Its miserable for me would like to talk about it with others that are suffering like me?
Its miserable for me would like to talk about it with others that are suffering like me?
I do talk about it. I have a support group on FB that split off a forum like this because it wasn’t healthy for us. But I am willing to start a conversation here….I have been miserable with this crazy illness for about three to four years ago, depending on what you consider my first symptoms…within 13 months of diagnosis I was taken off my job and placed on the disability waiting list….How I hate waiting. In the mean time I didn’t have an income(still waiting, so still no income), have lost mobility and usefulness….and ended up having bariatric surgery to get some weight off my joints as they were screaming at me. My disease still isn’t in remission or even completely controlled.
I get the feelings of misery you are facing right now….I’m willing to listen if you want to talk…..Marianne
I’m going thru the same thing it effects my whole life my relationship and every other aspects of my life I finally after 3 years with help of a lawyer got approved for disability after being
Denied and appealing for 3 years so now I have a little income not near enough to take care of me and three children that are 4, 5 aand 8 I feel like the worst mother cause I’m in pain all the time so I’m not happy most of the time but put on a fake smile to give them some kind of normal since they always see me in pain and always askbifvim ok I yell them yes but I’m not my partner of 6 years is overwelmed from working full time then coming home snd then coming home and being a care giver I feel like anytime now she is going to get sick of it and lesve then ill lose my kids cause I can barely take care of myself nevermind 3 kids I have been suffering with joint pain for years since I was a teen but no one not even Dr would listen finally 4 years ago I had a bad flsre up and went to the er found a dr that didn’t think I was crazy and gave me a referral to a RA dr thst did the blood work and my inflammation levels and ra factor were thru the roof I’m 28 and hsve had two back surgeries neck and shoulder surgery due to my RA attacking and ruining my body I judg feel so alone because nobody understands my wife is the best person I could ever ask for but she is overwelmed I think she needs to join a caregivers support group but she is a private person plus will never even talk to me about the way she feels so I hsve pain all day everyday plus all the stress that comes with it 🙁 just want to talk to other people that are suffering from the disease like me
I’m typing with my phone so a lot of stuff looked scrambled its the phone not me so hope you understood all that
By Andrew Lumpe, PhD Moderator
Sarah, Sounds like RA has put you through the ringer. I’m glad you found a place to vent a little frustration on this website and there’s lots of people here are have similar experiences and can relate. Have you looked into support groups in your area? The Arthritis Foundation may have such a group. Or there may be general support groups for those living with chronic illness. Hang in there. Andrew
I have called the foundation and they said there is none in my area only in west palm area I have asked for help from them in a lot of different areas but they are never any help.
I have tried to start support groups at church’s but nobody can evet commit to the same times or days so it never works out.
Sorry hon, I fell asleep last night, and then hubby had me running all day today. I get the frustration you feel. I don’t have a live support group, and I used to go to one but it had so much drama….you know how we women can get. I do have a few friends with auto-immune diseases and we connect on FB.
I too feel like a horrible mom. My oldest graduated, and I had to pay someone to throw his party…thankfully I had a friend who did a lot of the work for free.. I have two other teenage sons, and I miss sporting events and activities all the time. My boys have taken to thanking me for browning a pound of hamburger and opening a bottle of prego!!!
It is very frustrating to deal with all this….I don’t have any answers. I know I would never make it without my supportive husband and my kids being so great. But mine are older. One bit of advice I would give is to take a little bit of time daily and find a bit of peace….prayer, meditation, what ever works. When the boys were little I used to call it a mommy time out! My middle child has an autism spectrum disorder as well so even before RA I had my hands full….
