work on your PsA first and foremost I'd say don't worry about a FMS dx down the road. You need effective treatment to stop damage to your body from PsA. FMS might hurt and make you feel like rubbish but it's not harming you. As you've found, aberry, alot of potential treatment and damage prevention time is wasted if you've got a doctor whose mind is all made up and set in FMS concrete at the outset.
aberry22 said:
For those with the additional dx of fibro, at what point did your doc decide that the symptoms were from fibro?
Hi Jules, your diagnosis raises a whole load of questions for me, I'd guess that many of them are the same ones that are going through your mind. I'd be reading up nineteen to the dozen too. Fibro (and its connection with other diseases) mystifies me still and I suppose it all boils down to 'what the heck is it? How and why does it come about?' I don't know why knowledge and understanding helps, but for some of us that certainly seems to be the case. Wishing you all the best, I hated hearing that you've got this dx but I'm glad it you're starting to get to grips with it. Has anything been suggested or started in terms of treatment?
Just regular nightly amitriptylene for now. The last few years I've dipped in/out of it whenever I've needed a good nights sleep but it's back on the daily schedule. I can only tolerate 10mg before becoming a space cadet but my rheumy did suggest, ideally, I need to be taking a higher dose. I'm going to stick with the 10mg until I feel it's eased off on effectiveness then try to titrate myself up 15mg - 20mg. My last few nights sleep have been better but it's long term use that may help with pain.
Based on what I've been reading I need to up the exercise, preferably my hydro, so I'm looking for a new place I can go to do that. Massage seems to help alot of people too so I'm going to book to see a myofascial release practitioner. Warm baths too ... this sounds the easiest to do but I can't get in/out the bath (thanks to PsA) so I need to investigate ways to make this do-able.
At this point, other than the ami, I want to try non-pharmacological management. So long as I can get some relief - and I think being less tired will help enormously - I accept that there will be a level of pain that I will simply have to live with forever.
My mantra at the moment is "I can do this". I fought to get the right and effective treatment for my PsA so I can ride this horse too.
Thank you everyone for your support ... you're all the greatest :-)
Sybil said:
Hi Jules, your diagnosis raises a whole load of questions for me, I'd guess that many of them are the same ones that are going through your mind. I'd be reading up nineteen to the dozen too. Fibro (and its connection with other diseases) mystifies me still and I suppose it all boils down to 'what the heck is it? How and why does it come about?' I don't know why knowledge and understanding helps, but for some of us that certainly seems to be the case. Wishing you all the best, I hated hearing that you've got this dx but I'm glad it you're starting to get to grips with it. Has anything been suggested or started in terms of treatment?
I was just doing a search about the very question asked by @Stoney in the opening post - and also because of chest wall ache/pain. And also because of the question she asks about meds.
I was wondering a few weeks ago if the biologic I was on was no longer working. I had pain where I hadn’t had it before - most notably my chest. I also had knee pain at the same time, but I’m pretty certain that was due to going away for a week. The knee pain has got better, but the chest/back pain seems a constant. And I’ve only just realised that I was writing here a couple of years ago about pain under my arm, and how it felt the ribs there were bruised - and so I now think that what I was experiencing then is what I’m also experiencing around my chest and back now, but just in a different spot.
So, here’s my position. The biologic is clearly still working on my arthritis in my knees and ankles and various other places. But it’s not having an effect on my chest aches and a couple of other issues that have become bothersome. If it’s working in some areas so well (the areas where my PsA is at its most severe traditionally), why wouldn’t it be effective elsewhere…unless the pain elsewhere is caused by something else?
Does that make sense to anyone other than me??
It makes a lot of sense darinfan. However, it has always seemed to me that my PsA rumbles on despite the biologic ‘officially’ working well. After all, biologics control this progressive disease, they don’t stop it. Intense pain in joints is long gone, for me, but in the last year or so I’ve had more extensive, achey pain, including in muscles.
