Sorry Jorge, I didn’t realise what GAD was.
1 Like
Fibro IS a thing and I think some of the PsA symptoms are like fibro…my skin on my thighs and arms would HURT before I went on Enbrel. I was never sure if that was some weird symptom like psoriasis under my skin that hadn’t erupted or what? I had other sensitive spots that are typically listed as fibro symptoms.Once-in-awhile my scalp will be really sensitive–could that be fibro? Why does your doctor say it’s fibro? Do you have psoriasis? Do you have pitted or deformed nails? I don’t get why he won’t make the diagnosis of PsA!
Anyway, if it IS fibro, the Cymbalta my husband was just put on also apparently works for fibro–at least I read that on the medication insert. Wouldn’t hurt to ask your doctor about that?
1 Like
I’ve had this kind of hurting under the skin too. Like nerve endings hurting.
Fibromyalgia IS now recognised to be a physical thing, and the most recent studies are pretty clear that it’s got an inflammatory link. But…
My Rheumy could never ‘see’ joint inflammation in me. It didn’t even show up in MRIs. It was right there though in the wedding ring that no longer fit, the bra strap that would leave an indent in my shoulder for ten hours after removal, oh, and how my feet and legs went numb six weeks in fom onset due to inflammatory compression on my spinal cord. My CRP and ESR have always been exemplary compared to ‘normal population’ in Aus, because our measures are acute disease. My baseline has always been low - and I don’t have an in between - either I’m normal, or in crisis. At the end of the day, our immune systems don’t operate like the average. And to some degree, most of us normalise that and operate through it.
I still remember one instance feeling like death - going to the doc and telling him I was not ok. It wasn’t dissimilar to the worst I have felt with PSA, but I knew it was different. I’d just come back from West Africa, and though I was telling him I wasn’t ok, he said I looked bright and was coping, so it couldn’t be that bad. He sent me for blood tests. The next day I still felt lousy, had a temp of 35.5C(yes, you read that right), down from 38C, but I didn’t feel as bad as my worst day with PSA, so I went to work. About 3pm next day, the surgery calls to say I HAVE to go in that afternoon. Well, work was 1.5 hours from the surgery, and I’d coped fine that day, so I talked them down to the next morning. Turned out they were panicked because of a CRP of 79, and a positive on dengue virus (the temp, the blood results, and previous dengue exposure, meant that dengue haemorraghic was the most obvious explanation). With PSA, it’s never gone above 8. Even when I had a temp of 39.4, pnemonitis, and seizures, I got the grand total of 26 on my CRP, and a normal WBC. I won’t even go into the details of when I was 16 and was sick for months, and never had a bad blood test until the day I was actually septic (apparently I looked too healthy that day too, despite the surgeon telling my parents there was a real chance I may not survive only 12 hours later - glad I didn’t listen to that conversation!)…
Moral of the very long story? There are many of us with ‘normal’ blood tests in comparison to the normal population. Problem is, we are not the normal population. Many of us don’t have visible swelling (or only for a little while, and it doesn’t perform when the Rhuemy is watching). On top of that, the new research is implicating inflammation in fibro as well - so as a start point, if you have the chance to treat the inflammation, and see how it goes, with risk of side effects that are acceptable to you, then why wouldn’t you?
Wow… this is what scares me… Whatever my symptoms no one can find anything ever… The times a very happy doctors assistant called me to tell me I was 100% healthy…
Hi Cynthia - i am sorry! It is not meant to scare anyone. Just to provide some encouragement that if you believe there is a real issue, educate yourself and be your own best advocate. After all, I’m still well and truly alive, and just a whisker off true remission 
.