hang in there….I”m here to listen if you like…..Marianne
I miss my boys football practices all the time have only made 3 of there games out the whole season I used to cook every night now I can’t open things or stand up long enough to cook the dinner I use to cook every night I love cooking and now that’s another thing that I can’t do anymore I can barely clean my house cuz I can’t bend over I can’t grip things in my hands I can’t do basically everything that I used to do so my partners left having to do most of the things in our household after working a full days work I just feel like anyday she will just have enough and leave or meet someone that’s healthy when we met I was full of energy and happy went to work at 6 got home at 7 then cooked and cleaned and did it all over again mon thru Friday now I can’t even barely cook one night a week if that my love life has gone to pretty much zero don’t know what to do I just want my life back and my relationship back to normal
But I have realized that with RA their is no normal again it just gets worse is all that I have seen and that’s all that has happened to me
Hi Sarah! I can totally understand how you feel! I was first diagnosed in 2004 just 6 months after getting married. Uncortunately when I first was diagnosed i didnt understand the disease and thought he just meant I had “achy” joints so I ended up quiting my medical job andmoved with my new husband and kids to WPB, Fla. It took another year and a half to get diagnosed again and have it make sense! I DO know the stress you go through with your spouse/partner after time i feel like they get tired of it(um so do we!) Mine keeps telling
Me evven after ten years..what i need to do to get better. Like im not trying! It is a lonely life, noone invites me out cuz i cancel too much so i no longer have friends, cant find support groups in my area either i had to move back to Cleveland in2008 because my only parent, my mom got lung and brain cancer and passed away within 6 months. Somehow you have to find a way to relax stress is the worst thing i know because i live in tur.oil myself right now what gets me through is prayer, dreaming, meditating and TRYING to stay positive not always easy hang inthere, it really does help to talk to other sufferers so you remember you are Not alone! Keep in touch!
I know what you mean I lost all my friends cause they don’t want to sit around and watch movies and just have dinner that’s all I can do and 27 and 28 year olds don’t want to do that for fun they want to party and I can barely walk so I can’t do that I quit drinking a few years ago due to all of my medication I can’t drink so to them I’m no fun wish I had some friends with RA so cause they would be understanding I miss my old life before RA I ask why me there is all kinds of terrible people who live healthy lives but a good person a mother of 3 small children has to end up with this terrible disease its not fair and makes me so angry and everyone says that does not help try living one day in my life you would be angry too I’m in pain all the time had four surgeries in 2 years so if I have days that I’m angry or sad I think I have the right to be then I have the people who help me complain about it like I don’t feel bad enough about everyone having to help me all the time like I’m some child but they don’t think about that how frustrating it is to me I was an independent woman that worked full time and took care of myself and my kids while working 5 days a week after working all day came home cooked took care of 3 children got them to sleep cleaned my house got to bed at about 12 then woke up at 6 having to stay up late to do work since I was a teacher.
So I understand what you’re going through I go through everyday I wake up in pain go to bed in pain live in pain everyday it’s hard to do simple things like even wash my hair or take a shower because I have absolutely no energy nevermind cook dinner for my kids or give them the bath or clean my house or just do simple things that a mother should be able to do so I feel like the worst person ever but there’s nothing I can do about it I get my treatments and do everything that I’m told by the doctors but nothing helps and then I have a spouse on top of it who gets frustrated about having to always do everything like I enjoy her always having to do everything I know she works all day and I feel awful that she has to come home and do things in the house after working all day its not fair but I can’t do it if I could I would I try to do what I can do when I have my good days a few times I have tried to do things in the houseand over did it and I end up in the hospital so it’s just better not to push myself
Is there anybody who had a horrible day like I did and feels like giving up I HATE RA! Today was one of those days! So tired of it!
By Andrew Lumpe, PhD Moderator
Sarah, I’m so sorry to hear about your struggles and that it’s been hard to find local support. If it’s really wearing on you, I encourage you to seek professional help immediately. Talk to your doctor and let them know how hard it’s been. Get a referral to a counselor. It’s so important to have someone to talk to in real life. Discussion forums like this are a great way to vent, ask questions, seek information, etc. but they aren’t real good for helping immediate needs in real time.
