Frustrated - just need to vent, ramble and get it out

jenn3

Since I was dx'd with this $#!" I've tried to take it one day at a time - not burden too many people with my aches and pains.  My husband, daughters, mom, sister and closest friend know how bad it can be on some days, but overall when I'm asked I tell people I'm doing okay.  I try to start the day off in a good mental place and go from there.  Prior to my diagnosis I had been recently diagnosed (after years of being told I was crazy) with Rheumatoid Arthritis (RH) and finally been given correct medications that gave me pain relief.  It was a wonderful time - I felt like I was 20 again.  Then........... came BC.  The good news, chemo drugs kept the pain from the RH at bay.  Anyway, first the surgery - which came with it's own pain and discomfort, then when I was feeling better from surgery came chemo - and if there was a SE from chemo I got it.  Through all of it I kept upbeat, woke up early everyday, walked (walking a minimum of 5 days a week until early December when the neuropathy was too much), cleaned house, cooked, movies, lunch, shopped during the holiday season, baked baskets of goodies for DH clients.  I still kept up with life to spite the fact that when I was alone I cried from the pain, soaked in hot baths to get pain relief and of course just took naps.  Now that I've finished chemo my RH has kicked into overdrive.   I can hardly move in the morning and can no longer open jars and buttoning my clothes is even getting tough. My hips and knees are so painful - I feel like a rusty old bike, once I get up and get moving it helps - although I'm still limping.  I can limp at a pretty good pace too .  Since surgery I have not slept a full night - I wake up on average about evey 3 hours - now a days it's from my hips and knees - nothing gets rid of that pain!  I figured, once I get my radiation schedule I'll visit my RH doctor and get a refill on the methotrexate and feel much better.  Howevever when I met with the radiation oncolgist he said I could take the methotrexate, but it amplifies the affects of radiation and suggests I don't take it unless absolutely necessary.  Okay - I'll continue taking Aleve every 12 hours for the next 6 weeks. It helps some.  He did prescribe Neurontin for the neuropathy - thank goodness, b/c let me tell you RH mixed with neuropathy doesn't feel good.  I can deal with one, but both was wearing thin.  This week I noticed the neuropathy pains, which were like sharp knives driving through my hands and feet had subsided. Yipeeee - some pain relief.  Then yesterday I noticed swelling in my left ankle - oops did I pull or tear my achilles again?  I'll have to get it checked.  Woke up this morning - both legs and feet are swollen, my ankles looked like golf balls had been inserted in the sides.  Called the dr - it's an allergic reaction- have to stop the neurontin. 

I am so tired of pain. I am in constant pain.   I've basically spent the last 6 months in pain and quite frankly - I am sick and tired of it.  Without the neurontin the pain from the neuropathy is unbearable - mix that with every joint in my body aching and swelling from the RH.  I am 43 years old, but feel like I'm 80.  I want my life back w/o pain!!!!!! 

Thanks for letting me ramble on - just needed to get this out of my system.

Anonymous

Oh Lordy Jenn, I am so sorry the Neurontin turned bad for you. I too live in pain but it is pretty well managed (have fibromyalgia plus this bloody disease). I go to a pain managment specialist. Is that an option for you? I know you are frustrated and so very tired. The stabbing pain from neuropathy is a bitch. I am so sorry and sending you lots of soft hugs and angels to cart away your pain. The chemo really triggered fibromyalgia and I just have to pray that this too will pass. SV

Anonymous

Jenn ~ I feel your pain sweetheart.  I don't have RH but I do feel a lot of pain in my joints and hips.  Was like that before BC and worse now.  But I get a little help every morinig when I wake up I take either motrin or excedrin with my coffee.  That gets me going and I loosen up for the day.  Around 4 in the afternoon, it starts to come back again so I reach for the pills again.  If I sit too long I get up limping, but ok after a few steps.  Damned that Arimidex!!.  I don't know what I would do without my Ambien at night.  Sleep is never an issue for me.  So anyway ramble anytime.  We are here for ya.

Shanagirl (Barb)

apple

you certainly do need to vent.

gosh.. wish i could help.

Bugs

Jenn, I agree...you need to vent.  AND you need to see a pain mgmt specialist.  As you know, pain wears you down.  Constant pain, even more.   Don't be silent about this and put up with it.  It needs to be dealt with asap!

