It's been a couple of weeks since I've been on the site. I was wondering if it is normal to be diagnosed with other conditions while having Psoriatic Arthritis.
Over the past few weeks, I've had a series of Rheumy appointments, x-ray, MRI, DEXA scan, and a Nerve velocity conduction text. Out of these have come additional diagnosis. I was already aware that I had Psoriatic Arthritis, Inflammatory Arthritis and Osteoarthritis (knees). The additional diagnosis include Fibromyalgia. The DEXA scan show that the bones in my lumbar spine are beginning to deteriorate.
I'm starting to panic a little. Is it normal to have multiple diagnoses? If so, are they manageable? Any advice would be greatly appreciated.
I don't know about fibro, that is a dicussion all of its own. Everything else is really just an "explanation/description of what the PsA has done to you.
There are a few folks who seem to really get off on listing every descriptive explanation and detail of thrir work up. Its not that those things aren"t helpful in terms of planning an attact/treatment plan. But thats where it should stop. My experience has been that people who dwell on the list are rarley in haelth spot mentally and the disease over whelms them on a mental level as well as aphysical level.
To answer your question we all have these multiple diagnoses. They are simply two dollar words to say "holy crap my (knee, back, foot, pick a body part) hurts like hell.
My understanding is wherever we have osteoarthritis (normal degeneration with age and use) we are likely to get PsA which is one of the inflammatory arthritis. In other words it looks to me that different doctors are describing what they see on scans etc but all fall under the diagnosisof PsA. Except fibromyalgia. If you read the diagnosis criteria of fibromyalgia it reads very similar to PsA. It involves trigger points which correspond with tendon insertions which are a hallmark of inflammation in PsA. I personally stopped my Rheumy from adding it to my diagnosis list. The reason being that fibromyalgia is a greatly disputed diagnosis and sometimes very obsessed patients and patients who are drug seeking get this diagnosis. I do not want to be disbelieved or minimized anymore than I do to myself! I find people with this diagnosis are frequently blown off or not taking seriously.
Hi tntlamb. Thank you for the advice. I'm trying not to dwell on the diagnoses. I'm just scared out of my mind. I didn't realize the full impact of PsA.
As far as the Fibro, my Rheumy thinks it might be inherited from my parents... My mom has Rheumatoid Arthritis, Osteoarthritis (knees) and Fibromyalgia. My dad has inflammatory arthritis and degenerative bone disease in his back.
In any case I try not to complain. I guess it is what it is. Thanks again.
tntlamb said:
I don't know about fibro, that is a dicussion all of its own. Everything else is really just an "explanation/description of what the PsA has done to you.
There are a few folks who seem to really get off on listing every descriptive explanation and detail of thrir work up. Its not that those things aren"t helpful in terms of planning an attact/treatment plan. But thats where it should stop. My experience has been that people who dwell on the list are rarley in haelth spot mentally and the disease over whelms them on a mental level as well as aphysical level.
To answer your question we all have these multiple diagnoses. They are simply two dollar words to say "holy crap my (knee, back, foot, pick a body part) hurts like hell.
Hi Sybil. As I mentioned to tntlamb, my Rheumy thinks the issues I'm experiencing are inherited from my parents.
I've mentioned to my Rheumy how scared I am. As far as I can tell, he is aggressively treating my symptoms. He added a medication to treat the Fibro and has me taking calcium and vitamin D to help with the bones in my back.
I just didn't realize PsA would have a much greater impact that I expected. Thank you for the kind words and advice.
sybil said:
Hi there, sorry to hear about these multiple diagnoses. I think for most of us it's hard enough to get our heads around having PsA and any further problems are mightily confusing, not to mention scary.
From what lamb says, everything except possibly the fibromyalgia are likely to be linked to / caused by PsA. I find that quite helpful personally but what I'm wondering is what does your rheumy say? I read a lot of wise words on here, some of which are backed by considerable knowledge but the most helpful thing of all is having a doctor who takes the time to explain what is going on.
