So Much Anxiety: Hi everybody. This is my first blog... - NRAS

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So Much Anxiety

Lynn610 profile image
28 Replies

Hi everybody. This is my first blog. I would like to start out by saying that finding this website was a God-send. I felt so isolated and after reading some of your blogs, I don't feel so alone. To begin, I was diagnosed about three years ago with RA after suffering for about 2 years with chronic pain in my ankles and wrists and finally deciding to seek out a rheumatologist. The Rheumy diagnosed me with RA and started me on methoxerate and plaquenil. That didn't help. Then my doctor tried me on other meds, half of which I can't even remember anymore. All of which I had some sort of bad reaction. Turned out I'm allergic to NSAIDs. Terrible news as we all know most of the pain meds for RA contain some type of NSAIDs. I decided to take a three month leave from my job in order to find the right meds for me. That three months has now turned into one year because one month into my leave, my hip started hurting to the point I couldn't go up and down stairs. I ended up having arthoscopic surgery to clean out all the inflammation and debris from my hip joint. Then fibromyalgia hit and then my fingers starting getting that old deformed look (nevermind the pain in them). Then restless leg syndrome appeared, which apparently is one of the side effects of fibromyalgia. Then the anxiety and panic attacks set in. Needless to say, my three month leave turned into long term disability. I am now taking weekly Humira shots, which is helping a bit plus Cymbalta and methoxerate. So here I am four years into this nightmare and the reality of probably never going back to work is hitting me hard. I've worked steadily for almost forty years, 25 in the same company. I think the only thing that keeps me going is knowing my daughter is pregnant with my soon to be grandson. I want to be strong enough to hold that baby in my arms. Well, thanks for listening to my story of woe. Sorry it's so long, but once I started typing, all this stuff I've been keeping to myself just spilled out.

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Lynn610 profile image
Lynn610
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28 Replies
flaxton profile image
flaxton

Hi

Lynn welcome I am fairly new to this site and have found it my saviour.I have only just been diagnosed but have been ill for two years.I have just started MTX it has not had any effect yet and I am totally wiped out with fatigue and pain most days. We had to sell our very successful business and I sometimes at aged 53 feel 100 and on the scrap heap.Then I come on here where everyone is lovely and friendly and knows what you are going through.The support is amazing as well as lots of tips and information. I think we have to look at life differently and appreciate the little things.I have been sitting in the sunshine looking at the daffs and life did not seem so bad. The fact you are going to be a Grandma is really exciting and will be a real boost. Keep talking to everyone on here you will get great comfort.

Big hug and hope you have some better days.

Lorraine xx

Lynn610 profile image
Lynn610 in reply to flaxton

Thanks Lorraine. I'm still trying to learn all the abbreviations on the blogs. So much medicine out there that I've never heard of. Big hug right back!

sylvi profile image
sylvi

Lynn,you are never on your own in this group. We all get down so sometimes it get so bad i have at times wished i was dead. No i am not suicidal,it is just how bad it gets for me. I got made redundant three years ago and i have been unable to work since. One job round the house and i am tattered. How i am expected to go to work god only knows. It is better out than in you and once it is out it doesn't sound as bad. You have a lovely grandson to look forward to. Just think that you will have more time to get yourself in a good place and your joints all rested before your grandson makes an entrance. Your daughter will be glad of your presence when the time comes.xxxx

Lynn610 profile image
Lynn610 in reply to sylvi

Sylvi: I can so relate to the suicdal feeling. I too am not suicidal but I wonder why i need to live with pain every single day. Is it really worth it?

sylvi profile image
sylvi in reply to Lynn610

Yes it is,hubby family,children without them i wouldn't cope.xxx

CB43 profile image
CB43 in reply to sylvi

A few times I have wished the same thing too, I even thought about an overdose...... except it was never going to happen... cos if I could have manged to get out of bed, I would never had made it to the kitchen! and if i could have made it to the kitchen, I would never had been able to reach up to the medicine box! and if I could have reached the medicine box, I would never have been able to undo those blooming child locks on the pills anyway!!! arh well, never mind, I'm still in pain but I no longer feel that way :-)

sylvi profile image
sylvi in reply to CB43

I am pleased to hear you say that, feeling like death would be a better place and actually doing it and your a good person not to have done it. SOmetimes just talking or crying makes things easier and i find i am not so stressed after a good howl.xxxx

miss profile image
miss

Hi Lynn very sorry to hear your struggle with the dreaded RA. Its not much fun is it. I can only hope that you will be well rested and feeling brighter when your bundle of fun appears.

