I started out with "multiple tendonopathies" - wrists, hands, ankle, sore heels. Aching in hands and feet, especially when tired. It feels like someone slammed them in a car door sometimes. Hip was jammed up with "capsular contraction", fixed with physical therapy (heat treatment and someone pulling on my leg.) I was clenching my jaw so much and had so much referred pain in my head and neck that the dentist asked for the rheumatoid factor test which was positive. The rheumatologist said I didn't have any issues upon reviewing a complete panel, aside from anemia. Eventually I got extremely dry eyes, followed by weird skin rashes that were biopsied as eczema. Blood work was still normal except for the RF. The final straw of being diagnosed with an AI issue was that I thought I tore a rotator cuff because I couldn't sit or stand without shoulder pain and couldn't even get dressed with my right arm. The MRI showed bursitis in 4 places, blood panel showed elevated CRP. I started pred for 3 months followed by plaquenil which did nothing besides make the CRP go away. I started having joint pain all over during this time along with crazy rashes that would appear and disappear within hours, mouth sores and very dry scalp. I started MTX which helped some but my disease was still progressing with bursitis in my feet, all the while my blood work looks "great!" my feet deformed as I watched, sometimes the bursa would pop and that really hurts. I ramped up to 25 mg of MTX and started Humira which worked for a while. After a year, it quit working (this summer) and I got sausage toes and my toenails had grown out hard and curved, and starting to pull away from the nail bed. I doubled up on Humira weekly and that didn't make a difference, At this point the dermatologist, podiatrist and rheumatologist decided that I had PsA and not RA, so I began Cimzia in early November. It was working fantastic for 6 weeks until I backed off to the maintenance dose, now the sausage toes are back in the big toes. I will say that the insidious monster of fatigue that I have become so used to has abated on Cimzia, my mind and energy level feel like the old me.
Me in a nutshell: dry eyes, mouth sores, dry scalp, PsA, Raynaud's phenomenon (always had this, just found out what it was called last week!), joint hypermobility, sensitive to barometric pressure. When weather changes, I feel like I've been crushed. I think I have spondylitis in my neck close to my jaw and in my mid-back, but my rheumatologist thinks I don't.
It sounds like PsA to me. You can have it without having plaque psoriaisis. That’s what I have. I get thes small pustules around my joints and I’m definitely sensitive to weather changes and have some eye problems too.
Here are a couple things you might want to try or look into.
I use a topical pain relief cream and that helps when things get bad
try to figure out what is triggering your AI response. Since it can be triggered by what you breathe and/or eat, I started there. For me it was allergies and Crohn’s disease in my gut. I find that taking probiotics daily is almost a miracle for me. It’s like putting good flora in the gut so the bad bacteria can’t get going. Hence my AI system is much more under control.
I also had referred pain that was due to herniated discs in my back and Ankylosing Spondylitis. I had to get shots in my back to get it under control but that helped a lot!
These were/are the issues that I hAve encountered to date and it took a long time to figure them out because multiple things were going on at the same time.
So learn as much as you can about your symptoms, ask questions on here and hopefully you can get these things to a manageable level.
Good luck!
Your symptoms are very similar to mine except I had diagnosed psoriasis since age 13. Once I started to react to my medication I really got scared and turned to alternative medicine. Best decision ever. Following strict diet changes I am completely pain and inflammation free unless I get off course. I did a strict elimination diet getting rid of all inflammatory foods - gluten, citrus, nightshades, soy, dairy, alcohol, caffeine, sugar, peanuts, chocolate, eggs, beef. Within four days I felt better than I had in years. It took three years to get rid of all the inflammation and my diet now stands at gluten and soy free, only high fat dairy occasionally, low carb, no oranges or grapefruit, no fresh tomatoes (only high processed), no pork, very low sugar and low carb, minimally processed foods. I have taken maybe 3 Tylenols in the past 2 1/2 years. This is very individual and journaling everything is a must - time of eating and time of symptoms to make correlations. I realize how diet is just habit as I have transitioned (finally) to the new lifestyle. I can even rock climb now whereas two years ago I couldn't even make a fist. I can also look up as all pain in my cervical spine ceased. Good luck if you try it out. There are a lot of resources on the web.
I went Paleo and have been taking probiotics for a long time. I did notice that the Paleo made me leaner, but no change in symptoms overall. I don't eat a lot of nightshades or much citrus, but I do love green tea. Not sure I can give up caffeine ;)
Interesting that I didn't do so great on paleo either. I don't handle too many eggs or nuts very well, too much of anything really. My system seems to get overwhelmed. I am forever staying gluten free and soy free though. What did work pretty good for me was The Blood Type Diet Arthritis protocol. It eliminates most of the inflammatory foods so for me, it was foolproof. Too hard to stick to though. When I really need to get on track I get it from the library and follow it for a week or so.
It took me over two years to get myself figured out.