Is there any chance of getting back to your rheumy to say that you are panicking a little and to ask about where you go from here?
But yes, to answer your question more directly, it does seem 'normal' for PsA to lead to other problems. I hope you get some more info and that these diagnoses seem less daunting the more you know about them.
Hi Michael in Vermont. I completely understand what you are saying. When he told me about the Fibro, I asked him was he sure. I've been trying to get him to take me off some of the medications. We've tried a few time to remove certain medications...after a couple of weeks of feeling okay, I would experience a severe flare up. I've been told that treatment plans affect everyone differently; but, I wish I had one that didn't require so many meds.
I'm still young and feel my body has completely turned against me. It's very scary. Thank you for the advice.
michael in vermont said:
My understanding is wherever we have osteoarthritis (normal degeneration with age and use) we are likely to get PsA which is one of the inflammatory arthritis. In other words it looks to me that different doctors are describing what they see on scans etc but all fall under the diagnosisof PsA. Except fibromyalgia. If you read the diagnosis criteria of fibromyalgia it reads very similar to PsA. It involves trigger points which correspond with tendon insertions which are a hallmark of inflammation in PsA. I personally stopped my Rheumy from adding it to my diagnosis list. The reason being that fibromyalgia is a greatly disputed diagnosis and sometimes very obsessed patients and patients who are drug seeking get this diagnosis. I do not want to be disbelieved or minimized anymore than I do to myself! I find people with this diagnosis are frequently blown off or not taking seriously.
I am sorry Techmomof2. It is overwhelming at times. I guess the labels don't matter as much as a good medical plan. it does get better I promise. We all have days we get overwhelmed and days where we fell almost normal! Just remember to be kind to yourself when you are feeling down. There are medical reasons we feel so blue at times so be sure to cut yourself some slack. I will keep you in my thoughts and prayers.
There is a blood test for fibro. Here is the thing there used to be 66 entheses point s for PsA then it was simplified to 15 for somr of the scales. 14 of those 15 points are exactly the same as the 14 tender points for fibro. Michael gives good advice.
Unless I had the positive blood test, I'd fight it hard.
It's completely normal to be scared and worried, especially when doctors are throwing multiple diagnoses at you. It sounds like your doctor didn't do to much explaining as to what each entails and how they're connected. Have you asked further about the fibro diagnosis - was that due to outcome of bloodwork, muscle testing, and tender points or just tender points? If you don't know, it would be worth finding out.
I have multiple diagnoses, most of which don't have to do with PsA, but all of which are autoimmune. Basically, my body is attacking itself in multiple ways, so instead of dwelling on each individual diagnosis and what it means, I look at the big picture - I have autoimmune issues. I'm aggressively treating the issues, and Remicade is taking care of two different issues, which is great. I'm a person who went from no meds to strong, scary meds. For me, it helped to focus on what I can do to improve my health (meds, eating right, moving as much as possible, reducing stress, etc). If I focused on the ramifications of all my issues, I'd go insane with worry. There is nothing I can do except live as healthy a lifestyle as possible, so that's what I'm doing.
Hi nym. I'm not sure if any of the blood tests he ordered involve fibro. The usually draw my blood right after they insert the IV, so I usually don't see the order. The nursing in the infusion room do the blood draws. I don't know must about muscle testing...so I'm not sure if that was done. I do know that he check tender points...he did mention that one. He ordered the nerve velocity conduction study to be sure I wasn't having any issues with my nerves not communicating.
In my opinion, I'm on way too many medications. I hope it is okay to list them here... I'm wondering if I should question some of them a little more. I'm on Remicade, Prednisone, Methotrexate, Diclofenac/Misoprostol, Gabapentin, Folic Acid, Calcium and Vitamin D.