I did the counselling thing it didn’t help since they are not going thru the disease like I am so they don’t understand thats why I like this forum since the people on here understand what im going thru cause they are too.would love a actuall support group but like I said there are none in my area. Its pointless talking to most people without the disease cause they don’t understand what I go through everyday so talking to people on this forum is good for me so I know I’m not the only one going thru this hell
Hi Sarah, its been a couple of days since i have been back to this site and then could not remember my user name! Major fibro fog on my part! It doesnt seem like this is a popular site for forums, if you would like to respond by email my current one is firstname.lastname@example.org but im not really good at remembering to check my mail but im working on getting better. Just trying to spend tie on internet is too much work for me. When i have a good moment im usually trying to clean or get caught up with everything…never seems to happen. My spouse is always aggravated with me for one thing or another, cuz i cant ever get things done, like you said i get too tired or just do too much and pay later. Hang on there eventually you will get more use to your “new life”. I still fight it daily, cry, daydream about the “old” me. The college grad with medical degree who worked 40-60hrs a week made good money and could dress nice and wear heels! Now im on total disability, no dress up or heels,
No social life, tryin new meds every 6months..still nothing, broke and spouse no longer will help. Sounds pitiful but…i try very hard mot to dwell on it cuz that just will cause more stress which causes more sickness..a bad circle to be in. I have a 3yr old granddaughter who thinks im the greatest, a roof over my head, food, and my kids. I stay thankful i can still (kinda) use my hands and feet, walk, talk and have use of most of mysix senses so i try to be thankful for that! I pray alot, started going to a new type of church, i started going to a cognitive therapy counselor that specializes in helping people with chronic illness,that has helped alot. You should try counselling again but look for one like mine.Cognitive therapists can be very helpful, sometimes it takes a few Drs. Till you findone you click with. My last one was horrible! Took me 3 tries to get it right but now I look forward to it. Give life time and just hang in there the best you can. Look around you and try to see the good in your life,pray,meditate(zen..namaste 🙂 ) and keep in touch i will try to bea good ear for you to vent to..I to REALLY understand how you feel,easy for me to give advice but sometimes I even have trouble takong my own advice. Be kind to yourself! From one sleepy, painful friend tto another….YOU ARE NOT ALONE!!
By Andrew Lumpe, PhD Moderator
Thanks Tryin2live for your thoughtful reply and encouragement to Sarah. This website is new and it will take some time for the discussion forums to take off.
Your welcome. Im sure your forums will catch on especially since there are alot of us out here that can use the help, thanx for starting a new place for sufferers to connect. PS Sarah..bad day but will try to call later or sunday,hang in there!!!
Missing the old me i want my life back! Feeling down I hate RA!
I do too! But @ least now I know what it is & why I was feeling the way I did.
right now my life is a little depressing, I can’t make plans to do anything because I don’t know from one day till the next what I will wake up to. seems like when one thing calms down like fingers, wrist ect. then something else flares. I HAVE BEEN DEALING WITH a flared ankle for the past 5 months, the more I walk on it the more swollen it gets. If I stay completely off of it the swelling goes down, but if my foot turns or on uneven ground I come out of my skin. After all this time the doctor did an MRI thinking maybe it was fractured because of the persistent swelling and I was praying it was fractured so it could be fixed, but it wasn’t. The MRI just showed inflammation and edema. I am so frustrated! I can’t hardly do anything without severe pain. Today I woke up and my right hand by my pinky knuckle is so inflamed I can’t use my right hand. I’ve been on several different drugs and they help for a while but then its like I’m not taking anything. does anyone relate to this???
By Andrew Lumpe, PhD Moderator
Tracy, so sorry you’ve been battling such issues with your joints. Many RA patients go through a variety of treatment combinations and even then are always helped that much. I’ve been on 7 different biologicals without much help. We desperately need more effective treatments or better yet, a cure!
I understand what your going through I can go to bed one way and wake up totally different the next so its difficult to plan aheadts very frustrating! People don’t get it even family you would think the ones that know you the best would be the most understanding. But the only ones who understand are the ones on this website! The ones that are suffering in pain like us! Its overwelming being in pain everday as it is but then to have a family member say that I have no idea what it is to struggle because they are having financial problems and a new baby on the way! Meanwhile they say I have no idea I have it easy because I get disability lmao! Really I have three and bills and most days I drag myself out of bed to get them to school literally crying in pain while driving they are young and don’t see me crying but I am I cry a lot cause of my horrible life at 28 I’m so sick of being sick every treatmeant nothing works pain meds make life almost bearable but this isn’t living its just not being dead if it wasn’t for my kids I would never get up I just want it to go away! From one person with RA to another suffering person to another hope life gets better for us all!
