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So many questions…..

  • By jcamp05

    I was only recently diagnosed about a month ago. I had been in pretty consistent pain for about two years that got quite aggressive last fall. However, there has been pain since my 4th grade year of school that started in my ankle with swelling and concerned my mother that I had somehow broken it and we didn’t realize (I was accident prone to say the least. I think it’s genetic from my Dad haha.) She said the doctor at the time diagnosed me with JRA. I don’t remember and there wasn’t any real treatment other than to try to stay active and Tylenol for pain. This was 25ish years ago. I have been skeptical of that diagnosis for years just because, even though I had pain on and off in various places my entire life, it didn’t seem “that bad”. I was in a bus accident at 14. I had some back pain and my mom took me to the doctor. They said pulled muscle sent me home. After that I would have random moments of low back/hip pain. At times (especially if I laid on my back) it would seize up and back it impossible to move my legs for a few moments. Things started getting worse in my 20s. Especially after my first pregnancy. I went to the doctor and he tested my thyroid which came back fine. Suggested vitamins and exercise. A couple years later I start to notice soft, cyst like places on my knees accompanied by pain. 6 years later, second pregnancy. Blood clot and thinners. I start noticing a athletes foot rash (blisters of clear fluid that itches like crazy and then my skins peels and cracks) on my foot. Two years post pregnancy the pain is more common but mostly I’m so tired. So, so tired. I’m gaining weight and can’t get it off. The rash on my foot has spread to almost the whole foot. My Dad has psoriasis had his same rash diagnosed as psoriasis. Dr test thyroid again. Its clear. Two years later, I’m having some edema in my legs and hands, pain is becoming more frequent and is in my hands, wrist ankle, toes, fingers, elbows, hips/back, knees, and my shoulders and between my shoulder blades. I’ve noticed sometimes I have to work to get a good full, deep breath. I’m definitely stiff a fair amount of time. The psoriasis has moved to both feet, my hands and elbows. Hair loss, exhaustion, inability to loose weight, etc. I got to the doctor. Since my (thyroid) blood work was okay last time she suggest they test me for sleep apnea. I’m confused and decide to get a second opinion with my gynecologist. He does more blood work. (Oh, there was a visit with the GP in between the first and when she suggested the CPAP where I was low on Vit D). Its normal again for thyroid. He suggest weight pills and a uterine ablation. I’m ready to give up. This fall people are beginning to comment on the limp I’ve developed over the last few months and the edema and are concerned. My hands and feet crack and bleed. And I now also have big scaly patches over both ankles. Over the last year I’ve seen an increase in UTI symptoms, often with blood but rarely and actual infection. My monthly cycle has become irregular (anywhere from 2-5 weeks), painful and longer. During the holidays, I have an episode where my ankle seizes and I can’t walk stand on it for a while. Like I literally can’t move. I decide to start at the dermatologist in January (moved to husband’s better insurance) He says its a combination of psoriasis and excema. And he decides I need a referral to a rheumatologist (he suspects PsA). I want to cry right there in his office but I keep it together. Fast forward to May and my followup with the Rheumy. Its not PsA. Its RA. I was just so relieved the day she told me to have answers and excited to have a treatment started that was pretty much all I processed. A few things have happened the month since. I took two doses of methotrexate, then the morning after the second dose woke up with a flaming UTI. No warning. It was a Saturday that was booked up so on Sunday I went by the clinic in Kroger (I don’t have a regular GP anyway). I have been on an antibiotic for that since the 19th. Two doses left and now I’m having pain in the area of my kidney on my left side and it occasionally feels like its shooting down the my bladder. Had to miss last Fridays Methotrexate dose and was in horrible pain all weekend. Called the doctor Monday and they called me in a methylprednisolone pack. Started it Tuesday before breakfast. Had racing, pounding heart that night. Wednesday by lunch, a very flushed face, chest and legs, and lightheadness accompanied it. Nurse said not to take it until they can talk to the doctor. They called Thursday and called me in a lower dose. When they called about the steroid I asked about the kidney pain and continued UTI symptoms. They said to go back to urgent care (I decided on the urgent care associated with the system my rheumatologist is a part of rather than the Kroger clinic. I left the clinic not completely comfortable with them prescribing me meds and dealing with my “extenuating circumstances”.) and get another antibiotic so I stopped by after work. They wouldn’t do anything until I had been off the antibiotic a couple days. So, I will miss at least two doses of the methatrexate and wait.
    I have set up an appointment with a general internal medicine doc in the same system so that I have that relationship. I got pretty down last weekend between the intense pain and the UTI. I started researching to find ways for quick pain relief OTC or at home (Not a lot that helps really.) I ended up down a rabbit hole and with more questions then answer. I learned RA (or RD as I see many people are wanting to refer to it now) is much more than “arthritis”. I was unaware of how it could attack so much more of your body. How often do you have blood rest ran to check numbers? Can they fluctuate during flares and remission? I have so many questions and I’m work on a list when I go back in 3 weeks for another follow-up but I would like to be read up with support to back up my questioning. I have pretty bad edema pretty much everyday in my feet and legs and some pain in my chest/mostly back between my shoulder blades along with periods of difficulty getting a good, deep breath. I also have had issues with my blood pressure going up since the fall. Should I push to have test done on my heart? I have one eye that waters non-stop and lately they have both been getting a grainy, heavy, tired feeling. It last about 10 mins and goes away? I don’t want to be “that”patient and I feel like such a hypochondriac lately. Is this normal? Is this what I should expect? This medication trial and error, how long should I expect that to continue? Should I ask for a referral to see a urologist and cardiologist? I know that the range of this disease is so diverse. I know that I can do everything right and it not matter and it continue to progress. I know that I might not progress at all.
    My other frustration now is all the family and friends who suddenly have RA. Like my Mom and Dad and grandparents and aunt. Maybe they do. But I know that done of them are being treated for it. And I know they have good intentions but if one more gives me a home remedy or a new vitamin to try (FYI, I tried most everything before my diagnosis) I may loose it. I just wish I had someone who understood how scared I am at one day loosing my independence. How I am doing the research to do everything in my power to keep that from happening. How I want so much to be the mother for my younger children that I was for the older ones. How, even though I am almost 35, I am just now going back to work and starting my career. And while I am terrified and frustrated and depressed I am trying to be optimistic. I want my kids to understand how serious it can be so they don’t think I am lazy and just not wanting to do certain things. But I don’t want to over react and scare them.