Yours sounds a typical case of PsA, and it seems from all the discussions that each treatment method, if it helps, does so for a variable time, and then you have to find another that helps. Have you any family members or forbears affected? It seems very strongly heritable, and to start in short bouts when it begins, often a tendinitis that resolves spontaneously over a few weeks with years til another joint/ tendon affected. The whole thing seems to accelerate with more joints, usually asymmetrically affected a couple of decades on. Then dry eyes and the odd skin plaque near an active joint develop. Crohn’s can begin after this or before, but seems the easiest aspect to get under control with steroids, enbrel etc. I’m lucky in not being too subject to fatigue, and keeping busy helps distract the mind from the discomfort which seems like having a permanent bruise over the affected area, superficial tendons can be calmed down by NSAID gel, or by aspirin if this not helping, but take Omeprazole or similar PPI to protect stomach. Me and my Mum find this better than the many newer ones. We find the eye mists available here in UK in all pharmacies very good to lubricate eyes, you spray them onto closed eyes, especially good to use when wake up. Gentle stretching excercises can help with neck and back pain. Glucosamine 1500mg daily may help too. Soft mattress cover, a selection of different sized /firmness of pillows to support neck knees etc and a sleeping tablet (a must ) help with getting sleep. Do hope you maintain energy level. My Mum found enbrel really good for 18 months then Stelara helped, but not as well.
Yours sounds a typical case of PsA, and it seems from all the discussions that each treatment method, if it helps, does so for a variable time, and then you have to find another that helps. Have you any family members or forbears affected? It seems very strongly heritable, and to start in short bouts when it begins, often a tendinitis that resolves spontaneously over a few weeks with years til another joint/ tendon affected. The whole thing seems to accelerate with more joints, usually asymmetrically affected a couple of decades on. Then dry eyes and the odd skin plaque near an active joint develop. Crohn's can begin after this or before, but seems the easiest aspect to get under control with steroids, enbrel etc. I'm lucky in not being too subject to fatigue, and keeping busy helps distract the mind from the discomfort which seems like having a permanent bruise over the affected area, superficial tendons can be calmed down by NSAID gel, or by aspirin if this not helping, but take Omeprazole or similar PPI to protect stomach. Me and my Mum find this better than the many newer ones. We find the eye mists available here in UK in all pharmacies very good to lubricate eyes, you spray them onto closed eyes, especially good to use when wake up. Gentle stretching excercises can help with neck and back pain. Glucosamine 1500mg daily may help too. Soft mattress cover, a selection of different sized /firmness of pillows to support neck knees etc and a sleeping tablet (a must ) help with getting sleep. Do hope you maintain energy level as it will let you live a more normal life, other biologics may help if available, My Mum found enbrel really good for 18 months then Stelara helped, but not as well.
I did get a Tempurpedic matress and that helps a lot, I take a sleeping pill at night along with a clonazepam to prevent jaw clenching, it also helps me sleep. No one in my family has psoriasis or any AI condition, although my grandmother who is 93 said her father had to stop working in his 50s because of "rheumatism". He was an immigrant and she can't remember exactly what his symptoms were aside from debilitating pain, he apparently never went to the doctor for a diagnosis. That's the closest relative I have with anything similar. I did get a tick borne illness when I was a kid, I've often wondered if that's what triggered my genes to kick in with PsA.
I think my doctor initially thought that I might have Sjogren's but 6 months on Plaquenil had no effect on my symptoms. How else do they check you for it? I haven't had any issues with dry mouth either.
Well, we have a couple of things in common. I could have used the screen name "Mel B" too and just today my diagnosis was changed from RA to PsA, even though I haven't shown any real symptoms of Psoriasis. In fact, I was just diagnosed with PsA and Fybromyalgia today, after being told for 10 years it was RA, so I'm a bit confused.
I used to get small patches off dry skin from time to time but I never thought it was anything to worry about medically. Come to think of it, I haven't had them since I started Humira, but over the last few months my arthritis pain has been getting worse.
When I was first diagnosed with RA, my rheumatologist sent me to see a dermatolgist because I has a small bit of flaky skin inside my ears. The dermatolagist said it wasn't Psoriasis, so I was given a diagnosis of RA even though I had no rhuematoid factors in my blood.
But my new doctor noted where my worst inflammation was. He noted my "sausage" fingers and toes, and the arthritis in my hips, neck, and especially my feet. Most days walking is an act of will. He also mentioned ridges in my fingernails and my dry eyes.
I don't know why it bothers me that I was misdiagnosed all those years ago, especially since the treatment is the same, but it does.
Well hi there imablack,my last name is brown! Too funny...
I know what you mean about the diagnosis, part of having a condition like this is that you are always seeking answers and a correct diagnosis goes a long way toward that. I read the recommended book about PsA on this forum and the whole time I was thinking, THAT'S ME!
I would read about RA and never really feel like it sounded familiar, I had pain and fatigue and swelling, but never all this tremendous heat that RA sufferers report in their joints. At least we were getting more or less the correct treatment to slow the disease and that's important.