Sarah, I can understand your story, I also cry all the time because the pain gets overwhelming and my husband doesn’t get it, he can’t relate to a person who has pain everyday, I know he believes I’m in pain because he can see the swelling and feel the heat on that area, but he thinks a person learns to deal with it if thats their life now. I don’t think that will ever happen for me. My life is not the same. I can also relate to people thinking because you’re on disability you have it made, in my case there are no deformities that are visible except swelling, so they don’t think its that bad. I TELL THEM TO WALK in my shoes for one hour and you will be wanting to die. I would give anything to be working my job I loved.
It is hard for me to understand how a person can be in so much pain and there is no meds to give you any relief. The pain meds take the edge of the pain but by no means do they stop the pain.
I guess I was fortunate to have this after my child was grown, I have 2 grandchildren and I know hoe difficult it is to keep them, so I can only imagine how it is for you to have 2 children to take care of. I breaks my heart I can’t keep my grand kids more often. I try to stay positive and tell my self things will get better, praying that day comes soon! You stay positive also, and hope it gets better!!! Take care Sarah!!!!! I am hear to listen, and thank you for responding!!!!! If there are anythngs you do to make your life easier please let me know!!
It seems like we have a lot of the same problems! Having 3 active kids 8 and under in this condition! The only support I have is my mom and dad and of course my wife but like your husband she doesn’t understand she is the type that can have pain or be sick and go work a 12 hour day I wish that was possible for me I tried that and pain from RA is different from any pain I had in my life it hurts everywhere I’m not telling you anything you don’t know cause you are going through it too. I also miss my job I loved it I had the most wonderful boss and I taught pre-k it was perfect my pain started I kept working at first but then starting missing days I dragged everyday when I was there it wasn’t fair to my class so I talked with my boss and told her I had to quit I couldn’t deal with it anymore we both cried and said bye but 5 years later still remain friends. So stopping that job was one of the hardest things I had to do at least I thought then the real pain hit I felt like my life was over was in and out the hospital a few times a month I got pain management and now Its just barely makes life livable like you said no matter what you take it doesn’t make the pain better then you have to hear that the amount of pain medication is very high that your on so there’s nothing much
else they can do the only time I have had full pain relief is on iv pain medication which can’t be permanent so I don’t have an answer for me or you hopefully they come out with a helpful drug for RA. Baby2005shower@yahoo.com that’s my e-mail if you want to talk more without it being viewed by the public I could use a person to talk too also.
By Mariah Z. Leach Moderator
Hi Tracy and Sarah –
I am so glad that you were able to use this website to connect to each other! I think it is so important for us to find people to talk to who understand what we are going through. Sarah I do agree that an in-person support group would be nicer but, like you, I haven’t had much luck finding them myself. So I am very grateful for these online communities which can connect us to each other! Best of luck to both of you and please hang in there!
Hi from Australia Sarah,
If there is no support group in your area, you can start one yourself. Put a short add in the local newspaper with a contact phone number and you might be surprised how many replies you get.
The general public don’t really understand what RA is. When you say you have RA many say, Oh yes, I have it in my fingers or my knee, and so on, when what they mean is that they have Osteoarthritis. you get a little tired of explaining the difference between the two conditions i.e., the difference between auto-immune disease and the usual wear and tear on joints that is caused by age or just over-use of a joint.
Then of course there is the natural depression one can suffer due to the disease, coupled with the depression and frustration due to pain and frustration at not being able to do all the things you used to do so easily before.
Regarding making plans, do it. If your friends are understanding, as mine wonderful friends are, then they will know, that if you aren’t having a good day, then you can catch up with them when you are feeling well.
My husband died about 4 years ago and I thought it was the end of the world because at the same time I was diagnosed with severe RA. I was left to manage a big cattle property (ranch)all by myself. Some days I can hardly get out of bed, other days I’m o.k. but always, there is something to do on the ranch. When I can’t work outside, I find something to do inside.
