Symptoms and looking for a little help!

I decided to do up a list of the symptoms I have been experiencing on a daily basis since June 2011. Since the doctor doesn't think I have RA and suspects I have Fibromyalgia but is not certain, I was hoping someone here could help with any thoughts so that I might be able to bring up some possible ideas at my next appointment in November.

In the mean time, I am making appointments with a highly recommended consultant at The Health Basket, a health store in Cole Harbour. He is known for helping people treat diseases naturally, and I hope he will be able to shed some light on my issues. I am also going for a Bio-Pulse Scan at Casaroma's(Info on Bioscans here) tomorrow, and will post how that goes.

With that being said, here is my (fairly long) list of symptoms. I really appreciate any input here!

·         -Pain in fingers, particularly index fingers

·         -Pain all over, comes and goes at different degrees throughout the day

·         -Sudden feeling of extreme tiredness, like energy has been zapped

·         -Feels like I have a constant flu(minus nausea) with body aches

·         -Pain ranges from 2-8 on a daily basis, changing without any indication

·         -Stiffness in fingers, mostly indexes

·         -Stiff when I sit still for too long

·         -Pain when I sit still for too long or move around too much

·         -Index fingers feel weak, hurt to use

·         -Pain in elbows comes and goes

·         -Wrists sometimes hurt, and when I put too much pressure on them extreme pain on occasion.

·         -Index fingers pop when they bend, painful

·         -Shoulders(mostly left) grind and is painful

·         -Knees ache, above the knee, beside the knee

·         -Ankles and feet hurt

·         -Big toes ache

·         -Sensitive spots to touch

·         -Shock-like pain on forearm occasionally, usually right forearm but sometimes left

·         -Tension headaches

·         -Anxiety, emotional

·         -Constantly feeling cold, usually have to have a blanket over me when at home even when it is hot out

·         -Wake up feeling unrested, regardless if I have slept 4 or 12 hours.

·         -Painful to hold a pen in my hand when I write one line.

·         -Hurts to brush my hair

·         -Hard to do up buttons, zippers, open bottles, use can openers

·         -Occasional shooting pain through the joint where thumb and wrist connect

·         -Can be hard to get out of bed in the mornings, stiffness and pain related

·         -Cannot use the bathroom as easily as before(number 2)

·         -If I bump my hand or knee on something the pain is intense and lasts

·         -14 of the 18 trigger points for fibromyalgia

·         -Sometimes have trouble thinking clearly and focusing

·         -No RA factor in blood work or anything showing auto-immune disorders. Checked for Lupus and nothing came up abnormal. No sign of joint damage or RA in hands. No inflammation indication in blood work.

·         -I constantly bump into walls(clumsy I know), I was clumsy before but it has gotten worse in the last few months

·         -Get words mixed up several times a day

·         -Memory has become worse since June, although this could be caused by the marijuana or the pain.

Fibromyalgia and Doctor update

I am so beyond confused right now that I don't know what to think. I have been believing that for the last several years I had RA. I just got back from my doctors appointment and according to my xrays and blood work I do not have an active condition of RA. My blood work showed no RA factor, no inflammation and my white and red blood cell count were all fine as well. My xrays showed no sign of joint damage or inflammation.

He said that I may have RA, but it is in remission. But if that is the case why am I always in so much pain? I don't remember the last time I had NO pain. So we kept talking, and I mentioned I feel like I have the flu when I have a bad flare up, like I hurt all over. So he started to press on a few points to see if they hurt, and most of them did. He(by the way, 'he' is the doctor) said he believes I may have Fibromyalgia. He said my symptoms all match up and that would explain why I am in so much pain on a constant basis.

I am so confused...I don't really understand what is going on. He gave me a few pieces of paper to read and told me to do some research because there isn't much he can do other than prescribe anti-depressants, or medication for seizures to help with the pain.I asked him if me having RA in the past could have caused this, and he said that it's hard to say but possible.

I am relieved but confused and lost...I don't know what to think...

Changes

I normally look forward to change and try to embrace it at every possible moment. Change brings challenges, excitement, and opportunity. Change can also bring hardships, pain and mixed emotions, but it's important to remind ourselves that through these moments something positive will unfold.

