I'm a 48 yr old English teacher on 2nd day of summer break. I wasn't sure this year I'd make it without having to take leave because of EXTREME and intense fatigue that hit me about 3 months ago. I've been dealing w/ issues in joints/tendons off and on for couple decades.
I've always been an athlete but in my early 20 I began to have very sore hands/feet/hips with tingling in hands and feet. I wondering if that was what it was like to be in your 30's -- to have to hobble around a bit in mornings. My gp at the time said not normal -- I was tested for everything under the sun -- lyme, MS, lupus, etc. She gave me antidepressants.
I did have high ANA and she sent me to a rheum who ruled out lupus and said it was a false positive (no inflammation). My sister (2 years younger was diagnosed w/ lupus at 24yr. - she also has psoriasis (since childhood) and Hashimotos). I also tested positive for Epstein Barr and HLN 247 (?) gene -- they tested me for that b/c my father has Reactive (Reiter's).
Ultimately, I wasn't diagnosed w/ anything but did extreme self care and got stronger and better - took a while! I was so weak at the time I could barely lift a pillow. I quit coaching field hockey, quit anything extra, rested my entire summer break, quit all exercise. Tried to eat really clean.
A couple years later I had a new gynecologist w/ secondary license in Integrative Studies (2 yr program that one of my best friends attended as well - friend is a GP in California and has advised me over the years). Told her my history and she did cortisol check and full thyroid panel and diagnosed me w/ subclinical hypothyroid - she seemed to think all my symptoms could be attributed to thyroid, though my numbers weren't too high (maybe 3.0 TSH). I took low dose of synthroid for a while but noticed no difference so stopped after maybe 6 months or year.
She HIGHLY encouraged me to go gluten free -- I researched and switched to paleo/primal eating and felt huge improvement in my health. This was probably 8 years ago or so. She then moved! :-(
I think the thyroid thing was not it but I believe the dietary changes helped me a lot.
I have been very active and feeling quite well the last few years - I do crossfit a few times a week and LOVE it (I do NOT over push myself) and continued to eat well. This school year was very stressful and I began to eat tons of junk- I mean like pop tarts, lots of sugar, just bad. My sleeping and stress and diet were awful. Around Feb my fatigue was so severe that it was all I could do to make it through school dad collapse in bed. Literally. Over my spring break I was sleeping 16 or more hours a day and left house 1x in 10 days to get groceries. I canceled my crossfit membership and went to dr. My blood pressure was very low (in hindsight I think I was dehydrated) but she was alarmed and did bloodwork - all that really came back was low D, low B, lowish iron. She put me on prescription D and sent me to Endo thinking could be thyroid related again. RF was negative and ANA not elevated. No inflammation markers.
Endo said I think you need a rheum. By that time I was very achy and had swollen joint on left toe.I had developed huge red knot on both big toes - bigger and more painful on left. They are much worse some days than others. I've continued to have the achy hands and feet and hips to varying degrees over the years (low back pain off and on as well)- that kicked in again along with these new knots. I thought I had gout but the pain wasn't that intense. Dr. gave me blood test for uric acid and said not gout. Sent me to a rheum who has a very good reputation.
So, 3.5 weeks ago I see the rheum. I think I'm talking to a nurse or PA because he's not the female doc I'm expecting and barely asked me anything and explained nothing. Then he asked if my pharmacy is same and says I'm giving you a 2 week script of steroids and want to see you in 3 weeks. I then realize he's the doc-- crap!. I was with him maybe 15 min - he ordered more labs and X-rays for hands/feet and did a very quick look of my hands and feet and sent me on my way. I was SO disappointed!!! He didn't even give me any instructions on steroids or explain anything. I said "what are you thinking" - he kind of shrugged and said, "um, not sure. we'll see what tests show." Shortest dr. appt ever had.
I spoke to my friend with RA who sees rheum I was supposed to see and my doc friend - both said I need my gp to get me in w/ good rheum or different practice. But I had to see him for follow up. That appt was yesterday.
Meanwhile I spent some time searching online and stumbled on psoriatic arthritis. I thought wow, I have all those symptoms (certainly not severe but for first time everything fit) but no psoriasis - must not be it. Then I remembered my itchy scalp and scalp sores (one of which I've had for YEARS). I itch and pick at them and always thought they didn't heal b/c of my picking at them.
