Exercise in my daily life

2 in 5 Rheumatoid Arthritis Patients Sedentary

Many RA Patients Who Avoid Exercise Unaware That Physical Activity Can Ease Symptoms

By Matt McMillen 
WebMD Health News

Reviewed by Louise Chang, MD

RA, which affects 1.3 million adults, is a painful condition that causes joints to be swollen, stiff, and damaged. Inactivity puts RA patients at risk of increased pain, weakened muscles, poor balance, and stiffened joints. But many people with RA lack the motivation to exercise -- or don’t know that exercise may help them feel better.










I will be completely honest with myself here.  I find it very hard to exercise.  Most people think that I have an aversion to the work of exercise.  It is very hard to explain that, that is so not the case at all.  It is not that I am unmotivated.  I also do know that a regular workout would be good for me.  ALthough I also know that my body has different limits to others.  In fact we are all different.  When I work out, I love it.  Although I am for the most part unable to.  I find it very insulting that people with RA are deemed "lazy" or "unmotivated".  The truth of the matter for me, and I believe many others, is that we have to pay close attention to our joints.


Work through the pain, it will get easier




     This is a phrase that works for so many people.  Although I have been told it by a personal trainer.  When I explained to her that no, that doesn't work for me, she told me I was wrong.  Pain for a person with RA can indicate we are doing ourselves more harm than good.  It is a very thin line.  We don't want to work so hard that we further damage joints that are already in danger.  That in the end will hurt us more than help.  I drew lines with my PT at the time, and she constantly tried to push them.  Like trying to get me to do pushups.  I can't do pushups.  My wrists are damaged and in need of replacement, but the pain from the damage has not gotten to the point that I qualify for a replacement.  So do I stick to my guns and not push myself or do I push.  I stuck to my guns.  In my opinion it wasn't worth putting myself into surgery sooner rather than later.  And, you know what, that was OKAY.  It is after all my body.
     Each one of us has to find our line.  What I mean to say is, yes we can work through a certain amount of pain, and yes that may get better, but it may not.  I think we can all learn our bodies and joints though.  I think there is a distinct difference between a normal workout pain, and a this is hurting my joint pain.  Once we learn that, we can work with it and to it.  Never should we allow ourselves to be put into a position that we are pretty certain will hurt our joints.  If you have a PT that won't listen to the limits you know you have find a new one.

Rheumatologist Cong-Qiu Chu, MD, PhD, agrees that patient education is essential because many patients are afraid to exercise. They believe that the strain may make them feel worse. In his practice, however, Chu has found that patients who are informed about the benefits of exercise become motivated to get active.

“Most patients are motivated to be functional  -- they just don’t have the knowledge that it is good for them,” says Chu, who directs the Early Arthritis Clinic at Oregon Health and Science University in Portland.

How much exercise a person is capable of must be determined on an individual basis, but Lee advises following the latest federal guidelines, which recommend 150 minutes of moderately intense activity each week for adults.

“We’re not encouraging our patients to do anything overly vigorous,” she says. “Water aerobics or 10 minutes of walking briskly, as if late for a meeting, are good exercises.”

Just get over it

     Honestly if I could I would.  Truth be told, I have permanent spinal damage.  With that comes issues. Issues like not being able to stand or walk for extended periods of time.  The facet joints in my lower back are damaged.  That means that simple things like twisting at my waist is painful, and dangerous for my back.  This is something I just can't GET OVER.  It is something I have to, and am learning to work with.

I think in a lot of ways we are unfairly labeled.  Even in the article I have been quoting.  What I would like to know is how many of the participants were in a flare.  I don't know about anyone else but during the middle of a flare I can't get up and work out.  Sometimes in a flare I can barely even get up to go to the toilet.  Forget about things like feeding myself, let alone working out.

http://www.netdoctor.co.uk/ate/musclesjoints/203553.html

Exercise for someone with rheumatoid arthritis

As a general rule try not to work through the pain regardless. Your body is telling you, when it hurts, that you are doing too much and if the discomfort lasts for more than an hour after exercise, you have overdone it.

http://www.uptodate.com/contents/patient-information-arthritis-and-exercise

I have posted a few articles that I have found helpful.