Right now there is a lot of change going on in my life, and although the change is positive for the most part it is generating some stress. My boyfriend has started college this week and is also working, so we see each other very little now. I have been having flare after flare and struggling to do zippers up, for some reason I am having trouble grasping the zipper and applying enough pressure to zip. My best friend and her boyfriend left for Winnipeg yesterday, and are planning on living there for a few years. I went from having the two most important people in my life close to me, my boyfriend living with me and my best friend literally just down the hall...to hardly seeing my boyfriend and I don't know when I will get to see my best friend again.

I know it's silly, but I am also worrying about my boyfriend meeting a more able, thinner, beautiful woman at college...we have a great relationship and have faced a lot together. I feel bad that I am not able to be as energetic, fast and perfect like other people. I can feel myself slowly slipping into a desperate state that I am rarely ever in, a dark place where no one can hear me scream. It makes me feel like crawling under my blankets and never getting up again. But FEELING and DOING are two very different things. I have been here before, and I know that the moment I give into the temptation to curl into bed that I won't get back up. 

Add pain to the mix and I really don't want to do anything. But I can't, so I keep moving. I clean. I turn on some up beat music, dance, sing and organize. I laugh. I cry. I do anything I can that does not involve laying down in bed. And I know that I'll get through this. I will once again embrace change, I just have to see through this now.

Blood work related questions?

I'll be going for my blood work and x-rays tomorrow afternoon, and my appointment with my GP is on the 13th of Sept. I was reading over the list of things being tested in the blood work, and was wondering if any of them are routine for people with RA? I'm being tested for the following:
-Glucose, random
-urea
-creatinine
-calcium
-phoshorus
-CK
-album
-protein, total
-alkaline, phosphatase
-C-Reactive, protein
-Rheumatoid Factor
-Profile, Auto Diff
-ESR
-TSH
-Thyroxine, Free(FT4)
-Vitamin b12
-Folate serum
-Ferritin
-ANA Screen(lists a bunch of abbreviations after that)
-Urinalysis

I am also getting my hands x-rayed for signs of RA. I am slightly confused because I was diagnosed with RA when I was a teenager, my hands have remained swollen and my symptoms are still there. I still experience stiffness, fatigue, joint pain, and my index fingers have the swan neck deformation. Why can my GP not just refer me to an adult rheumatologist instead, or does he need documentation before referring me?

Also, does anyone have any idea how some of these things in the blood test could relate to RA? I'd really appreciate any input, I don't exactly have a good relationship with my GP...Thanks

Positive thinking??

I have always been the type of person who constantly looks for the positive outcome in any situation, the person who never loses hope. In a way this has really helped me through the rough flares in RA, but I am wondering if I may have been slightly delusional about my entire outlook on my situation.

My positive thinking mind assumed that one day, this will all just go away. No more pain. No more inflammation. No more stiffness. No more RA. I had it in my mind that this, too, would pass, just like any illness I have had. I outgrew my asthma, and I guess I was thinking I would eventually outgrow RA, too. Well, it seems like my perception on this is slightly off.

I've had RA for close to 9 years now. I've had moments of remission where I was convinced that I would never again see or experience the pain, inflammation and stiffness(as well as other symptoms of RA) ever again. But like my mother used to tell me 'Never say Never'...wow, I should have listened!

I am beginning to see that no matter how much positive thoughts or hope I put into my RA, it is coming back, and getting worse each time. This year is by far the worst year I have ever experienced in terms of pain, although this year has also had a lot of stress due to the loss of my father, a serious issue in my relationship earlier in the year and family issues. So stress plays a role. I know that, and you probably do, too.

Even though there is a quiet voice in my head that reassures me that everything will be okay and work out exactly as it is supposed to...I can't help but hear the other one that says the pain will not go away. Even if it does, I know it will be back at some point. It always does.

Defeated

I haven't posted for the last little while because, to be totally honest, I was doing great! I had a few days where I was feeling stiff and in pain, but other than the usual morning stiffness that I have become accustomed to, I was feeling pretty darn good.

I have been continuing to smoke and eat marijuana and see positive changes. In the back of my head, I assumed that my RA had gone into remission, and that I wouldn't have to feel the pain that I had been feeling before starting to smoke, ever again.