So, at follow up he said all my labs and X-rays normal. He said the big toe is common place for osteo. I said what about my hips, etc. He sort of shrugged. I said, so you're thinking I have osteo. He said yes and looked at me like I was a whiner or hypochondriac. I asked if osteo caused the kind of fatigue I have and he shrugged and said it can. I spoke up more and told him I had HLN gene, had been diagnosed w/ plantar fasciitis in 2011 (tons of foot pain, especially left) and had tendonitis in right elbow and left wrist so bad in last couple years I required PT to heal. I also mentioned that I had about 4 cases of conjunctivitis inexplicably in last few years - I don't even wear eye make up anymore. I then showed him my scalp. I asked about psoriatic arthritis. He said scalp did look like psoriasis and prescribed me something starts with an M. Said nothing about what to expect or side effects - I asked and he nonchalantly said you can't drink alcohol and listed some side effects but said most people have none. I asked if it would help w/ fatigue (which is most debilitating thing for me). Said yes, probably. Meanwhile I read that people need to sleep for a day or two after taking it??? Huh?
So, he's standing to leave and I said, "So are you thinking I have psoriatic arthritis?" He shrugs and grins and says not sure. I said I was tired of telling people I don't know what's wrong w/ me except I feel like sh*t and no I can't do anything social b/c all I have energy to do is lay in my bed or couch. My life is in shambles b/c I'm not adulting at all - cooking, cleaning, doing taxes -- heck I was just going for survival until end of school year. His parting comment was, "Eh, 70% of time we really don't know what it is."
ARGH!!! So, I want to get scalp biopsied to see if it's psoriasis. I want to see a different rheum. I looked him up - he's been in practice ONE year. What's worse is he seemed not to care or take me seriously. And, I cannot see him again. He scheduled me to see him in 3 months and get labs first to check liver.
I don't want to start meds yet.
How in the world does one get a diagnosis?
I know I wrote a book, and I'm sorry I wasn't more concise. But any advice is most welcome!
there is so much here, don't worry about not being concise .... 'stuff' a lot of very testing stuff, didn't exactly happen concisely! The long and winding road is one that many of us will identify with. One thing that jumped out at me was your low thyroid result. I had that too, just before my PsA diagnosis, and one rheumy told me later that autoimmune disease can make thyroid levels dip.
Oddly perhaps, if you do indeed have PsA, your oh so offhand and disinterested rheumy may have actually managed to do the right things for you, albeit in a manner that does not inspire confidence. A short course of steroids to give some relief plus 'test' whether your inflammation levels will respond followed by Methotrexate (if that is what 'M' turns out to be) is the fairly standard first line of attack for PsA. I can well understand why you want a different rheumy though. Can you check what 'M' is?
People have very different experiences of Methotrexate. It has helped me a lot over the years and I don't get side effects from it. Drinking plenty of water is essential, that really helps prevent some side effects. Were you also prescribed Folic Acid tablets? They are usually taken to offset some of the possible unwanted effects.
Many, many of us .... most of us I think, have struggled with fatigue. For me, Methotrexate helped, though it takes a while to 'kick in', at least 6 weeks I'd say. But many of us have found that treatment reduces or even banishes fatigue. If it's PsA that you have you may, finally, be on a much more positive path than those dismal rheumy appointments would suggest. And if you can find a more proactive rheumy with the people skills to inspire your confidence that would be a great move.
Meanwhile, hang on in there, hard as it is. It's sooooo hard to believe that things can and do improve, especially when poleaxed by fatigue, but they really can, they often do.
If the steroids worked, it implies that it's inflammatory in nature. It will take time for methotrexate to work. It sounds like you may be okay seeing this guy until you can get in with someone who has a bedside manner to speak of. In the meantime, the treatment for autoimmune diseases that involve arthritis are frequently the same to start off with, so you are actually going in the right direction.
In terms of testing, don't hang too much on bloodwork that may not show much of anything. People (including myself) can have completely normal looking bloodwork yet be diagnosed.
Thank you so much for the thoughtful reply. Yes, in a round about way I do feel like I'm on to something (finally), and the prednisone did entirely remove pain in feet, hands, hips - by about day 3 I could go right down by steep staircase in the morning without holding the railing and kind of going step by step. I did two weeks and I assume it was pretty low dose - 3 pills for a week, then 2 pills. A couple days after finishing, the pain was back though. He did not tell me if that is normal or not when I told him. ??
I'm 99% sure the script is for Methotrexate-- I haven't picked it up yet.