1 Like
And what I should also add… though if they wanted to take my Humira off me, they would have to pry it out of my cold, dead hands, the same can be said for both my ever-supportive psychologist, and my meditation practice. There is a lot to be said for treating EVERY aspect of this, and other diseases.,
1 Like
You didn’t scare me in that sense… more like that is what I’m worried about… but i feel like a hypochondriac… like I must be over reacting if they can’t find anything wrong…
When I first got my diagnosis the doc did the requisite blood work. He called with the results because there were, well, no results. He called me to let me know that just because my blood work showed a normal sed rate and no inflammatory markers did not mean that I was not ill nor that he would change his diagnosis. He was concerned that I would feel like I was crazy if there was nothing to see from my blood work so called to reassure me that for me it was a poor indicator of my disease. I’ve since learned to trust my gut. Oh and I take photos of body parts that swell or bruise unexpectedly between appointments. This helps my doctor know what he doesn’t see.
1 Like
Hi, I am sorry for my absence in the discussion, but my father was hospitalized Saturday morning due to pneumonia. He is recovering.
Those with Sjogren’s may present neuropathy. Grandma_J, I remember you said you have dry eyes and month, maybe it is secondary Sjogre’s.
I do not have psoriasis, only a few spots of dermatitis, but my father and grandfather have bad psoriatic toenails. My nails are fine.
Let me explain why the second rheumy thinks it is fibro. To the first rheumy I only explained what I was felling since November 2016. After this appointment, I remembered the 2011-2013 episode when I presented muscle fasciculation, tingling, tremor, plantar fasciitis, brain fog, pain in some joints (asymmetrical) such as wrist, knee, back, elbow… An I also remember that the reason I had chronic sinusitis in 2008-2012 was because of dry nostrils (now I have dry month). So, I figure it was all connected. When I talked to the second rheumy, I told him the whole story, and before I reached the 2016 events, he was sure it was fibromyalgia + Generalized Anxiety Syndrome. When he saw the negative blood tests, the MRIs showing with no inflammation in hands and sacroiliacs joints and I had no swelling, it only confirmed his hypothesis.
Thanks for this input. I am still taking the meds. The fibro diagnostic makes sense but I am not convinced that it is not PsA because of the tender joints in hands and feet. Moreover I had some low-grade fevers, I do not have muscle pain, am a little sore at the base of the spine…
The second rheumy said I was a little hypochondriac… At the end, fibromyalgia is an ‘exclusion diagnosis’. If it can’t be explained, then you are in this diagnostic-limbo called fibromyalgia.
At Feb 14th my medication was changed. Melocixan was increased from 10mg to 2x8mg and cyclobenzaprine 5mg was introduced (muscle relaxant). The truth is, I am feeling better! Pain levels dropped (but still dry moth). If the cyclobenzaprine did the trick, maybe it is fibro. If the NSAID change did the trick, it is inflammatory. And know I have a third hypothesis: Sicca syndrome.
According to “Joint Pain and Sjögren’s Syndrome” by Alan N. Baer, manifestations of Sicca syndrome are: 1) Nodal osteoarthritis with chronic inflammation of salivary glands, 2) Dry eye and mouth syndrome, 3) Sicca, weakness, and polyalgia syndrome, 4) no evidence of autoimmune process, such as SSA and SSB antibodies.
This also scares me a little… the way you tell the story changes the diagnosis… I’m not good at telling stories and forget symptoms as soon as they stop bothering me…
I’m wondering if they aren’t all just the same disease… or if the criteria to keep them apart isn’t accurate… and that’s why there is such an overlap in how well the meds work…
Cynthia you don’t need a story, you just need to be your own advocate. I don’t know if you have a little sister but if you do have one, or if you did, and she was going through what you’re going through, I bet you’d have a really good angle on exactly what needed to be communicated to the doctor.
I’ve learned that when it comes to rheumatology appointments I have to think of myself objectively. The key thing is to get the facts across, and it usually is just the main symptoms and issues because UK appointments are like speed dating. I prepare for these occasions as if my life depended on it, which in a way it does, the quality of my life anyway.