I was very, very wrong. I noticed a few days ago that some of my joints were becoming harder and harder to use. My hips, knees, ankles, hands and wrists were stiff and required a little bit more patience than normal. My fingers were becoming harder to use, making me feel clumsy and causing me to drop things, or not hold them at all. I thought that it had to do with the hot, humid weather and lack of sleep.

Today I feel like my RA was waiting silently in some distant part of my body for the last month and a half. Maybe it was waiting for me to feel like I had won, and I truly felt like I had defeated this. That I would never have to feel the constant pain again. That I would never, ever again have to let RA interfere with my life.

Today it feels like my world is crashing down on me all at once. My fingers and wrists are visibly swollen and hot to the touch. I hurt, and I hurt a lot. It feels like I was given the best thing in the entire world and then told that it would never really be mine. I feel defeated and tricked by my own body, my enemy and my friend. I just want to curl up into a small dark hole and believe that I can hide from RA.

Maybe I shouldn't be complaining, and I truly apologize if I have annoyed anyone...I just had to get this out.

Aha! A theory

I think I may have found my trigger, or should I say 'my most-of-the-time-trigger.' This is great, but it also causes a few interesting questions. Let me explain and see what we can come up with.

So my latest flare-up had been pretty intense on my level of flare-ups, and definitely being the longest and worst since I was diagnosed with RA. My pain was constant. At my worst I struggled to get out of my bathtub and slept/rested most of my time home. While at my best I was able to make it home with enough energy to make super and stay up later to spend time with my boyfriend.

Looking back, I now realize that I had started to feel better when I listened to my body. Most days I just rush through, doing what needs to be done or stressing over one thing or another. I have the normal stresses at work and home, and this is what made the light ball turn on: and I have my "explosion" moments.

These moments are usually caused when I try to shove responsibilities off(causing more stress because I am thinking about them and worrying) as well as suppressing certain emotions. I'm not saying this causes RA or fixing this will stop flare-ups, I'm just saying that I believe my flare-ups may be triggered by stress.

I have been feeling pretty good for the last week. Actually, I have been feeling great(great enough that upon waking on my days off,  I've been doing dishes, clean, cook AND bake all before noon). Then yesterday evening I had an argument over nothing - the stupid, pointless ones usually had with your significant other ;) - and by the end of night I was feeling like total crap. This morning I was in pain and I half limped home from work. My shoulders are sore again and I am so totally exhausted.

So, there are a few other things that might possibly lead into this theory of mine.I didn't sleep well the previous night due to a howling cat outside and the guy above my apartment seems incapable of getting up in the morning without us banging on our ceiling so he might(after half an hour of listening to the horrendous sound of the alarm clock) get up. Food. I don't feed my body enough of the good stuff. I know I need to focus on better nutrition, and when I eat sugary foods, junk and lots and lots of carbs, well, there's little room left for the good foods. So diet is also very important.

All in all, my conclusive list of what I believe to be my RA triggers are:

• Stress
• Suppressed emotions--especially anger
• Sleep--bad sleep = added fatigue and more stress
• Food--we are what we eat
• Diet--same idea as food

Doctor....

I had my doctors appointment today, and the end result is blood work, x-rays on my hands and a prescription. I haven't been in to see my GP(general practitioner) in almost 4 years, so he said he would have to pull my file to remember the details of my previous diagnosis. He said he is interested to see what my previous x-rays are like compared to what these new ones will be, to see if there has been any damage.

So I'll be on Naprosyn two times a day, and if that doesn't help he said I can increase it to three times a day. I have to admit that I am kind of upset about being on medication. For those who don't know me, I have a huge issue with taking things that are man-made. Call me a conspirator, or crazy or whatever you would like, but I just can't see how something that is supposed to help your condition but just adds more problems to your list of conditions is supposed to be good for you(did that make any sense???).

I feel like I am being defeated, one little step at a time. Yes, Naprosyn doesn't have a huge list of side effects, but it still has some. I just wish that RA was something that would fix itself on its own or be fixed with something as easy as a supplement or a diet change or exercise or yoga or meditation. I feel like I am turning my back on my own ideals and beliefs, but I don't know what other choice I have. On the one hand, I don't want to live in pain for the rest of my life and on the other I don't want to take medication. Maybe I am just seeing everything in black and white.

Visualizing RA

Today was a rough day at work where I spent most of my day limping around work. I was surprised by how much pain I was actually in, when this morning the pain was around a 2 on the 1-10 scale and I thought I was going to have a great day, but by 9am it had been closer to a 7.