I feel like I should get a dermatologist to look at my scalp first to see if I actually have psoriasis. I'm wondering if that would help me get a diagnosis. He told me the meds would help w/ joints, fatigue, and clear my scalp sores. He said, "That does look like psoriasis" but I'm not sure - he is one year in practice and so nonchalant and has told me nothing unless I prompt with a specific question
I've been scratching at the sores for years but don't know what they look like. However, I know they are way smaller and I don't think they look anything like the pics on internet when I search scalp psoriasis. So I want to know before I switch to another rheum (which I suspect could take a couple of months). Surely no one wants to get diagnosed w/ a chronic illness, yet I have tired of feeling like crap for last 20 yrs. w/ no way to explain it to myself or others (let alone treat it).
He did prescribe folic acid as well and chuckled when I said is that vit B.
Thank you for the encouragement and support! It's a lot to take in, but I'm so ready to feel better.
p.s. It's very encouraging to hear that you've done so well on the medicine without adverse effects. That is relieving. I was reading around on the forum this weekend and saw many people say they took it on a Friday because they required a day or two of rest after taking it. That sounded pretty miserable as did nausea and liver problems. Thanks.
Sybil said:
Hi Claire,
there is so much here, don't worry about not being concise .... 'stuff' a lot of very testing stuff, didn't exactly happen concisely! The long and winding road is one that many of us will identify with. One thing that jumped out at me was your low thyroid result. I had that too, just before my PsA diagnosis, and one rheumy told me later that autoimmune disease can make thyroid levels dip.
Oddly perhaps, if you do indeed have PsA, your oh so offhand and disinterested rheumy may have actually managed to do the right things for you, albeit in a manner that does not inspire confidence. A short course of steroids to give some relief plus 'test' whether your inflammation levels will respond followed by Methotrexate (if that is what 'M' turns out to be) is the fairly standard first line of attack for PsA. I can well understand why you want a different rheumy though. Can you check what 'M' is?
People have very different experiences of Methotrexate. It has helped me a lot over the years and I don't get side effects from it. Drinking plenty of water is essential, that really helps prevent some side effects. Were you also prescribed Folic Acid tablets? They are usually taken to offset some of the possible unwanted effects.
Many, many of us .... most of us I think, have struggled with fatigue. For me, Methotrexate helped, though it takes a while to 'kick in', at least 6 weeks I'd say. But many of us have found that treatment reduces or even banishes fatigue. If it's PsA that you have you may, finally, be on a much more positive path than those dismal rheumy appointments would suggest. And if you can find a more proactive rheumy with the people skills to inspire your confidence that would be a great move.
Meanwhile, hang on in there, hard as it is. It's sooooo hard to believe that things can and do improve, especially when poleaxed by fatigue, but they really can, they often do.
Thank you, Stoney! I have a follow up with him again in 3 months -- he told me the meds take 2 months to work. I appreciate the comment about the normal labs- the first thing he said at my follow up yesterday was well, all your labs are normal... then he went in direction of osteo. He did not explain that having pain relief on steroids meant there's inflammation despite none showing on labs. I'm glad I had done some reading about psoriatic or I wouldn't have said anything after he indicated osteo, but by the time I told him about the plantar fasciitis, tendonitis, conjunctivitis, and showed him my scalp, he prescribed the Methotrexate.
I do wonder if whatever sores on my scalp are not psoriasis if I do have psoriatic arthritis - and how will and know and get diagnosed - ever w/ anything. Trying not to get hung up on that but somehow knowing seems big to me.
I hope to get in with a different rheum when I go for the 3 month check. My plan is to start the meds after seeing a derm to look at and I guess biopsy my scalp. I appreciate your help!
Stoney said:
If the steroids worked, it implies that it's inflammatory in nature. It will take time for methotrexate to work. It sounds like you may be okay seeing this guy until you can get in with someone who has a bedside manner to speak of. In the meantime, the treatment for autoimmune diseases that involve arthritis are frequently the same to start off with, so you are actually going in the right direction.
In terms of testing, don't hang too much on bloodwork that may not show much of anything. People (including myself) can have completely normal looking bloodwork yet be diagnosed.
Claire, if it weren't late, I'd write you a piece of non-fiction about my feeling like a bag of dirt (and teaching at the same time) for twenty years, and being blown off by doctors who really believed I was just a middle aged hypochondriac female. But I can't stay, need to go to bed! Click here and read my profile!
Your plan to see a derm is excellent. How are your nails, by the way? And should the derm say "yes, you have psoriasis", cut to the chase and ask her for a recommendation for a rheum.
Thank you, Seenie! Yes, get your rest -- so crucial! I'm woefully under-rested and am making sleep/recovery/self-care a priority this summer. Next year will be year 20 for me - English teacher.
My nails look fine to me. My doc friend asked me that too. They do have some light ridging but no pitting, and the ridges seem to be vertical, actually. Thank you for the response, and one day I'd love to hear your whole story. I'm off to read your profile now.
