Rheumatoid Arthritis

V, Health Guide

7/22/11 7:27am

Hi, Cheryl,

How long have you had RA? I don't see any meds in your profile. Is your RA under control?

Sometimes our family members live in denial for a while. They don't want to belief this is all happening. Kind of like we like to live in denial when we first are diagnosed. We just want to "wish" it away.

Would your husband consider going to a doctor's appointment with you? Sometimes hearing what the rheumy has to say first hand helps the diagnosis of RA sink in.

RA is a tough disease, but you can't give up. Juggling Life with RA: Time Management and Saying No is a post written by Lene Andersen, our mentor here at Health Central, and it has helped me a lot. I hope you have time to read it.

I don't want to write a book, so I will stop now with this thought. Please post whenever you feel like it and ask any questions you like. This is a caring community, and we are happy to have you here.

Blessings,

V

suzzy

7/22/11 9:47am

Hi Cheryl, im sorry you have RA , but im glad you found out what is going on with you .the next step is going through the med to get the ones that your body can acept an hopefully that wont be long . Im sorry your hubby doesnt understand what is going on with you. that in its self can be heart breaking. maybe you can ask him to come to your doctor vist an have the doctor explain what is RA an what it well do to your body when you have it . i know talking to people about RA an they dont have a clue what your talking about can make you feel very lonely. thats when you just got to talk to people that have it. to get understanding i know that might not sound right . but for me thats the only way i can get understanding an feel like some on does care. you has found the best site for people caring an listening. at any time you just need to vent you are more then glad to do it hurt i have just started my meds an talking about here helps so very much an some of them i couldnt take i wish you the best an hope you get this RA under control so you can get back to your old self again GOD BLESS an take care

Cheryl Rojo

8/ 3/11 9:51pm

Suzzy thank you for the thoughtful reply. I have given up on trying to get people to understand what I or we who suffer from this is like. I have also been told that I have degenerative Disk Diseaze so it is like a liveing nitemare liveing is so much pain.I have been told that my spine is so messed up that surgery is no option. So they are going to see about some kind of pain inplant.I haven't made the appt as of yet kinda scared.Well sorry for going on and on. Just wanted to say thank you and I hope you are doing good.Drop a line anytime.

suzzy

8/10/11 4:22pm

hi Cheryl, dang girl you got alot going on, i hope you can find help an relief very soon. my heart goes out to you.im glad you are here. i got you on my pray list . how have you been doing? have you seen anymore doctors? here a big soft hug

wonderwoman

7/23/11 4:50am

This is something I have to live with, like all of us, even although we all understand each other the pain is still individual and unique to each of us. But it is great to talk to those who are in the same arena.

wonderwoman

7/23/11 4:51am

This is something I have to live with, like all of us, even although we all understand each other the pain is still individual and unique to each of us. But it is great to talk to those who are in the same arena.

Cheryl Rojo

8/ 3/11 9:57pm

Thank You

Lene Andersen, Health Guide

7/26/11 11:29am

could you tell us a bit about what kind of medications you're on for your RA? If you haven't been prescribed a disease modifying drugs like Plaquenil, methotrexate or one of the Biologics yet, I recommend that you speak to a rheumatologist as soon as possible. Getting your illness under control is a huge step forward in achieving good pain control. However, even when your RA is suppressed, you can still experience pain and I'd definitely also recommend that you speak to your rheumatologist or your family doctor about better pain control. You may want to ask for a referral to a pain specialist to help you.

it can be very difficult to explain to others how you feel. I suggest you introduce your husband to this website so he can poke around and start getting an idea of what it's like through reading other people's voices. Sometimes it's hard to hear about pain coming from someone you love for the very simple reason that you don't want them to be in pain. More specifically, you may want to show him Karen Lee Richards' letters to loved ones about chronic pain which are incredibly helpful in terms of getting the discussion going. They are written from the point of view of somebody who lives with the chronic pain of fibromyalgia, but on a certain level, chronic pain is chronic pain so they can be very helpful to make people understand about a number of different conditions. I also wrote a piece about the different kinds of pain on my personal blog that may help the two of you begin to have a vocabulary about what pain feels like. As well, we have an area about pain management with links to a number of different posts on the topic.

You can also consider counseling, especially cognitive behavioral therapy which can be wonderful to help learn better coping mechanisms. Partly for you, but I'd also recommend seeing someone is a couple for couple of sessions - having a third, objective person in the room can make it easier to communicate what's really going on. if you don't have any insurance or money for counseling,we have a post on how to access such services when money is tight. If you attend a church, you may also ask the pastor for help in your family doctor may also be able to refer you to a community agency that offers counseling on a sliding scale.

I'm very glad you found a site. Hopefully, we can help you through this!

Lene Andersen, Health Guide

7/27/11 6:59pm

also, you may want to read my post on working through relationship problems related to RA.

Carole618

7/28/11 10:31am

Believe me - I am listening to you! I know what you are going through. I am on steroids right now and I am in a very bad way. Just had a shot of Enbrel..not sure if it is going to work. I have been so weak and cannot manage myself because I have put on so much weight from the steroids that I am depressed and just not telling my husband everything...Although he knows for sure!!! You are not alone.