When I got home, I limped to the bedroom to rest and found that my boyfriend was still home. We laid in bed talking for a little while, and I have to admit that I was kind of hurt by one of the things he said.
My boyfriend is a very well meaning guy, who has been incredibly supportive and, well, awesome. He has good intentions, and believes in the body's natural abilities to heal itself. He asked me why I don't just meditate and ask my body to heal itself, to take away the pain.

This sounds like a great idea, but what in the world would make him think that I don't already do those things? I've tried meditating, most nights it is the only way I can quiet my mind enough to go to sleep. And as for asking my body to heal itself from RA and to take away the pain, well, of course I have tried. I think he gets this idea from several stories of people who have cured diseases like cancer by visualizing the disease being taken away, like in one example a woman with breast cancer visualized a white dove taking a piece of her cancer away each night.

One of the hard things about this is that cancer is usually in selected spots in the body, unless it has progressed to the final stages and is throughout most of the body. So in a way, it can easier to visualize a white dove taking away a piece of cancer each night. But how do you visualize a white dove taking away joint pain, or inflammation or correcting the immune system, when all of these things effect your entire body and not a localized spot? How do you take away something that you need(immune system)? 

So now it has me thinking, wondering how a person would picture their RA? I have trouble visualizing mine. I don't know how to remove something like this...It's not like there are mutated cells in my body causing this.

When you try to visualize what your RA looks like, can you?

Medicinal Marijuana For RA?

Marijuana has always been a touchy subject for me. I have to admit that I had my experimental times as a teenager(but hey, who doesn't?) and was turned off the idea of marijuana. Yet when I sit and think about the possible side effects/long term effects of the prescribed medications vs marijuana, I have to admit, the idea of the green plant doesn't seem as bad.

I am not saying that marijuana has no side effects, because it does. It just hasn't caused any deaths, unlike NSAID's. I was interested to find that a mouth spray developed to treat people with MS called Sativex is a cannabis based drug that has also been shown to be effective in managing pain and inflammation in people with RA.

I wanted to take a quick look at some of the possible side effects of both Sativex and we'll use a generic NSAID: Nu-Naproxen.I chose Nu-Naproxen because it was the medication I had first been put on when I was originally diagnosed with JRA.

The possible side effects of Nu-Naproxen are as follows:

• abdominal or stomach cramps, pain, or discomfort (mild to moderate)
• constipation
• diarrhea
• dizziness
• drowsiness
• headache (mild to moderate)
• heartburn or indigestion
• itchy skin
• lightheadedness
• nausea
• skin rash
• spinning sensation (vertigo)
• vomiting

Above list of side effects is from http://chealth.canoe.ca

The possible side effects from Sativex are as follows:

• abdominal pain
• burning sensation in the mouth
• constipation
• diarrhea
• dizziness
• dry mouth
• flushing
• forgetfulness or poor concentration
• headache

• increased appetite
• mood changes
• nausea
• sore throat
• soreness or stinging sensation in mouth
• tiredness
• trouble sleeping
• unusual taste in the mouth
• vomiting
• weakness

The above side effect information was found at http://chealth.canoe.ca

Both of these drugs have similar side effects, although the Sativex has several more side effects than Nu-Naproxen. Both of these drugs can also cause problems for people who have heart problems, or issues with other organs such as kidney or liver problems. The one thing that makes me personally believe Sativex would be better than Nu-Naproxen is that stomach ulceration, bleeding and perforation can occur at any time in patients that are using  Naproxen, and this is not an issue with Sativex(although possible intoxication is an issue).

So when it comes down to it, I guess it is just another drug to choose from. I would love to know if anyone has used medical marijuana(or a drug made from marijuana like Sativex) and how you did with it.

Thoughts/update

Yesterday was a wonderful day and I was beginning to think that my flare-up was coming to an end. Although I was still in pain, the stiffness didn't last longer than an hour or so after I got out of bed and my energy levels were through the roof! I was goofy, laughing and felt great. By 8:00pm or so Sunday night I was starting to feel tired again, and the pain was getting worse.

Today I feel like crap(pardon the language). The stiffness has lasted most of the day and my energy had been okay in the morning, but now I am totally wiped. I had a lot of things I had wanted to get done today but am too tired to even get them started.