If walking isn’t possible and I want to check up on my cattle, I either go in the ute, or my Quad bike. Most important of all, I have wonderful friends who wont let me sit in the house feeling sorry for myself. If I can’t go to them because I am having a bad day or week, they will come to me. Just to say hello and to make sure I’m o.k. because I live a long way out of town.
My friends and also my doctor have often said, you should sell the property, but I tell them that is what keeps me going. I have to get out of bed each day as I have to look after my animals and my border Collier dogs.
We all have problems in this life, but how you deal with them is what counts.
My thoughts go out to you. Know that you have friends out there who understand the problems you face every day.
By Jane Burbach
Sarah and all –
I totally understand what you are going through. Though I was just diagnosed in September 2013, I have had RA for a long time and somehow raised two sons who are now 20 and 18. I missed a lot of their activities and spent a lot of time in bed when I wasn’t working. They and the rest of the family have had issues with me. Now at least they understand why things have been as they have. But there still is not much empathy. Two family members have described me as a depressed and reclusive hypochondriac – needless to say our contact is LIMITED by mutual consent.
The methotrexate shots, plaquenil, and folic acid have helped a lot – along with a shot of depomedrol during bad flares. Seems 2 mg of folic acid helps more than 1 mg. I am fortunate that I can still work since I run a consulting business and probably would not be so lucky if a 8-5 job was required. There is NO WAY unless it was flexible with a work-at-home schedule. Even then a full-time would be basically impossible.
My husband gets so frustrated at times, but his sister’s husband has it too and she tells him how bad it can be for him at times. He manages to work full-time and they have two sons in elementary school. I try to help with housework and am thankful that my husband likes to cook and is good at it.
My social life went so far south for a couple of years that I have lost contact with old friends. Some of my friends don’t understand how I try to make plans when I feel decent and then have to cancel due to a flare or severe fatigue. Several have offered cures like gluten free diet, B12 shots, vegan diet, etc., etc. One said what are you going to do? Take meds?! I’m like yeah that’s the plan.
I am just now starting to have family get-togethers at my house again. We went a couple of years without hosting and it seemed like we lost some level of cohesiveness. We hosted Thanksgiving and a Christmas party and they were both really fun. They wore me out to the extent of being in bed or on the couch for several days – especially the Thanksgiving – but it was worth it.
RA is just a terrible disease. Our local Arthritis Foundation branch is having a Walk for Arthritis in May 2015 and I plan to participate and invited my sister to walk with me. Hopefully the RA will cooperate!
People say when you have a chronic disease you have to find a “new normal.” Well, in my opinion there is no new normal with RA. I am just praying for remission and am grateful that I can do what I do.
I hope the meds help you achieve some level of remission soon. I hope we all do.
I am new to the group I have had RA for 14yr I have had a bad flare up for the last four months the past month has been bad I can’t use my right hand I hate to depend on anyone it has been hard I know my family loves me but they don’t understand the pain just need someone who understands what I am going thru
By Andrew Lumpe, PhD Moderator
Nana, glad you found the site. All of us here can relate to your experiences and we’re here to support you. Sorry about your recent flare. If it’s going on that long, you and your rheumatologist should chat about your treatments.
By Jane Burbach
So sorry about that long flare in your right hand! It makes daily living almost impossible. Have you tried any different meds to snap your hand out of it? You’ve had it for 14 years so you probably a lot about treatments – like steroid shots or packs – and mobility devices to make chores easier with your hands.
I remember what it was like to not be able to use hands and it is certainly a helpless feeling. Family members cannot fully understand what it is like. Maybe someone could go to a rheumatologist appointment with you or you could give them info about RA?
I hope you find some relief soon.