I assume that my pain is most likely due to damage of various kinds that is PsA-related, everything from ‘a bit of OA’ through to more serious erosions is possible. In my case there’s no evidence of severe damage. There is also enthesitis which I think is less easily controlled by the bios.
I’ve considered fibro too. Though recently I’ve been told I have Ehlers Danlos syndrome. I say ‘told’ rather than diagnosed 'cos it resulted from attending an appointment with my son at which his rheumy examined me too. Fair enough as it’s usually an inherited condition, but rather an odd thing to happen! We’re awaiting gene testing to determine which type.
Anyway, from what I gather Ehlers Danlos impacts joints and a lot of other bits and pieces. And with advancing age, or if you’re more sedentary than is ideal, then the birds come home to roost as it were. Same for PsA I’d imagine … if we have the audacity to get older, or to be less mobile, it hurts more and more damage may occur. I can’t do anything about ageing, but I can exercise and the right kind of regular exercise continues to help considerably.
I just talked to my Rheumy about this three weeks ago. She said that my chest aches and pains around my ribs and shoulder were not classical fibromyalgia, but that it’s a kind of secondary fibromyalgia that develops with PsA. Hard to explain, but she said it has to do with all the different pains that my brain is processing at any given time and it tends to become more sensitive to any kind of pressure - so things that normally wouldn’t hurt, cause my nerves to fire and I end up with pain. It made sense at the time … I feel like I’m not quite explaining it right here, though.
That’s interesting. It actually makes perfectly good sense to me.
Makes sense to me too @Stoney & @Beeham. Wish such things didn’t happen, but sounds very plausible. I’ve always had a high pain threshold, but have started to think maybe years of suppressing ‘low level’ pain may have affected my brain chemistry (or something!).
It’s difficult for us as non-medical people (in the main) to process some of this, I think. On the one hand, I can understand what Beeham is saying, but the other part of me is thinking that costochondritis (sp?) is caused by inflammation of the rib area and so surely the pain is “real” rather than exaggerated by the brain. I don’t know. And PsA really and truly screws with my head sometimes - and I think that’s often worse than the actual symptoms. I like to make sense of things, and I can’t. And I hate that.
Tonight I got in a friend’s car and nearly went through the (sun)roof when the seat belt pressed against my shirt button and therefore pressed on to my breast bone. Part of that, bizarrely, at least gives me reassurance that this pain (whatever it is) is definitely coming from the ribs and not any of the organs or tubes underneath! And I think that’s partly what I need sometimes - proof that something is a PsA-related thing and not anything “worse.”
@Beeham @Stoney @Sybil @darinfan I was diagnosed with fibromyalgia about 30 years (in the 80s) before I got a PsA diagnosis. Beeham, you’ve described fibro exactly as the rheumatologist did then to me. He just said that he can press on the same spots on his body and not feel pain, while when he presses with the same pressure on my body, I feel pain.
Amitriptyline and exercise were never adequate for this body and I didn’t get another referral to a rheumatologist for decades. When I was finally diagnosed with PsA (2012), the doctor told me I could drop the fibro diagnosis. PsA was enough to explain the pain.
What’s crazy is this round I thought it was costochindritis - tightness in the shoulder area, stabbing pains in my ribs - but my rheumy sent me to the ER and turned out it was pneumonia in two lobes with no symptoms except the chest pain that was a little worse than I’m used to.
That’s enough to make me completely second guess it when I attribute chest pain to fibro or costochindritis. I’d been having those pains for two months before I went in and thought it was the PsA. Now I wonder if it was walking pneumonia all that time that finally just got bad enough for me to really take notice.
I ended up at the walk-in centre today, just to get everything checked out. The sensation of not being able to breathe properly was the thing that prompted me in the end. I didn’t want to assume it was “just” PsA. But chest was clear according to the doctor, and she seemed to think the breathing issues were basically a result of me thinking so much about the pain in my chest that it was almost by association.