Hugs!!!

kimber3006

I'm so glad you let all that out.  I hope it made you feel a bit better and I really hope you find some relief from the pain soon!

karen1956

Jenn....can you take Lyrica?  It is also for neuropathy.  Vent all you want thats why we are here.  Can you take sleeping pills?  Ambian is a good friend of mine....without it, I don't even sleep 3 hours at a time.  I agree with the others, you need to find some relief...can your doc refer you to a pain management specialist?  (((((((((((HUGS))))))))))) 

cheers247

I'm so sorry you are suffering with this pain!  Like Karen said, Lyrica may be an option for you since Neurontin is not.  I take Neurontin and tolerate it well, I'd try Lyrica if I had trouble with it.  Pain is not only physically debilitating, it is also mentally debilitating...  a pain specialist is a great idea.  I hope you feel comfortable soon.  Keep  us posted, and rant all you want!  Much Love, Jessica

Gitane

You need your sleep, Jenn.  That's a necessity if you want to build your immune system back up, and you need to do that.  I'm just so sad to hear that you are not being helped more with this.  As was said, this pain and lack of sleep wear you down.  I really hope your doctors can do something so you can get your life back.  Glad you vented here; we understand.  Hugs!

KerryMac

Jenn - I am so sorry you are in so much pain. My husband has Arthritis too (Ankylosing Spondylitis) and found good relief with Celebrex. Not sure if that is an option for you?? Have you spoken with your Rheumotologist about your options? Being in so much pain is no way to live, I really hope you find relief soon. 

jenn3

Thanks - I needed some hugs.  Last night hearing that I had to get off of the Neurontin really put me in a bad mood. I guess it's a good thing I stopped taking it, my feet and legs are still little puff balls today.  My onc has been great in responding to my pain, but I don't react well to pain meds.  Too strong and I'm sick as a dog and have allergic reactions to several others.  Therefore, I am afraid of taking pain meds, but did finally listen to them and take what they suggested the last night and slept for about 5 hours. 

I did suffer with RH before BC, but it was controlled.  However, the medication that controlled the pain so well is known to cause cancer, which the onc seems to think may be the reason I got BC (but can't prove anything) and I can no longer take that particular medication.  And.......it seems to be much worse now.  I have not had a chance to speak to the rheumatologist yet (left message), but will ask about Celebrex because I am worried about the Aleve tearing up my stomach.  As for the Lyrica - I am afraid of it because my daughter had such a bad reaction to it, but may think about trying it. I guess we're genetically wired to have every SE medication has to offer.............

AnacortesGirl

Just another thought on the sleep issues.  I was only getting 3-5 hours of sleep and couldn't seem to take naps.  My onc went with Lexapro because in addition to it being an anti-depressant it also works as an anti-anxiety drug.  Now when I wake up at 1:00 am I might ramble around the house for an hour but then I can go back to bed and go back to sleep.  It's broken sleep but at least it's a total of 8 hours.

Pure

Jenn so sorry to hear about your pain. You no your the 3rd person this week that told me they RA and then got breast cancer. My friend who HAD breast cancer 2 years ago just got diagnosed with it as well-I somehow wonderi fhey are related. It's so strange.

Have you thought about doing yoga? There could be some specific moves that could help or even an neropath.

Hugs>>>

coonie

(((((((((Jenn)))))))) I don't think we've "met" but I just wanted to send you some hugs and prayers. Bless your heart!!! I wish there was something I could do too. My mother-in-law has battled RA since she was mid- 40's....she's now 74 and doing pretty well. She has her ups and downs and has tried all the meds along the way. I just can't imagine how you're feeling with breast cancer being added to your life. It's good to vent. It just seems so soothing to come to the boards and feel the love and support from the sisters here.

Again----big HUGS and lots of PRAYERS for you!!! Hang in there. I'm sure you'll get it all going the right direction soon.

KerryMac

There is some connection between inflamation (which happens with RA) and cancer.

I know my husband has found a lot of the changes in our diet due to my cancer have helped him too.

jenn3

Jen/Kerry- the RA and cancer could be related on many different levels. I do know that if they are or were taking the newer drugs on the market there is a link.  Although I didn't know it at the time - they are known to cause cancer.  My onc has written several papers on the links between the medications and cancer.  He said that since these medications have hit the market he (and his colleagues) have seen a rise in cancer patients (that have taken these mediacations).  Which is why he told me I can no longer take the medication.  Yoga is a good idea - something I'd like to do.  I did at home Yoga DVD's years ago and loved it, but would like to take classes to make sure I'm doing the moves correctly.  I'm guessing the diet changes helps because it helps with the inflammation.

Coonie - thank you for the hugs - I feel them wrapped around me know.  By the way I love raccoons, used to collect everything I could with raccoons when I was younger.  I still have everything packed away.  I throw out everything, don't save much, but I just couldn't get rid of the raccoons.

Today the pain isn't too bad b/c I accidentally took too much Aleve.  Two at 1am, forgot and took 2 more with breakfast. My stomach didn't like it, but my joints were doing a dance.  The neuropathy pains are trying to sneak back in, hopefully I can hold them off or at a minimum until I see the onc on Monday.  Still haven't talked to the rhuematologist - we keep playing phone tag.