C. Seenie said:
Claire, if it weren't late, I'd write you a piece of non-fiction about my feeling like a bag of dirt (and teaching at the same time) for twenty years, and being blown off by doctors who really believed I was just a middle aged hypochondriac female. But I can't stay, need to go to bed! Click here and read my profile!
Your plan to see a derm is excellent. How are your nails, by the way? And should the derm say "yes, you have psoriasis", cut to the chase and ask her for a recommendation for a rheum.
Methotrexate can cause tiredness and nausea. Some can't tolerate it, others find ways around those side effects. But I think any internet source is going to make bad or annoying experiences seem a lot more widespread than they probably are because those of us who just pop the pills without problems don't really have any reason to mention it.
I did have raised ALT (a liver enzyme) for ages. But as I really seem to need Methotrexate, my rheumy sent me for a liver scan to see whether there was any cause for concern & to my delight my liver turned out to be just fine. I'd been taking Mtx, mostly at maximum or near to maximum dose, for over 3 years by that time. He also suggested we up the Folic Acid to 5mg 6 days a week rather than just one day, in case that helped, and actually my ALT did return to normal levels after a few weeks of that approach. May have been coincidence, but I think it's worth mentioning.
Claire said:
p.s. It's very encouraging to hear that you've done so well on the medicine without adverse effects. That is relieving. I was reading around on the forum this weekend and saw many people say they took it on a Friday because they required a day or two of rest after taking it. That sounded pretty miserable as did nausea and liver problems. Thanks.
I read a while ago a comment by a highly respected doctor that the practice of medicine is more an art than a science. Developing people skills most definitely is!!!
The comment stuck in my mind but I didn't really think about it until recently and when applied to the often long and winding road we take to diagnosis it begins to make alot of sense. I've had skin problems since childhood and seen several dermatologists, including one who looked at my thumb nail and prescribed a combined fungal/mild steroid cream. Did any one of them diagnose psoriasis? No .... allergies, eczema, dermatitis even possible ringworm at one point (the scrape for that was negative)!
Right up until the last few weeks I have never had 'classic' nail pitting but then I noticed it developing on one nail. But my two thumb nails are now trashed, badly disfigured. Lots of vertical ridging on all nails. And I've had splinter haemorrhages for decades. And my toe nails are now so fragile they shatter.
The day of my first rheumy appointment there was lots of headscratching going on (him not me, haha) because I hurt, had very visible inflammation on ultrasounds of my feet, mild swellings, normal bloods. We'd run through family histories for RA, Crohns and a few other autoimmune issues. He asked about psoriasis, I said no-one but I've always had skin problems. Really he said, have you got any now? So I hauled up my trouser legs to display my knees ... the lightbulb on his head lit ... that is plaque psoriasis, I know what's the matter with you, you have psoriatic arthritis!
So maybe all the stars were in the right alignment that day. Certainly that is the one and only time my psoriasis has ever looked like most of the pictures you see. And I've fooled dermatologists for decades. But with a clear objective in mind I agree if you can get your scalp confirmed by biopsy then all well and good but in the meantime the steroids showed you were responsive and the methotrexate will, hopefully, help whatever diagnosis you end up with.
Art not science. Hmmmmm, I'm beginning to get this. You need docs with the science behind them and the art to apply it and draw the dots together into a coherent picture, even if what is before them to start with is a jumble.
Good luck, I feel you are travelling the right road.
Hi Claire, WOW, some of your symptoms are a dead ringer for mine. Ultimately I was seropositive for RA but display mostly like PsA, later on my body "added" Crohn's to the mix. I too had feet that have hurt since I was in my 20s, I have always worked and in college I was on my feet all day. I always wondered why other people my age didn't complain about their feet all the time. I also had the dry skin/head sores that would sometimes get better than others but I couldn't seem to leave them alone. I'm 40 now, been diagnosed for 5 years but probably sick for 10 years working up to it for a LONG time. I had a rheumy treat me like a hypo, it happens. Keep advocating for yourself. I have flares still and it never really goes away for me, but I'm managing a full time job, keeping up my house and enjoying my hobbies while taking methotrexate and Remicade (plus balsalazide for crohn's). My skin stays in remission and most of the time my feet don't hurt as long as I wear comfortable shoes (no stiletto gladiator's for me, lol).
I have also gone gluten free since an environmental medicine doctor said I was making both antibodies to gluten. I just finished a book called Brain Maker by the same author of Grain Brain and he posits that gluten is one of the worst foods for inflammation. You might try giving it up again if you can.