Oddly, we got chatting about what I (and doctors) have always assumed were esophagus spasms that I have had since I was about 14 (so thirty years). She says she wouldn’t be surprised if it was actually costo all along. I told her the first time it happened it lasted about two days, but that they now last three or four hours normally, but they have become more frequent. She says it’s difficult to tell for sure, as the symptoms aren’t all that different, but she “wouldn’t be surprised.” In all honesty, I wouldn’t be either.
At the moment, I feel a mess. I have the very real costo, the not so real breathing issue that comes with it, and the reoccurence of reflux that I always fear is damaging my esophagus - and so every time I eat I sit there waiting for pain or for a bit of food to get stuck, which happens occasionally anyway as I’m a gannet and eat my food too quick!
Anxiety/bipolar is shooting through the roof at the moment. Part of me thinks I should go to the GP and ask specifically for a camera to check the esophagus once and for all - but the other part of me doesn’t think it can cope with the hassle. But I think my brain is only dwelling on that in the first place because the costo has me thinking about that are of my body so much. I’m just hoping everything will run its course in the coming weeks and settle down again. What a mess!!
I’m sorry your anxiety is so high, it’s understandable. You do so well dealing with bipolar and PsA, the two must be difficult bedfellows.
Can you do stairs? I can be lolling on the sofa and my breathing seems tight due to costo, but I climb the stairs or walk to the shop as briskly as I can and then the ease of breathing reassures me. Is there any way you can test yourself like that? How about singing? I’d imagine that’s a great way to prove to yourself that actually breathing is just fine, when anxiety strikes.
Look for signs of health … just those. You wolf down your food? Not recommended I guess, but tell yourself that’s a sign of a vigorous person, not someone who is on their last legs! (And then, um, maybe slow it down lol!)
Sounds like you’re all right darinfan. And the walk-in centre seems to have been quite helpful. I hope things settle down for you soon.
Hey Darinfan, something that has worked for me in the last few months to separate out the costo, anxiety, and feeling like I couldn’t breathe was to focus on breathing ONLY with my lower belly, so my ribs moved very little. Focusing on moving the diaphragm down, without moving the chest or ribs outwards, then the diaphragm back up again.
Allowed me to feel like I was taking a deep breath, even with significant crushing type pressure on my chest, so I could separate the two sensations.
Thanks. It’s a very weird thing because it’s the sensation of being breathless but not actually being breathless or even breathing quicker. Nothing’s normal with PsA. I walked to the docs yesterday and was fine with breathing. Was also fine singing tonight. But sit in the chair and watch a movie…
I think much of the problem now is that I get angry with myself for the hypochondria, and frustrated as I can’t shrug it off. That then gets you uptight, leading to more panic in the end!
Personally, I was diagnosed with fibromyalgia 6 years before my PsA diagnosis.
Now, I’m not so sure which came first, the chicken or the egg, but I’m positive of my fibromyalgia diagnosis.
The pain is just different, in my opinion, even though there are definitely overlapping areas.
I used to describe it to my husband like this, “on a good day it feels like I’ve been to the gym for the very first time and worked out for hours, every muscle is overworked and hurts bad. On a bad day, add to that being hit by a bus, and now EVERYTHING hurts from the top of my scull to the bottom of my feet, even to the touch!”
I do experience the joint pain and enthesitis for sure, but sometimes I can tell the difference, and other times not.
Also, the tender points are very distinguishable from any other parts of the body. It’s one certain place(point) that if you gently poke gives a deep aching sharp pain that lingers. I’m positive for 15 out of 18.
It honestly sucks!!!
Having both conditions/diseases/whatever and currently working on a peripheral neuropathy diagnosis has been hard, but I try to keep positive, because life has to go on.
I have to work fulltime for now to support my family, I work as a chef so on my feet all day and running around. Each day, my body takes a beating, but I have to go home and be perky and cheerful to take care of my precious autistic little boy, and take him to therapy and extracurricular activities, to give him all the tools to lead a happy, successful and fulfilling life. I also have two children in college, and lots of payments that make me have to keep working fulltime.
I got a little whinythere in the end of my post, sorry about that! I’m feeling down these days.
Best to all of you!