I heard back from the Arthritis Society today and was told the only way I could start seeing a rheumatologist again would be to have my doctor refer me. Unfortunately, my doctor can take up to 3 months to get in to. I haven't been there in years, but am hoping they might be able to squeeze me in soon. If not, maybe getting a new doctor will be on the to do list.

I'm concerned about how long this flare-up seems to be lasting, and how bad it is. The last two flare-ups have been really bad, but I don't know what that could possibly indicate. I feel defeated and upset because this isn't something I can control, and I am so used to being in control of my life. It bothers me that I am willing to give into medication that in the long run, may end up doing more harm than good. I don't know how people live like this every day. I just keep telling myself to hang in there and it'll get better, the pain always improves to some degree or another. Some days the idea of it getting better helps, and days like today, it doesn't. In the end, we will all make it through.

Is there a third option?

Maybe I am just having one of those days, but I feel like I am having a moment of realization. I am seriously beginning to wonder if RA can be managed by diet, exercise or any other non-medical form. Yes, I know that some people respond well to changes in their diet, or increased exercise, ect ect, while others respond to medication. I am just wondering where do I sit between these two options. Is there a third option?

I don't want to go on medication for the pain or to help prevent any further problems caused by the RA. I mean, when I sit and think about all of the "possible" side effects, is it really worth it? What would happen if I just decided to flat out say no to all possible medications for the rest of my life? Is my liver, stomach, kidney or other vital organ worth living pain free? Does medication really help or just temporarily off set the problems associated with RA?

So where do people like me sit? People who don't want to take medication but aren't really seeing a permanent change in RA with diet change?

One Year Aniiversary Reflection

Tomorrow marks the one year anniversary of me starting this blog, and let's be honest, I know I haven't been writing as much as I had originally planned!

The last year has truly been a learning experience, and although I haven't really come any closer to finding a way to manage my RA without the use of medication, I still believe that it is possible. Looking back over my posts I have noticed how negative I feel now compared to how I was then, so I think I'll start ending each post with a positive thought. After all, how are we supposed to go about our day when we look at everything with a negative twist. It kind of takes the joy out of living!

I've focused a lot on diet and food that could be possible triggers to my RA, but I have been shying away from the one diet change that I think would probably benefit me. I would love to have the strength to cut dairy and gluten from my diet, even if it was only for a few months and then to try them again to see if it might be causing some of my flare-ups. I guess I have been afraid to try, or afraid that I might actually have a reaction to these things. To be honest, I love cheese. And bread. I eat rice pasta sometimes, and it isn't too bad, although the texture is a little odd. I think that it is something I need to try, though.

So the positive thought for this blog is....
"Once you replace negative thoughts with positive ones, you'll start having positive results." - Willie Nelson

Possible RA Flare-up Triggers?

It's been a while since my last post, but not much has changed with my condition or any new information that I have found. I am no longer on a reduced meat diet nor vegetarian, and have found that overall, my flare-ups are still about the same.

For the last few months I was doing great. I have been going to the gym and eating healthy on and off(even though I know I should be doing it regularly). I am not sure if maybe my RA was in remission, or if I was doing something that had been helping to keep inflammation down and the pain to a minimum.

The last two weeks, however, my RA has been making itself known. I think there are a few contributing factors to the recent flare-up, which could be:
a) It has been raining for the last 18 days, with several low pressure systems(I live in Atlantic Canada and this is our wet season).
b) I have been eating a lot of dairy lately(mostly cheese).
c) I have been eating/drinking foods and drinks higher in sugar(pops, chocolate, cookies, ect)
d) I have been eating more starchy foods lately(white pasta and white bread)
e) I haven't had a flare-up in a while

Do you find any of the things listed can cause flare-ups in you? I am not sure if any of them have led to my current flare-up, but it is always a possibility.

I have noticed that the last few flare-ups that I have had have also included a lot of pain in my shoulders. There is also a spot on the back of my neck/spine that is very painful during my flare-ups, but I am not sure if that is due to the inflammation or not. It is the spot directly below the neck between the shoulder blades on the back of my neck, do you know where I am talking about?

I am not sure if I may have the RA in my shoulders, and would like to get in to see my doctor but I DO NOT want to be put on any form of medication. That is simply not an option for me.