I've always been a worrier. I do try to focus on what I can do...but I do get extremely frustrated when I can't do something I used to be able to do. Over time, I guess I will learn to let it go.
Thank you for the advice.
nym said:
It's completely normal to be scared and worried, especially when doctors are throwing multiple diagnoses at you. It sounds like your doctor didn't do to much explaining as to what each entails and how they're connected. Have you asked further about the fibro diagnosis - was that due to outcome of bloodwork, muscle testing, and tender points or just tender points? If you don't know, it would be worth finding out.
I have multiple diagnoses, most of which don't have to do with PsA, but all of which are autoimmune. Basically, my body is attacking itself in multiple ways, so instead of dwelling on each individual diagnosis and what it means, I look at the big picture - I have autoimmune issues. I'm aggressively treating the issues, and Remicade is taking care of two different issues, which is great. I'm a person who went from no meds to strong, scary meds. For me, it helped to focus on what I can do to improve my health (meds, eating right, moving as much as possible, reducing stress, etc). If I focused on the ramifications of all my issues, I'd go insane with worry. There is nothing I can do except live as healthy a lifestyle as possible, so that's what I'm doing.
It is pretty normal, I think, to be a bit scared with all those words floating around. The fact is, PsA is an inflammatory disease and sets you up/cohabits with a number of other issues that are also caused by inflammation.
It isn't fun to take lots of meds, I joke I have an "old lady purse," but you've got to follow the treatment plan even if it seems like a lot unless you and the doctor agree to stop some meds. Then again, I consider it 'a lot' of meds when they can fill a whole 4 oz cup like my old kidney failure patients' meds did.
Hi there, I don’t really have advice, just wanted to say that many of us have multiple diagnosis. I suppose I look at it as, “you get what you get.” I don’t mean that in a negative way, I think some of us are more prone, and some of us just have more testing done, due to the PsA. I, for instance, went to the Neuro, for eval of my neck, as it was “bound up,” so badly that the muscles and tendons were poking out, like I have wings. The thought process was that I had some sort of damage, because of the PsA, it turned out that I have MS, as well. Honestly, I don’t know how long it would have been, before they found the MS, as I was, at the time, so incredibly disabled from the PsA, I couldn’t really get past the pain, to ask why I had such muscle tremors and numbness and muscle spasms…But there it was. On a positive note, my docs are working together, to see if there might be a treatment to help with both, instead of being on the (what seems like) millions of meds I take now. Anyhow, hang in there…You may not ever have affects from some of these multiple diagnosis, and if you do, it will be helpful for you to have the prior knowledge of these issues. Good luck! Kris
Sunny & 4hooves4me... Thank you for your response. When I start to whine about taking so many meds, my mom always puts into perspective by asking if I would like to switch meds with my father...he has stage 4 kidney failure. That usually stops me from whining pretty quickly.
I would have to say that if it weren't for all the tests ordered by my Rheumy, I wouldn't be on a treatment plan that allows me to do have a few more "feel alright" days. If I hadn't told him about the symptoms I was still experiencing, he might not have ordered the additional tests.
I'm sorry to hear about you having MS. You too hang in there. Hopefully your docs can come up with a treatment plan that takes care of both conditions.
I really dislike it when someone tries to put someone else's pain and misery into perspective by one-upping them with a more serious disease / more pain/ whatever. That's just wrong. ANYONE who is suffering in any way should be shown compassion, not be told that because someone else they know has it worse, they shouldn't complain. And for many of us, it's difficult to help others be aware of what effect our disease is having on us on any particular day without sounding like we're complaining. Ugh.
Techmomof2 said:
Sunny & 4hooves4me... Thank you for your response. When I start to whine about taking so many meds, my mom always puts into perspective by asking if I would like to switch meds with my father...he has stage 4 kidney failure. That usually stops me from whining pretty quickly.
