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TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 4/5/2009 9:48 AM (GMT -7)   
Hi, I just wanted to take a second to complain, and since everyone here is soo nice and understanding I thought I would type in here...
I may not even publish this, but its my way of venting today.  I have posted here before, and know some of you a little.
I am 34 year old mom of 2 little ones,and stepmom to two teens.  I LOVE to go out Dancing with my hubby.  We go usually once a month to a local place with our adult family members  and friends to Karaoke.  Well I dont sing but I can't help getting up and dancing....I have sooo much fun. But I pay for it the next day or sometimes 2 or 3......  I hurt soo much in the morning, even my fingers hurt and WHO dances with their fingers ????
I am not old, and really wish my body would realize this and not feel old.  I know arthritis is not just for older people, but know what I mean?
The doctors havent gave me a 100% diagnosis but they are like 95% sure its RA.  I fear my future.  I really hope it doesnt progress to quickly.  I hate being cold and achy.  I am stubborn and go out monthly only to pay for it . I still like to go for long walks too, but pay for that too.
I want to get a treadmill so I can go for walks daily even if the weather is not co-operative, but have to wait as like with alot of families the money isnt there to just "buy" one.  I rather spend it on my boys and I usually just say one day....
My hubby is super supportive, its not that at all.  He will be by my side no matter what, even if it means wheelchair in the future...but I'm just having a downer day.
Thanks all for listening to a sad sap.
Have a super day. Its sunny here for a change so maybe I will go outside for some fresh air.

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 4/5/2009 8:08 PM (GMT -7)   
Hi TayIsa, I can't remember what drugs you take but I can really relate. I just never seem to stabalise everything helps but I just move from one set of symptoms to another. Humira helps enormously and mtx certainly backs it up but still my thumbs are getting progressively worse, my hips hurt and now my lower back and feet have decided to play up. I'm still active not crippled just have to keep popping pain meds to keep going, if I walk on the flat I'm not too bad as long as I don't go too far but hills and stairs flare up my hips and lower back. If I drink a glass of champagne it seems to deaden the pain and I can dance for a while but I also pay for it the next day. I think go for it. We can't let this RA stop us from living, I hate the fact my kids can't remember me playing soccer with them when I did for years. Do what you can while you can. Are you on humira? Seems to be a wonder drug for most people took my inflammatory factor down from 300 odd to 8!!! It was brilliant in the beginning. Write again, Jacqui

TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 4/6/2009 5:12 AM (GMT -7)   
Golito, thank you for your response.  I am currently taking Plaquenil 400mg a day, and I take tylenol 3 with codiene for pain.(when needed) which seems to be alot lately.
I agree we might as well do what we like to do now and possibly pay the next day, because later our health may not permit anything ....
I went outside and played tag with my 3 year old the other day....HE had a blast! and I was just "wasted of energy" later on.  But I LOVED playing with him and hearing him laugh, so feeling drained was worth it.
I go see my rhuemy on the 21st and maybe she will change my meds.
Have a great day, and thanks again. I was having a really downer day and really apprecitate someone else knowing how im feeling.  Not self-pity , but definitly frustration.
I have to go get ready to take my other son to school now. Its snowing out again...so much for spring lol.  I have to go clear my van off...ugh. LOL

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 4/6/2009 6:31 PM (GMT -7)   
Hi TayIsa, sounds like you should ask the rheumy about stronger meds. I know methotrexate works well with plaq, but the biologics are brilliant if you can tolerate them. Initially I could actually run again, the swelling and pain completely gone... so ask about the wonder drugs. They can make a huge difference to your quality of life. Let us know how you go with the rheumy. Regards Jacqui

TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 4/7/2009 5:19 AM (GMT -7)   
I will definitely let you know what rhumey says/ does after my next appointment.