Alternative Therapies VS Medication

We are all in the same boat so to speak.  We are all living with our bodies and the things they do to us.  I have on many occasions said, my body has betrayed me.  Should we really attack, badger, and belittle each other for the decisions we make.  I have never told anyone they should not do something or that I think they are making a mistake.  I have asked friends to be careful and keep a close eye on themselves.  That was merely out of concern though.  Never would I  degrade a person for the decisions they make.  Don't we all deserve that same curtesy.  I do understand how excited people are when they "FIND" a new regime.  Could we all just maybe sit back and think before speaking.  You never know how a person may react to what you say on any given day.  There are times I take things to heart.  I feel attacked and belittled or degraded by things that are said.  Not necessarily because that is how the person meant it, but because that is where I am.  It is hard to always be up when you are always in pain.  I am trying to monitor my interactions with everyone, simply so I can help instead of hurt.  I would hope and pray that we can all support each other in this journey.


How a person with Rheumatoid Arthritis decides to treat their disease is a very personal and soul searching one.  For most of us it is anyway.  Personally I sit down and actually research a medication before I start it. Usually I am given a choice and I make an informed decision on which to go with.  That being said, I don't delve so deeply that I scare the crap out of myself.  I have done that before and it is too stressful.  Stress isn't good for a person who has any kind of illness, ours feeds off of it though.  Too much stress = flares = having to up pain medication = being miserable and or the inability to function.  Unless I am starting a new biological I do a cursory look at things like, what side effects do I need to go to Accident and Emergency, if I experience.  I also check to see if any red flag articles have been published, that will keep me from trying the medication.  I have only found those types of articles with biological medications though.

After I start the new med I pay close attention to my body for a few days.  If I experience something that I think may be a side effect I will again look the med up.  If it is but falls into an acceptable category, then I continue on.  The thing I have found out about ALL the medications I have been put on is that the side effects I have experienced are self regulating in the body.  SO once my body grows accustomed to taking the med the side effect usually lessens and go away after a short period of time.  Like when I started plaquanil, I had a fairly bad headache for about six weeks.  Yes in the life of a person living with RA 6 weeks to adjust to a medication is considered a short time.  Now even I have to admit there have been some drugs, take Enbrel for example that I almost quit because of the side effects.  I had such horrible migraines after starting it, that the relief I got from my RA Symptoms didn't matter, while I had the headache.  Some of those headaches lasted for days as well.  I did continue on though, and the headaches lessened.

I will never say that the path of taking medications for our disease is an easy one.  It isn't, we have to consider it carefully.  The thing is that even if we did decide to go and change our diet, and limit our intake of certain foods and substances, we could still be suffering damage.  If you aren't paying attention to what your blood markers are saying, you aren't paying attention to your disease.  My disease despite being on a biological that is lessening my pain, is still active.  I am still suffering damage and swelling despite the drugs.  Before you say, well then you should cut out certain foods.  I have tried that, in fact currently I have cut out all the added sugar in my diet.  Being a Southern Gal from Tx and Tn I love my sweet tea.  I cut it out though, and it has made NO DIFFERENCE what so ever on my inflammation.  I have made a huge change in my diet and calorie intake, in fact on top of the sugar I have also cut out caffeine.  I didn't do these things for my RA I did them to be healthier overall.  Is that happening YES, but again it is not making a difference with the RA itself.  What I find so interesting is that the research I have done on diets for RA, they all say, it's proven, it's tested, but I have not found any actual proof.

“There are different theories behind certain diets,” said Kare Hagen, the lead review author. “There are some reports showing that food allergy or intolerance is present or even common in RA patents.” However, she said, “No body of evidence exists for dietary intervention for RA.”

Read more:No Proven Role for Diet in Treating Rheumatoid Arthritis - Arthritis -Dieting -http://www.health.am/ab/more/diet-in-treating-rheumatoid-arthritis/#ixzz1kurrm6ts




I have found no proof that a gluten free, sugar free, or any other diet improves the symptoms of RA... Also I have found no proof that alternative therapies improve symptoms of RA.

