Hello, my name is Amy. I’m 39 years old, a wife, and mother of three children.
I feel like my entire life, world and health has completely fallen apart. I began having health problems one year ago, just not feeling well, a lot of swelling and water retention, pain. I went to my DR who ran several labs. My white count has consistently been elevated for a year now, currently 13, my blood count is consistently low. My SED rate was 66, and CRP was 39. Lots of inflammation! My doctor sent me to an oncologist with the concern of lymphoma and leukemia. She ran her labs and didn’t see any markers that alarmed her at the time. I still will see her every three months for labs. She referred me to a rheumatologist due to high SED rate and CRP.
At my first appointment with my rheumatologist he ordered a bone scan and labs. My RA factor was negative.
The bone scan results were: intense activity in SI joints, spine, intense activity in both elbows, wrists, fingers, knees, ankles, feet, toes, all symmetrical. I was diagnosed with Psoriatic Arthritis. I have never had psoriasis but my mother, all of her brothers and sisters as well as her mother had severe psoriasis. I understand I carry the gene, perhaps. I did break out in a rash that went all the way around the back of my neck. That happened about five years ago and lasted for about one year then went away. Not sure if that was related.
My mother passed away suddenly and unexpected, two years ago. She had just turned 60. I grieved myself to near death. I believe my grief and stress triggered the onset of my health problems.
My rheumatologist started me on Methotrexate but I did not respond after four weeks of treatment and my liver enzymes were continuing to increase. I also have fatty liver infiltration.
He said we have to take a different approach and so I began Cimzia injections two weeks ago. I just had my second injections yesterday (3-27). I’m having a lot of belly pain. I’m terrified of the possible side effects I’ve read about with this medication: fatal infections, heart failure, lymphoma, leukemia, other rare cancers!! I’m scared to death!! I’m only 39 and I have three children that need their Mommy!! My youngest son is a type one diabetic.
I’ve expressed my concern to my rheumatologist and he basically said I don’t have a choice. If I don’t accept the treatment, the inflammation in my body is going to cause the very same side effects that Cimzia carries.
I feel like my body just blew a gasket and everything fell apart.
He also diagnosed me with fibromyalgia.
I am having such horrible pain 24/7, not only in my joints but in muscles, tendons and even veins! I’ve been having so much pain with my veins in my legs! A recent ultrasound did not detect a blood clot.
My acid reflux is out of control.
My labs have been indicating pre diabetes. I have gained a lot of weight in a short time period.
I’m having a lot of problems with my throat. My TSH is 6.0 so I’m concerned about my thyroid as well.
Each morning I wake up in severe pain in my back, joints, even the bottom of my feet! I’ve never experienced so much in my life and it is so scary!! Pain around the clock and new pains each day is so stressful and scary! The past year of my life has been doctors visits, scans, labs, tests and still more to come. My medical bills are enough to cause heart failure!
I’m so thankful I found this support group! I’m new to all of this and very worried!
Amy, you’re not alone! I could have written half your post myself! I am 40, 3 kids and same awful disease. I was only diagnosed in October but from flare that occurred in July. Been downhill, then uphill, then turn around and see where you end up ever since. My main issue started with my back and has professed to say 70% of my body and the poriosis is only visable on one elbow. This support group is amazing and you will find so much information you didn’t even know you needed here! Great people too. I read more than I post but the similarities couldn’t be ignored. I too am a newbie so I can only offer experience, minimal advice but definitely support. Welcome!
Thank you Rachael!! It is still all so new to me. I think that’s why I’m still so stressed and worried. I also think part of my problem is not understanding how much this disease and the massive amounts of inflammation has effected my entire body.
Oh Amy. Your story fits so many of us. You have come to the right place. This group is a very caring bunch. They give amazing support.
To me your rash on the back of your neck sounds like psoriasis to me. I am only mildly affected by Psoriasis in my hair, forehead,behind my ears, and in my gluteal crease but Psoriatic Arthritis has knocked me for 6, with Polymyalgia and Coeliac diagnosis at the same time
Regarding your meds, yes, some of them do have horrendous side effects, this is why your Rheumy monitors you so closely to ensure that they pick up anything that is not working well for you
Biologics for me are just the most amazing thing. I have had to jump through hoops here in Australia to quualify for them, and have only been on Enbrel for 5 weeks. That 5 weeks have been just life changing for me. I can't believe how much of a difference these drugs have made to my life.
Just remember you are a team working with your Rheumy and you have this huge support group of people who know exactly what you are going through, can offer you serious advise and become true friends.. - and yes I can say that after being a member for only about 12 months.
Best of luck
Bec
Hello Amy,
You are in, what has been described as, “The Gap”. This the awful place where you’ve been given your diagnosis but not your right drug regime yet. Your head is in overdrive about how you are possibly going to keep yourself and your family going, all the negatives about these drugs is the thing that jumps right out at you, while the pain and fatigue drains you completely. You grieve for your former self and think "is this it? is my life over"
We understand cos we’ve been there, ok we all have different lives, but we know that frightening place very well indeed.