What has helped me find peace with my meds and the volume of them has mainly been time. There was a time when it seemed like we were adding a new drug at every visit and it was pretty overwhelming. But as things went on, I began to really appreciate the positive changes my meds make in my life, and I am now glad to have them to take. They help me get closer to a more normal me, and that’s a good thing.
It certainly seems pretty common to have multiple diagnoses with any autoimmune disease. We are more susceptible to other autoimmune conditions, and there are quite a few people carrying around multiple labels. The good thing is that a lot of the treatments are the same, so even though you have more labels, it doesn’t necessarily mean more meds or different treatment plans.
This whole thing gets easier and more stable as time goes on. One of the toughest things is learning to be patient!
Hi nym. I'm sure my mom doesn't mean to discount what I am going through. We are sounding boards for each other...as she suffers a couple of autoimmune conditions as well. I'm sure it is just the stress talking - we are both care givers for my dad. So, I try not to take what she says personally. Thanks.
nym said:
I really dislike it when someone tries to put someone else's pain and misery into perspective by one-upping them with a more serious disease / more pain/ whatever. That's just wrong. ANYONE who is suffering in any way should be shown compassion, not be told that because someone else they know has it worse, they shouldn't complain. And for many of us, it's difficult to help others be aware of what effect our disease is having on us on any particular day without sounding like we're complaining. Ugh.
Techmomof2 said:
Sunny & 4hooves4me... Thank you for your response. When I start to whine about taking so many meds, my mom always puts into perspective by asking if I would like to switch meds with my father...he has stage 4 kidney failure. That usually stops me from whining pretty quickly.
Hi GrumpyCat, I agree that the meds are helping. This issue is it is so hard to remember which ones I've taken. Some are three times a day, others are twice a day, once a week, take with food, take without food, etc... I'm sure I will eventually get used to when to take what. Thank you very much for the advice.
GrumpyCat said:
What has helped me find peace with my meds and the volume of them has mainly been time. There was a time when it seemed like we were adding a new drug at every visit and it was pretty overwhelming. But as things went on, I began to really appreciate the positive changes my meds make in my life, and I am now glad to have them to take. They help me get closer to a more normal me, and that's a good thing.
It certainly seems pretty common to have multiple diagnoses with any autoimmune disease. We are more susceptible to other autoimmune conditions, and there are quite a few people carrying around multiple labels. The good thing is that a lot of the treatments are the same, so even though you have more labels, it doesn't necessarily mean more meds or different treatment plans.
This whole thing gets easier and more stable as time goes on. One of the toughest things is learning to be patient!
Again, I had similar issues. I needed up getting a weekly pill box with 4 compartments for each day. I used it a lot to help keep things straight. There was just to much to remember. It helped a ton. I don’t need it as much now, since things have evened out a bit. The best box I found was at Cvs. It has big compartments that are easy to fit uncoordinated fingers into and has a button to press to open each compartment. I found several that were broken in the packages, so open the package first to make sure that everything is in working order before buying.
Techmomof2 said:
Hi GrumpyCat, I agree that the meds are helping. This issue is it is so hard to remember which ones I’ve taken. Some are three times a day, others are twice a day, once a week, take with food, take without food, etc… I’m sure I will eventually get used to when to take what. Thank you very much for the advice.
GrumpyCat said:
What has helped me find peace with my meds and the volume of them has mainly been time. There was a time when it seemed like we were adding a new drug at every visit and it was pretty overwhelming. But as things went on, I began to really appreciate the positive changes my meds make in my life, and I am now glad to have them to take. They help me get closer to a more normal me, and that’s a good thing.
It certainly seems pretty common to have multiple diagnoses with any autoimmune disease. We are more susceptible to other autoimmune conditions, and there are quite a few people carrying around multiple labels. The good thing is that a lot of the treatments are the same, so even though you have more labels, it doesn’t necessarily mean more meds or different treatment plans.
This whole thing gets easier and more stable as time goes on. One of the toughest things is learning to be patient!