Rheumatoid Arthritis has no known cause and no known cure.  One thing to consider is that if and when we are put on immune suppressants it is in order to stop or slow down our immune system.  Why is that important you might ask?  Well because our immune systems are the very thing that is causing our problem.  If you are going the alternative approach and improving the way your immune system acts, then are you really helping your case?

I am glad that so many people take in upon themselves to try and improve the condition they are living in.  I also think that alternative therapies and medications are great, but not at the risk of your health and mobility.  If you want to try an all natural approach to your RA that is fine great even.  Although I would behoove anyone to take a measured approach.  If you want to do this, get together with your medical team.  Let everyone know what you are doing and KEEP AN EYE on ALL your blood levels.  From experience I know that damage can be done without pain.  I have an entire wrist that is basically useless, and never once before the damage was done did I have pain or noticeable inflammation of any kind in that particular joint.  Our bloods let us know if there is inflammation we can't see.  Our Rheumatologists do more than write scripts for us.  They do joint counts and they keep track of how active we think our RA is,  and how active our bodies tell them it is.  No good Rheumy goes by bloods alone, just like no good Rheumy goes by what we say alone.  That is how it should be.  If we have pain, and our RA appears to be in control it is time to start looking at other possible scenarios.  Autoimmune disorders tend to run in packs.  Personally I have 3 known disorders and migraines to boot.  NEVER should you discontinue the use of your medications because you are fed up with them, or because you think you know better than your doctor.  I think many times we just don't feel that our doctors are "hearing" us.  If that is the case then it is time to have a frank conversation with said doctor.  Never should you leave the office feeling emotionally like you have not been listened to.  If your doctor does not like the idea of what you want to do, see if you can compromise.  If they really just don't want to listen then it might be time to change doctors.  The thing is that quite a few of the all natural treatments can do good, but if implemented in the wrong way they can be bad as well.  As a young adult I went to a church once where a man who was in remission from cancer started supplements.  He did really well for a while, but in the end when he stopped the supplements he had no immune system to speak of.  He ended up in a worse position because instead of consulting a professional he did it all himself.

I have to say I have fallen prey to the "miracle cure" fads.  I heard that so and so stops it in it's tracks.  yes it seemed to, but ultimately didn't.  There is a reason we are told to wait 6 months before we decide a medication has failed.  That is because things take time.  It takes medications a while to get into the system and work.  If you aren't willing to give it time, you won't get any results.  It also takes time to see if an immediate improvement from an alternative therapy will continue.

It bothers me beyond belief when people tell an RA patient what they think that patient should be doing. If they don't have it, they don't have a clue what we go through on a daily basis.  It is our disease, our pain, and our decision.

The thing is the same thing applies to our daily lives and interactions with our friends and families as with our medical teams.  We should never leave a conversation with a friend or family member thinking sheesh they just don't get it.  We should put up boundaries, and make the family and friends adhere to those boundaries, because they are important for our health.  We need to find our ways to cope with our conditions.  It is important that we are okay with the decisions we make.  That is why I think the online support groups are so great.  Anytime we have one of those, "You should be doing this" conversations with anyone you can at the click of a mouse be with friends.

I think what I am trying to say is that you should feel empowered by the decisions you make.  We should never question ourselves.  We make the decision that is best for us at the time.  We can only make decision based on the information available to us at the time.  Don't question yourselves, yes you may make a decision that does not ultimately work out, but you made that decision because it was best for you at the time.  Never let anyone make you question yourself.  You are your own best advocate and that will never change.  No one will ever be as invested in your health as you are.  Learn what you need to know and stick to your guns.

Orencia

My experience with Orencia is ongoing.  SO far I have had a good response.  At my first review appointment my numbers were through the roof, but I was sick at the time and was expecting that.  So after my last blood draw, my numbers are currently pretty good.  My last CRP was 17, and my ESR was back within normal range.  Those are the only two I will mention because here in Australia they are the two that are tracked by Medicare for the government to provide my medication for free or at a heavily discounted price.  Currently since I will be going back to the hospital to get my infusions it will be free.