So pleased you find comfort from this site. Its been a god send to me as well. Take care xx

Lynn610 profile image
Lynn610 in reply to miss

Miss: Thanks so much for reaching out to me. I'm so glad I found this site. It makes me feel less alone.

miss profile image
miss in reply to Lynn610

Sorry i'm a bit late been sleeping !!!!!!!!! you are very welcome. This disease is bad enough. This site i found has been wonderful. So pleased you do to xx

welcome sorry to hear your story, I know the work thing is a real worry xx,I think sometimes we all think dark thoughts at our lowest but think of your loved ones, and there all always some people at lot worse than ourselves x

Lynn610 profile image
Lynn610 in reply to

Yes Summer: This site makes me realize that I'm not alone. Thanks for replying to my saga. :)

Dotty7 profile image
Dotty7

Hi Lynn, I'm sorry to hear of your struggles. You will be able to hold your grandson, you will find a way - human beings are very resourceful creatures. I too wasn't well enough to carry on in my previous job - but there is more to life than work. I wonder how I ever found the time to go ;-)

Good luck with your medications,

Dotty xx

Lynn610 profile image
Lynn610

Hi Dotty. It's so ironic that you said "I wonder how I ever found the time to go to work". I say the same thing all the time. It takes me so long just to get out of bed and get ready to go out. I try to leave my house every day and do at least one errand. It makes me feel like I'm still part of this world. And by the time I get home, I'm so exhausted it's all I can do to get my sweats on and relax. That right there takes me all day. The only good thing about having RA is not having the constant stress of my job hanging over me. And...if I don't feel strong enough to go out....I don't have to.

minka profile image
minka

hi lyne and welcome you will make some good freinds on here with tips to try

i know how you feel about not working anymore its probably made you feel you have lost some independence to some extent.

and its hard to explain to some people cos all they see is a body thats walking about but they cant see inside it like you can.

and fibro on top of the ra fibro itself is bad enough

you take care and blog when it gets you down

Hi Lynn and welcome. I can't comment on work because I'm self employed and got a lot on just now. However I see you are just starting MTX having only recently been diagnosed. You will know this drug can take a while to kick in but for many, when it does it's life changing. I was on it for 17 months, had another DMARD introduced and after 10 months was switched to injections. This made a big difference to my RA.

I've been having a drug break recently (4 weeks off) to find out if other symptoms are side effects or additional related health issues and have found that they almost certainly are. I'm actually looking forward to restarting the MTX now because I'm realising how much difference its made to me.

I really hope it works as well for you too and that you will be lifting your grandchild up without pain and full of joy and wonder!

Tilda x

Ps meant that the additional symptoms do relate to RA not to drugs!

tilstongal profile image
tilstongal

Hi Lyn,

It's nice to hear that you are going to be. Grandma for the first time. My son's wife had our first grandchild in January -a tiny prem baby 3lb 3oz - I can so relate to your concerns about holding your new little one as I felt jus the same, and in fact it is the only time in 10 years of RA when I broke down whilst with the Rheumy consultant. I am able to hold my grandson but not without pain when I pick him up but then I get that making a cup of tea! I will devise ways for him to climb on to my knee when he is bigger, and at the moment I just ope -as you will I am sure.

This group is great for support so bring your problems here and you can be assured that someone will have had something similar and will be able to share their experience with you.

Good luck with the baby!

Tilstongal

lynn-bel profile image
lynn-bel

Hi to Lynn from me, Lynn! What you've been through is awful; I do understand about work - I retired early at 62 because the RA was taking its toll on me and I wanted to retire while I could still do stuff. Luckily i am not allergic to anything - sulfazalasene (sp?) didnt suit me, I did have nasty reaction, but have been on methotrexate for 13 yrs now and it suits me well. Try not to be too down about not working- there is more to life and having a grandson will give you joy, a youthful outlook (tho you prob. already have that) and you will be surprised what you can do with him - I had to be careful with mine, picking him etc. but now he's 6 he understands I can't do lots of things, so thankfully he's stopped running and jumping into my arms!!!