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  • By ktinflorida

    Hi Jcamp05.
    Well, that was quite a lot of frustration you let out. Trust me, you are in good company.
    Where do I start? Methotrexate… MTX. You are just getting started, I think is what you said. It took me about 6 consecutive doses before it started to take effect with me. If you can stay on it, I think you will see results, but clear up the infection first.
    UTI… been there. What works for me is cranberry juice. I drink cranberry every time I empty my bladder. I read there is some compound in cranberry juice and blueberry juice that keeps the infection cells from attaching to the walls of the bladder and that causes most of the pain. I usually get relief within an hour and as long as I keep drinking, I am ok until the antibiotics kick in. This trick doesn’t work for everyone. Supplements don’t work and eating the actual fruits don’t work. It has to be juice only because that gets processed through the urinary tract.
    Breathing issues… Tell your Rheumatologist and stress this issue. There are serious complications of RA that involve lungs and heart. If your Rheumatologist is thorough, they should order a pulmonary functions test if for no other reason than to establish a baseline. They will probably also get an echocardiogram of your heart. They need to check pressures and monitor for things like interstitial lung disease amongst others.
    Find a good GP because you may need them to coordinate all of this stuff. Walk in places are convenient, but they aren’t built for people like us.
    Gee, my mom suddenly has RA too. And it’s not that bad. Evidently I’m just lazy and if I would get up and move more I wouldn’t be in the shape I’m in. Also, all of these medicines that I take for RA are going to kill me and are just a plot for greedy pharmaceutical companies to get rich off people. Of course, my Tupperware is also going to kill me, so I figure my days are numbered anyway with so many things out to get me. :>)
    PsA, RA, it is possible you have both. They call it Mixed Connective Tissue Disease. It is multiple autoimmune diseases. I have my SED rate checked twice a year. That monitors inflammation and goes up during flares.
    I think I answered some of your questions. I can definitely empathize with you. I remember when I finally got my diagnosis I was so relieved. It is hard to fight when you don’t know what you are fighting.
    Hope you feel better.
    KT

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  • By Thea

    Hi j camp, so sorry about your long haul struggle. I was also diagnosed with jra when I was 13. The rheumatologist said I probably had it much younger. As I entered my 20’s it morphed into RA is RD.I suggest taking AZO pain relief for uti’s. It numbs thay ararea.it works.your doctor can prescribe a stronger version. All the meds have side effects. I couldn’t take methotrexate. It made.me very I’ll.. I am on orencia, plaquenil tabs, ultram for pain management.. Most people have no clue about having RA. Even family members.Don’t be afraid. Once you get the right medication mix you will able to live with this. Kids are flexible. They adjust. Be honest. Things happen in life we can’t control. Go online and look up “The Spoon Theory”. That will help you. This is a systemic disease like Lupus. Home remedies won’t do. You must be your own advocate. I see my doctor and I as a team. I hope this helps a little. I will be praying for you. You will get through this. I have lived with RA for many years. I have just learned my limits. You will too.
    Thea

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  • By jcamp05

    Thanks you guys! I am hoping the Methatrexate helps but I have to be rid of this infection so I can actually take it. I try not to worry about side effects too much. Only to the extent of what to watch out for. Like they had to lower my steroid dose this week. I know there are risks to everything. I picked up some cranberry juice today. Along with some turmeric, which seems might help some with inflammation. We’ll see. I am working this weekend on looking at what my gym offers in way of yoga/Pilates that I can do on my schedule. They also have a pool, sauna and hydra massage that I am going to start using. So getting a plan together for that along with a diet plan. I’ve gotten an appointment with a internal medicine general practitioner in the same system as my Rheumatologist. I have that appt the week before I go back to my rheumatologist. I feel like the biggest tool I have at my disposal right now, if for nothing other than my sanity, is being proactive.
    But I am tired of being tired. And tired of hurting. Today, I went to the gym with my husband which consisted of the hydra massage, 10ish mins in the sauna, and about 15 on the elliptical (at a very moderate pace). Then we walked around Home Depot looking at a few things for about 20 mins. Then about an hour long trip to the grocery store. I let my family bring in the groceries and put most of the away. Other than that I started a cake for my daughter’s birthday and I am spent and sore. Hoping for better days soon.

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