I have had few if any side effects from Orencia.  Sometimes it is hard to tell if something is a side effect or an actual symptom of my RA, Fibro, or Meniere's, oh lets not forget the Migraines and the medication induces Hyper Tension.  SO yes there are times I have been nauseated or felt a bit yucky or dizzy, but I can never be sure why.


One thing I can say without a shadow of a doubt.  If in Australia and in NSW I would NEVER recommend the Orencia Home Infusion Service.  I signed up with it back in May.  It took them several weeks/months to find me a nurse.  When they did my first infusion with them was still over 3 weeks late.  I had requested that my infusions be done on Mondays.  My Husband has worked out a special schedule at work where he has every Monday off.  Since I never know how I am going to be doing after an infusion I try and always schedule them on Mondays.  Well the first nurse this program got for me did my first infusion on Monday, but refused to do anymore on Mondays.  She said she worked.  That is all well and good, but I didn't request this. So she told me that she would do all my infusions after 3:30.  That way if I wasn't feeling well afterwards I wouldn't need to go anywhere, cause the kids would already be home from school.  I agreed but not happily.  SO my second infusion with her was 3 days late because she refused to come on any day but Thursday.  After that they found me a new local nurse.  Still with my third infusion it was again a week late.  I was told "You have to be patient, it is the holidays."  I explained that, that was all well and good, but my health was my priority, and my husband would very likely have to take a week off of work because I would be flaring badly that extra week I was waiting.  I was more than a little unimpressed with my second nurse.  First she wouldn't wear gloves to do my infusion.  Most people probably wouldn't have a problem with this,  but I did.  Second she was just rude.  Third, after my daughter accidentally yanked my IV out of my arm, she tried to shove it back in.  Lets just say that infusion was not a very fun experience.


My Rheumy was more than happy to let me return to the hospital to have my infusions after I explained to her everything that happened.  I was doing some research and discovered that if you go up to 56 days between infusions then your body can start to build up antibodies which will render the medicine ineffective.  Thankfully I never went that long.


 I added a few pics of my second hospital infusion.

 

  

   

Cimzia

My experience on Cimzia was a bit forgetable.  I really don't mean that in a bad way though.  As it turns out after I was told I couldn't take Actemra anymore we were at a bit of an impasse.  According to the rules of Medicare for biological drugs in Australia I was only going to get 2 more chances that the government was willing to pay for.  It just so happened that at the time I came off the Actemra and was looking for a new drug Cimzia started a program in Australia.  The makers of Cimzia were fully expecting the drug to be put on the PBS within 6 months.  So anyone who signed up before a certain time would get to trial the drug while waiting for it to make the PBS.  The advantage of this trial was that the manufacturer was going to provide all the shots.  Then if you responded well enough Medicare would take over paying for the injections. It was a fortnightly injection and was to be honest packaged in a much more RA friendly way than either Enbrel or Humira. I put photos of the actual kit Cimzia sent to me for the injections.  The pic of the syringe is how it actually looks.  I was able to get the top off of the injection and inject with my RA riddled hands.

I can't remember any overly apparent side effects from Cimzia.  I got headaches and muscle aches.  Basically all the things I already had because I have RA and Fibro, oh and the migraines and other stuff as well.

Kit sent out by Cimzia

I did respond to Cimzia, better even than Enbrel.  It hurt less than the other self injections I have done.  It is a good drug that did show positive signs for me.  I remember that after 6 months my CRP dropped down to 15.  For me that is a really good response.  Especially considering we weren't thinking a TNF Blocker would work at all.

 My Rheumy though now has her sights set on remission.  She had started to think that was impossible in my case, but since the Actemra did put me into remission she knows it is possible now.  At the same time that she ordered the Cimzia she started petitioning Medicare to get Actemra removes as one of my 5 choices.  I never actually failed it, and because of that she felt I should not be disadvantaged by having it remain as one of the 5 fails.

So I don't have much to say about Cimzia overall, but I didn't have a bad reaction and experience with it either.
http://www.cimzia.com/