1 Like
I also make sure to mention symptoms that may or may not be related. It’s up to the doctor to decide whether or not the symptoms are related. So heart palpitations get mentioned to the rheumatologist as well as neurological stuff. The truth is that most of my symptoms are indeed related.
I don’t know what the most important symptoms are… The pain in me tendons hurts the most… but I think the stumach ache which has been always the for a while now but barely noticeable under the rest might be more important… I only just realised it was there but I’ve had it for maybe months… By notice I mean registered that it was constant and always there instead of thinking it just happened and it must be something I ate last night…
That’s what I mean… I have a lot of things like that… And then I get in with the doctor with my very long list and he doesn’t want to look at it… So I have to read it out which means I’ll leave out half… Because it feels stupid to say…
I’m sorry I didn’t mean to take over the topic…
Cynthia, I agree with Sybil, you have to be prepared for the appointment (speed dating? LOL). I try to keep a diary of my symptoms and I summarize it, along with a list of questions, prior to the appointment.
1 Like
Hi Jorge, I see your rationale, but will ask you to challenge it a little - many with autoimmune inflammatory disorders get very little relief from NSAIDs (for example they help my spine a little, but are truly useless elsewhere - many here don’t even have spine inflammation and the NSAIDs do no more than placebo). Quite frankly, unless you have a radiographically detectible spondlyoarthritis, the chance that the meloxicam is helping more than a little, is pretty slim.
Most of us respond to muscle relaxants with PsA (my personal choice is a hydrotherapy spa in the morning, and white wine in the evening) - because we have chronic tendonitis. So… not a great exclusion technique on whether you have PsA or fibro.
For most people, they really need to try a number of DMARDS before excluding PsA as the key problem. This would seem likely to be your case given your history (unless, of course, you manage to feel great on something that wouldn’t normally affect PsA).
I think the impact of GAD can be enormous - and probably my disease would (actually does) exacerbate within days without the strategies I use to manage it. The best I have ever seen was a program for kids - name it - tame it - reframe it. Meditation and Yoga have become an irreplaceable part of my life. Having said that, I had some amazingly challenging life experiences prior to PsA without ever feeling anxious - so for me, I see it as a part and parcel of the new, PsA me.
This is a really, reaallly long way of saying that I think all the things you are doing are essential - but please don’t exclude an inflammatory autoimmune disorder on any of those basis.
If you want a fun weekend (and have no contraindications) talk to your PCP about a 5 day course of medium dose steroids (like 25mg per day). If there is a very direct inflammatory link, like in PsA, there is a very big chance you will feel like Superman for the weekend. Results have generally not been good for Fibro, despite it having an inflammatory link (possibly a different mechanism).
But, please don’t continue on 5mg per day Prednisone, that is seriously the devil’s work! There are some clinical reasons they do this in countries where biologics are not available. But 5mg gives very few people significant symptom control (but side effects over the long term can be big), and if it’s PsA, low dose Prednidone is vastly inferior to true DMARDS.
1 Like
I’ve been using a pain diary app, one of those that allows you to color in the region that hurts most during a day. Been a bit too depressing to do it the past couple of days, with no change, but I need to get back to it. Nice thing about it is that it shows a chart that shows pain over time, so that should be useful come appointment time.
1 Like
As if that’s good news!
1 Like
I totally agree, Jen. Around my neck of the woods, doctors are loathe to do the prednisone trial. I shrieked at my doctor to give me a short course of 20 mg and that I would accept her warnings of the risks. She gave me a week or ten days’ worth. By lunchtime of the first day I knew that my complaints were related to inflammation. After three days, I felt like a new woman. At that point, I quit, not because I didn’t like the new me, but because I didn’t want to invite trouble.
In some countries, like the UK, a dose of injectable long-acting steroid is pretty much standard procedure when you get a diagnosis. I’m guessing that it serves two purposes:
- confirms that inflammation is the problem
- totally impresses the patient with the doctor’s amazing healing powers
Why this is almost never done in The Great White North, I don’t understand. Maybe someone smarter than me does.