Cordelia-Mary
Regular Member


Date Joined Jul 2009
Total Posts : 20
   Posted 7/23/2009 1:00 AM (GMT -7)   
Hi, your heading 'hate this' made me look. After seeing 'MRI anyone?' I am aching everywhere from a flare and now have to phone and cancel anything I was to do today and that takes an effort. Someone else on here was saying that some people don't understand and 'get it'. If you could offer what we have to them like a pretzel they'd say 'No thank you.' So why on earth do they seem to imagine when our lot was offered that we said 'Oh yes please, thanks!' Like we're nuts or something. Letting go on here is like finding an exclusive club where we can all be executive members, sure of an understanding and friendly welcome. I live alone with RA and, too, am worried to death about being faced with a wheelchair but am beginning to realise that as sure as night follows day, SOMEONE on here will understand when it happens and will be there for me. If I have helped you to know that someone you probably will never meet, cares about you and how you feel today, then this whole set up on here is worthwhile. TayIsa, I used to be told when I wanted to complain, write it all down and then throw it away - don't do that, write it down on here and someone, somewhere will totally understand and respond. Take care, Cordelia.
Cordelia-Mary


TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 7/23/2009 6:43 AM (GMT -7)   
Thanks for the support Cordelia-Mary, and Golitho.
I cannot really say that things are getting much better.  I have started a part time job this summer.  (Not really a new job, I worked at the grocery store 6 years ago before my children were born and before this RA started.  I worked there for 16 years so its all old hat for me.  I am a cashier so there is alot of standing and lifting and using my hands.  Also our store offers "carry-out" for the groceries customers can not carry.  Its kinda ironic that me with RA carries out for the older arthritic customers. lol)  I automatically take one or two tylenol 3 before I leave for work.  I tried a few time to go in without Pre-medicating...but ended up taking meds when I was there for under an hour anyway.
My last visit to the rhuemy left me no better off then before. She told me my MRI showed nothing to bad, but that my back is really messed up. Therefore she cannot "officially"say its RA. But in the same breath she said keep taking your 400mg of plaquenil daily.  Also she sent me to my family doctor to get more meds.  At my family doctor she explains in her way that they are confused as to what exactly to call my illness.  That all signs say RA but there is nothing "concrete".......so they are just going to treat my pain until a sign shows itself.  So now I am on my 400mg of Plaquenil, 1000 units of vitamin D, and 25mg of amitriptyline daily, and tylenol 3 for pain. Also my family doctor suggested trying advil for pain instead of the tylenol 3.  Well if I just have a regular headache the advil helps but the my body aches they are like taking skittles or m&m's.
Plus this summer has been alot of rain where I live. and as you know that doesn't help much.
But I try my best to live each day as best as I can.  I am going to bed early alot.  I am usually really tired alot.  But I always wait until my children are in bed so that I am not missing out on any mommy-time.  We took them to the African Lion Safari this summer, as it is a place you can drive your vehicle thru to see all the wild animals up close.  ( We were going to go to Toronto Zoo, but there is ALOT of walking and we thought it would be too much for my 4 year old, and probably myself , to walk.)
Thank you soo much for caring and really understanding my plight.  My sons try to understand too, but it just hurts my feelings cry when my 6 year old says "Mommy are you hurting today? cause I want to snuggle." MY obvious answer is "NO , I am not hurting today" just so that he will snuggle and not feel bad about hurting me.  I have always told them that whenever they want  a hug or kiss or snuggle that I'd LOVE too!! and to just ask or do it.  And I refuse for RA to stop that promise.
Hope you are doing well.  Have a great day. and Thanx again. :) :-)

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 7/23/2009 7:47 AM (GMT -7)   
Hi Tayisa, I do understand your frustration! I know that I push myself most of the time when I shouldn't and then the next day or two it can be so painful.  I know you want to get a treadmill, and I have one, it was purchased before I got RA, back when I could run on it without any thought and now I consider it a huge feat if I can manage a mile and still get out of bed the next morning.  I'm 38 now, and I can still remember being energetic and active until my oldest was in 7th grade, he is now going to be a junior in highschool, almost grown and my youngest will now be in 7th grade, sometmes I wonder where the time has gone, and it seems all they remember is my RA!
 