Cheryl Rojo

8/ 3/11 10:09pm

Carole I feel for you.I have also gained lots of weight and it can get quite depressing.I have stoped all the shots though I still need to lose the weight. I am on Methadone,Molexicam,Methrotrexite sorry for the spelling plus other meds.My pain management doctor said there is nothing they can do for my back cause it is so far gone.Iam still concered young for all the stuff that iam suffering from but when we have to suffer from so much pain it realy don't care how old or young a person is.Well thank you for letting me vent a little.I hope you are doing better and if you ever need to vent hear iam for you.

Kimosaby

7/28/11 3:19pm

Hi Cheryl

Glad you found this site. We are here to give you support, relate, and it is a nonjudging group.

We all have RA from one degree to another. I am sure most of us have had issues with family and friends not giving us the support we think they should be giving us. It took some time for my husband to come around. He just didn't bring up my diseases. I think he felt uncomfortable to talk about it, plus he could not relate, or made the time to inform himself.

I was first diagnosed with Lupus and then RA. I made sure that I brought my husband to almost every appointiment. I wanted him to hear it from a professionals voice and not my own. My husband started to ask some questions, was open to listening, and was very supportive always.

He has come a long way, and after 8 years of dealiing with me being disabled and having Lupus and RA and other conditions, he has accepted it. He makes sure I rest. He helps out around the house alot, and makes most dinners when he is at home.

Recently I had a big scare last week where I had to go to the emergency dept. I had Pleurisy in a bad way. The pain was the most extreme pain I think I have ever dealt with. It could not move a muscle, yawn, sneeze, or even burp without extreme pain. It was pretty scary for me, and my husband as well. I don't think he or I ever want to repeat what I went through last week again.

I oringinally thought that I was having a kidney issue, but with the care of the many doctors, tests and hopitals visits, I was wrong.

Well it is the week after and my symptoms of pleurisy have gone down alot, thanks to anti-biotics, anti-inflammatories, and muscle relaxants besides the meds I already take. I am still in pain, and have to watch myself still, but last night was the first night that I could sleep in my bed instead of being propped up in the corner of the couch like a recliner. I still woke to pain a couple of times, but it is so much better than what I had to deal with.

I have so many brusies on my arms from IV needles, I have had 2 x-rays, and one CT scan with iodine contrast. It was thought that I had a blot clot in my lung as well on Monday, but the CT scan ruled that out thank god.

Now I have another app. on Wednesday with the Dr. again. If my symptoms are not better or gone, she will most likely send me to a lung specialist.

I did some research and it seems that Lupus, Rheumatoid Arthritis, and Methotrexate can cause Pleurisy besides bacteria and viruses.

Weight your options out on the treatment that your Rheumatologist wants to propose for you. If he or she would like to prescribe whatever ask about the risk factors. Sometimes the positive results out weight the negetive.

I stopped Methotrexate temporarily just because it doesn't mix well with the anti inflammatories. It causes the Methotrexate dose to almost double when mixed with anti inflammatories. Which can cause problems for your liver.

In Feb. and Mar. I had Rituxan infusions done, which is a biologic medication that has to be administred by IV. I waited and waited many months and the infusions did not work for me, so my rheumy is setting me up with another series of infusions for Rituxan. He says usually when the first time doesn't work, the second time around has better results. If the second round of Rituxan doesn't work for me, then I think he will be trying this new medication out called Benlysta.

What works for one person, might not work the same for another. It takes time for your rheumy to figure out the right cocktail for you that works best, and without so many side effects.

I hope your husband comes around, and your family as well if they aren't being supportive. Just know you have us here anytime you want. You can talk to us for just about anything. Take care Cheryl

Cheryl Rojo

8/ 3/11 10:24pm

Komosaby Iam so glad to hear you are doing better from your ordeal. I also just found out that I have Dengernitve Disk Disease and my pain management DR. said there is nothing they can do for me. They tried injections but with no relive. After he saw my Xrays he ordered he said that my spine is to far gone for him to be able to help. As of now I can't even sit without being in pain. But from listening to all you have to go thru I feel for you. I pray you are doing better and can get some help for all of your pain.Keep in touch and let me know how you are doing OK. I do care.

Bye for now.

Cheryl

Kimosaby

8/ 9/11 8:59pm

Hi Cheryl

Sorry to hear that you are in so much pain. I have degenerative disc disease as well. The neursurgeon won't operate on me either. I have RA plus Lupus and some other conditions. They kept saying as long as my lupus is so active that they won't operate at this time unless it is an emergency and I lose bladder and bowel control.

I already had a back operation in the past for my lower back, and the same discs are herniated again. I take all kinds of pain killers, and nerve block meds for this and just pain in general for the rest of my body. Only helps out a bit, and some days not at all.

I have had pleurisy since around the beginning of June, and it got really bad around mid July. I had to go to the emergency because of the pain, another time after that because my doctor thought that I should to be monitored. I have been on anti this and anti that. Muscle relaxants, many x-rays, CT scan, EKG, blood thinner etc. I am still on anti-biotics because the pleurisy is not gone yet.

I will have to see a lung/respiratory specialist very soon. I was suppose to go for more infusion treatments for Rituxan, but with everything that is going on, that has been postponed until further notice.

Doctor also thinks I have an enlarged heart, so have an app. next month for that. At least my team of doctors are working together, and are communicating to get to the bottom and get me well.

My son is getting married at the beginning of next month, and I wish to have more energy soon.

Take care Cheryl

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