This website is a boon for all of us - any time you want to winge, moan, scream, we are here for you.

Also, you can get lots of hints and gold nuggets of advice from people who know how you feel, so stay in touch with us. I thought I may have had fibromyalgia and have read how awful it is, so you do have a double whammy don't you?

Stay positive, take care of yourself, listen to your body and although you want to keep working, remember your health is the most important and you want to be as fit as poss. for that little boy when he comes into the world.

Keep smiling and never forget, you are not alone!

Lynn xx

Lynn610 profile image
Lynn610 in reply to lynn-bel

Thanks Lynn, I appreciate your responding. You're absolutely right about the job. I've been out of work so long, I think new technology has probably left me in the dust anyway.

lynn-bel profile image
lynn-bel in reply to Lynn610

The ironic thing is I learned more about new technology after retirement as I had the time to study and practice! Luckily I had to keep up with it on my job. I have taken two Open Univeristy courses, first one was writing fiction, and due to start a digital photography course. I won some vouchers otherwise prob. couldnt afford them, but they are short courses lasting 10-12 weeks and arent terribly expensive. Dont get qualifications, it's just for my own enjoyment and interest. There will be lots you will find to keep you busy.

x

selina profile image
selina

Lynn - sorry you've had to join us. I'm on MTX + sulfasalazine & coping well with no side effects to speak of. Hang on in there during this difficult period of adjustment and waiting for drugs to work. Be kind to yourself, try to love life, in spite of what it throws your way, and don't let this disease define who you are. Good luck X

Trixierainbow profile image
Trixierainbow

Grandchildren are the best medicine. Be courageous to show them how to show compassion and help others. My grandchildren (2) know Grandma is fragile but she also is so much fun. Enjoy and live to the fullest! blessings!

mitzymoo profile image
mitzymoo

Hi Lynn

Welcome to our caring and supportive family. Anytime you need someone to talk to just let us know and we'll always be there for you.

I have enclosed a link for your grandson, it is the angel of innocence, she will always watch over him.

lighthousebythesea.com/imag...

This ones folr you. Hope it helps you through your dark times as much as they help me.

fbcdn-sphotos-e-a.akamaihd....

Take care and remember we're always here for you.

Angel hugs and strength from me to you

shirlthegirl profile image
shirlthegirl

Hiya i would just like to say welcome, I have also been of sick from work now for 8 months and it really gets me down, i have also worked for 35 years and have never been out of work for so long, I joined this site last September and it has been a great support to me, i have made some great friends on hear which i know you also make, I'm Sorry to hear that you have been though so much and i really hope things get better for you soon, I was on 15mg of MTX but it has now been increased to 20 mg, I am also on hydroxy of 400 mg a day.

Take Care and look forward in reading your blogs Shirley xx

lorann profile image
lorann

Hi Lynn, I can't believe what just happened!! I was typing away, relating to you and your RA etc, welcoming you, commenting on your writing ability, thought you were probably near my age if you had been working for 40 years, you will have a grandson, and tonight, my first Great-Grandaughter will be born, her Mom being my first Grandaughter. I think my dissertation might have exceeded most others in length...well, it all disappeared!!! Gone. Totally gone, not one word of it left anywhere! I was letting the words flow rapidly through my fingers, as you said. Now it's all gone. Wish someone would tell us where it goes and if it can be retrieved! Anyways, all the best to you, once the right combination of drugs is established for a length of time, it will all become second nature and you will find yourself swallowing and injecting the darned stuff and then getting on with the day :)

Stay tuned, we are all here virtually all the time. Loret xx

Lynn610 profile image
Lynn610 in reply to lorann

Thanks Lorann....the worst day of the week for me is Wednesday; that's the day I give myself an injection of Humira, which I find very painful.

humira1 profile image
humira1

Don't stop taking your injections, there a bugger to get back on them.

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