I'm glad to hear you are on the Plaquenil, it does work. I took it for a couple of years and when I had to stop taking it, that is when my fatigue came back full force and I've never found anything to combat it, like the Plaquenil did. At this point, I'm only on the MTX, the full dose, and when it comes time to take it, if I'm late a few hours, my joints are telling me its time to take it.  A few times I tried to cut back on them just to see how I would do, and it didn't go well, and I ended up calling the rhuemy to get a Medrol dose pack, I was in so much pain.  I just wanted to see if I really need all 8 pills, needless to say, I guess I do! Now I always take my MTX and I do have Darvon's on hand but I have found they barely take the edge off of my pain if I'm in a heavy flare.
 
I'm sero-negative, so somewhere in my mind, I keep waiting for this to go away, my rheumy says this will never happen, however, I'm hopeful that at some point I will wake up one day pain free.  My husband just shakes his head when I say this. 
 
My rheumy appointment is tomorrow and the last time I was in, he offered to help me with the handicap placard, but I told him it wasn't neccesary.  My 12 year old daughter is aware that this offer was made, so since then, everytime we have went somewhere, and I have been in pain, she has mentioned that we could have parked closer, if I had my placard....and tells me I really need to tell my doctor I need one *sigh*...
 
Your kiddo's sound so sweet, asking you if you hurt, they love mommy and you are right,  you don't want to miss out on any quality time with them.  I'm not sure how long you have been seeing your rhuemy, but when I first started out, I had to try every NSAID under the sun, and then Plaquenil, and I was on that alone for quite awhile before the MTX was added because the Plaq was not enough.  A good rhuemy will treat your symptoms, please remember that, and it never hurts to get another opinion.  At one of my appointments, I finally told mine that on a scale of 1-10, my pain level had reached a 10, and that I was no longer taking the stairs but using the elevators.  It was then that I started the Enbrel.
 
I hope your next appointment goes well and that you can try a different medication.  Sometimes it is about getting the right "cocktail" of meds.
 
 

TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 7/23/2009 8:33 AM (GMT -7)   
Momto3 thanks for your post.  I really do want to get a treadmill.  But they are sooo expensive and I cannot afford a new one.  I have asked around and have been looking for a used one that isnt going to cost a fortune.  I love to go for walks, but the weather is usually my excuse not to walk, or I'm sore... I thought if I had a treadmill I would eliminate the "allowing of excuses".
I am 34 and have had my symptoms since around February of 2008.  They just suddenly appeared.   My family doctor last time I saw her actually told me that she hopes whatever my illness is will just disappear like it just appeared.  I am actually not impressed she would say that. As much as one hopes their pain will just disappear, I was frustrated a doctor seems to wish that rather than find a way to cure it.  I dont want to hold onto that hope as it doesnt seem to be a realistic ending.  I dont want to face a future of pain and possible disabilities but want to "keep it real" if ya get what I mean.  A lady I work with has a type of arthritis,(not RA but not sure what kind) and her finger joints are all swollen.  She is also a cashier.  She will get me to do things she cannot do with her inflammed joints, or gets me to carry heavy things. The whole time I do it, I am hoping that someone will be there for me when I get that far along.  I do pay for it later, but am stubborn and do it anyway.  I am nervous for the future, and maybe thats why I kinda get miffed at my family doctor when she seems to wish it away.
Good luck at your rhuemy appointment.  Maybe you could ask for a placard and only  use it on your bad days?....you dont have to put it in the window or park in the wheelchair zone if you dont want to. But if you had it at least you 'could' if you had to. 
((gentle hugs)) and best of luck at your appt. :-)

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 7/23/2009 8:58 AM (GMT -7)   
Hi there,
 
I started out at the pcp, because I started having pain in my knees for a few weeks.  Anyway, he ran tests for lyme, lupus, as well as some other things and didn't know what to do with me and sent me packing to the nearest rhuemy.  Initially, since I was an early childhood teacher, I had been sick with a bug, the rheumy thought the joint pain stemmed from that and would run it's course, and that was almost 4 years ago....I'm still seeing the rhuemy and it never went away. Now he uses the RA word.  I know it isn't realistic to hope that it will go away, but sometimes I wonder if I hadn't of gotten sick, maybe I wouldn't have this, and my rheumy has no answers as to why I have it.
 