All I can say is; hang in there, read as much info as you can about these diseases (I have fibro too) from medical sites. Simplify your house as much as you can, identify the essentials that actually need to be done and put everything else on the “pending” list. Most importantly DO NOT BEAT YOURSELF UP! We spend so much time trying to do everything we used to and getting frustrated that we can’t that our anger can turn towards ourselves. Most of us get better to a point where we manage a good quality of life, it just takes a bit of thought and the right drugs…as has been said on here as a kind of mantra “fear the disease not the drugs”. I can stand 100% beside that.
Good luck with it all, and remember we are here and we understand x
Hi Amy,
I just want to tell you, first thing, something I was told when I joined last year: fear the disease, not the meds. Although many warnings are posted on the biologics, they are very safe. I started Enbrel last year and it has made a world of difference. I have no side effects and my labs are staying normal. As far as I know, biologics don’t harm the liver or kidneys. Anti-inflammatories can reduce some of the pain–ask your doc how you can increase the dose for the short term. I took 3,000 mg/day of ibuprofen for a couple weeks while my back was out.
Your symptoms are bad, and being a young mom and trying to stay cheerful around your kids is exhausting in itself, much less all the housework, etc., that wears you out. But, there are good meds that can make you feel better, and all of us have different “tricks” up our sleeves for alleviating pain at least partially and for the short term. Ice packs and heating pads help. With kids, sitting around trying to apply ice or heat isn’t something you can do frequently during the day, but even once or twice helps a little. Some of us take fish oil capsules, and I also I take coq10. They seem to help slightly.
When I first started Enbrel–I got it through my dermatologist and took two injections a week for the first three months. That’s how dermies can prescribe it. It started doing its magic within days.
I just know things will get better for you once the doctor and you find what works best. You’ve been through a lot. My sympathies for the loss of your mom. So sad for you. I’m 61 and my kids and grandkids need me–they’d be devastated. I’m sure this has been the worst two years of your life. Things will get better. There’s hope!
Louise Hoy said:
Hello Amy,
You are in, what has been described as, “The Gap”. This the awful place where you’ve been given your diagnosis but not your right drug regime yet. Your head is in overdrive about how you are possibly going to keep yourself and your family going, all the negatives about these drugs is the thing that jumps right out at you, while the pain and fatigue drains you completely. You grieve for your former self and think “is this it? is my life over”
We understand cos we’ve been there, ok we all have different lives, but we know that frightening place very well indeed.
All I can say is; hang in there, read as much info as you can about these diseases (I have fibro too) from medical sites. Simplify your house as much as you can, identify the essentials that actually need to be done and put everything else on the “pending” list. Most importantly DO NOT BEAT YOURSELF UP! We spend so much time trying to do everything we used to and getting frustrated that we can’t that our anger can turn towards ourselves. Most of us get better to a point where we manage a good quality of life, it just takes a bit of thought and the right drugs…as has been said on here as a kind of mantra “fear the disease not the drugs”. I can stand 100% beside that.
Good luck with it all, and remember we are here and we understand x
Thank you all so much!!! I haven’t been back on here in a few days. Still having a really rough time.
Louise, your first paragraph is my thoughts EXACTLY!!!
I have had my second loading dose of Cimzia (four weeks now). I am still in so much pain and having so many crazy symptoms.
My legs kill me with pain. To me, it feels like my veins are being stretched. I had an ultrasound to check for blood clots, none were found. The pain is awful.
I’m also having quite a bit of belly/abdomen pain. I read that can be from the Cimzia.
As I posted previously about my throat problems, I also had an ultrasound of my thyroid. They found two nodules. The technician said she doesn’t think it’s anything serious. My doctor is on vacation this week so I will not hear the report and plans until next week. Praying she is right and it’s nothing serious. My TSH continues to creep up. It’s at 6.0 as of last check.
I just hope and pray there isn’t more going on that hasn’t been found.
Since being on Cimzia, my SED rate and CRP has dropped a little which is some hope. Both are still really high but at least went down some.
I am just drained! No energy whatsoever. I try to walk a little but it hurts so badly! I cannot believe I am in this shape at 39! I just want a restart button! I’ve always been a strong person until now and this has broken me. I’ve never experienced so much worry and fear in my life!! I know with losing my Mom and other close family members to cancer that all this pain has caused me to worry that it is that same fate for me! That does not necessarily have to be true and I cannot give up!!
Yes, Grandma J, we needed my Mom. She was loved so much and we are such a very close family. Watching my Dad grieve for her is so heartbreaking. My Mom and my daughter were best buddies. It has devastated all of us and like I said probably what triggered this nightmare for me.
Thank you so much Becstar!
I’m so thankful for this group! I’m very new to all of this but I already love you all!!!
Thank you!!
So sorry to hear about what you are going through. I first got sick about 14 years ago, and only just got diagnosed with PsA. When I first got sick, it turned my life upside down too...had to stop working and drop out of grad school. I have to say that I have adjusted, over the years, to being disabled. A friend who is also disabled (but with another condition) said to day that he likes to reframe the issue. He likes to think about being grateful that he can do everything he can do. I think it is a good thing that you were diagnosed relatively soon after you got sick. The disease has had a lot of years to damage my joints. Hopefully, your kids will grow up as more compassionate human beings as a result of seeing what their mommy has to deal with. I think it is really important to give yourself a break and not expect perfection. You just do the best you can and things will get done and taken care of. Best wishes to you.