It is important to stay on top of the treatment so that it doesn't progress, and my symptoms, while I do have flares, as long as I stay on the MTX, I think it has prevented it from advancing like it could have without it.  I haven't noticed too much of a change in my fingers etc.  You have every right to be miffed at your gp, she really should admit that she doesn't know how to treat what is wrong and send you on your way. Once I started seeing the rhuemy, I wasn't sent back to the pcp, anything to do with the RA was treated by him, even my difficulties sleeping since it affects my pain level, is treated with Trazadone prescribed by the rhuemy.
 
I hope you can locate a treadmill, and you should be able to find one used.  I actually find it easier to walk on the treadmill for whatever reason.
 
Hang in there, and we are here to listen anytime you need to vent!

TayIsa
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 7/23/2009 10:14 AM (GMT -7)   
Momto3 please dont take my last post the wrong way. If I could wiggle my nose and wish my illness away I would do it in a heartbeat. So I was not putting you down or saying you are wrong for wishing it gone. I was just trying to say I HATE that my doctor is basically telling me that she is wishing it gone and thinks I should too, instead of working more intently on finding a cure or at least a way to cope.
Where I live I have actually been sent to the best rhuemy there is. There is usually at least a 6 month waiting period to even get in to see her for a first appointment, and my family doctor got me in within a week. It's an hour and a half drive to go there, and is the closest area with specialists. So I dont know if going for a second opinion is worth it, when I know for a fact I am going to the best there is. (I only know that so sure, because my bosses wife is a nurse, and knows the doctors and can verify she is the best and the most active to "solve" cases.) Actually its my bosses wife that gave me some of my x-rays for my rhuemy. Was kinda nice to see a familiar face.

But anyway sorry if there was any mis-understanding and thanks again for the venting listening ear. Have a great day :)

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 7/23/2009 1:07 PM (GMT -7)   
Tayisa....Oh no! I didn't take it that way at all! I have told my own doctor that I hate this joint pain and wish it would just go away! That is wonderful that you have a top notch doctor, so there is no need to get another opinion.  Here we have a few spread out, and I'm not sure if mine is the best, but when I mention him to other doctors etc they give him much praise and he was willing to treat me "as is" :) I know, we would all be wiggling our noses wouldn't we? tongue
You are very welcome by the way :-)

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 7/24/2009 1:18 AM (GMT -7)   
Hi Tayisa and mom, I'm also sero negative but heading into my 3rd year with no relief. Tayisa I'd also ask for more than just plaquenal. I'm on humira and mtx as well as mobic but have tried many combinations. My knees are much better and some days I have zero pain, I'm prone to carpel tunnel but as both my sisters have it I may have developed it anyway!!! But overall I'm pretty good compared to what I'm like off the meds. I can work and be a mom to 3 as well, I'd honestly ask for another med to be added to try and give you more relief. Mtx despite its toxicity really gets rid of swelling fantastically. Talk to your rheumy about a change, there's a lot of us out there who have sero negative arthritis and are treated as if we have RA. Viral arthritis last ususally about 3 months anything beyond that and you're in for the long haul. Thats what my rheumy tld me anyway. Goodluck, golitho

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/24/2009 3:14 AM (GMT -7)   
golitho, is 'sero negative arthritis' another way of referring to the 'Rheumatoid Factor'? On my labs, my rheumatoid factor is supposed to be below 14, and it's 179. It's one of the reasons I'm being treated with such great care. I'm just wondering if we're referring to the same thing with a different name. Thanks. ladywriter
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety

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