By Jubi Mac
I was diagnosed with RA when I was 27 yrs of age & now I am 62. I was given gold shots to get me where I could walk … Then was on prednisone for years. Been on so many medicines throughout the yrs it totally depresses me to even think about it, yet I was so thankful the doctor could help me. Throughout the years I have seen my RA every 3-4 months… Then 4-5 months. This has been for 35 years until this past November when my rheumatologist told me he could not supply me with hydrocode anymore and referred me to a pain clinic. He put me on these about 10 yrs ago, along with (anti-inflammatory)my Meloxicam & Gabapentin.(which he said was for fibromyalgia). I quit my job at age 60 due to my health & proceeded to apply for disability without an attorney, just all medical records). Since that point and time my doctor has told me that I am in remission… But he still gives me my RXs as before.. With the exception of hydrocode pain medicine which I receive from pain clinic. It is exhausting to drive to these different doctors… ( my old docs have passed away) learn new doctors & still my body feels exactly the same way as before. How can I be in remission when I feel the pain I’ve always felt? I am up 1-2 times every night to get in hot tub of water to help ease pain.
I feel helpless…. Like a statistic… Felt like doc is treating me differently since I applied for disability.
What can I do… Or how do I cope? Seems this all makes it worse… Where I don’t feel like living.
I would see another Rheumy, seems this one has given up on you. I live with the pain every second meds not working, started my 6th biologic today (actermera) keeping my fingers crossed it works, I just want my life back! If my doc gives me the impression he is giving up on me Iwould change. I am currently on my 5th doc also, been with him for 1 1/2 years and he seems to e doing everything possible for me. I am on 10 pills methotrexate a week , 10mg pred. and actemera injections along with 10/325 norco for pain bout 4 times daily and my pain is still of the charts, can’t walk very well, hands swollen to the point I can’t put any pressure on them, but I keep telling myself for the past 4 yrs its going to get better. you have to believe it is going to get better Find a new dr.!!!
Fell better real soon!!!
Hi Dede! And Tracy,
I only recently have had computer back, so even though I have been member here for a while, I am just now reading and posting. Tracy, I couldn’t figure your age, but since you are on biologics, (even if it is your 6th) I would guess you are not in your 60’s yet, which is why Dede I totally understand, your story could easy be mine, and the new Fed B/S laws about hydrocodone have truly put those of us with chronic pain in situations and inconvenience that no one should have to deal with in order to have some quality of life. I too was diagnosed close to 30yr old, and I am now 66. I moved from Texas to a rural Indiana town, to live with my first born son, who graciously shares his home with me (he is single, has GOUT and RA) my grandmother and great grandmother were completely cripled up with RA. . I remember being a little girl and staring at her mangled feet. When I came up here, I had to leave a Dr I had been with for 35 years, who too lead me through the gold shots, and all the various meds for inflamation . . .plus I had to battle Hep C. HE did good, I got up here with blood work looking good (no Hep C showing now for 5 years) He too gave me hydrocodone when it made its debut, rather than the old Tylenol 3 or Tylenol 4. ONce he gave me Percodan when I had a bad bad flare that lasted for months. The Norco’s never take all the pain away, but they take the edge off, and enable me to still “live” once I accepted that I can educate myself as much as possible, give my body as much help as possible and keep my mind busy, so that depression doesn’t take over, which is hard, harder than the stiff achy joints and muscles that scream day and night. When I searched for a Dr up here in In, I couldn’t find anyone who wanted to deal with RA, there are no rheumatologists in 3 counties from me, so I was sent to a pain clinic, which insisted I go every 30 days to get my Rx’s. Oh, they loaded me up with pain medicine, a Fentinyl patch, anti anxiety med (they insisted I should take it as part of the ‘coctail’ a sleeping pill, methocarbanol (a muscle relaxer) and I swear I’m forgetting some … He is currently facing charges from the State and federal for his prescribing habits and 12 seniors under his care who died. . .So, after that scare (and 61 stictches on my forehead from falling forward into my kitchen counter, I was totally over medicated, had my son not come home when he did, I probably would be part of the statistics of that Pain Dr. Dead. I then found a family practicioner, he cares for me totally, including doing all the extra paperwork and new protocols for chronic narcotic RX precdures, so that I am not in agony, doesn’t feel that the biologics would give me more help than the potential for disaster, should I need my immune system for something other than to attack my own body, so we “treat” the symptoms, I do things on good days, and then finish things weeks or months later! I still try to sew, watch my grandkids once in a while, and most friends and family know that when I say I’m down today, I’M DOWN IT IS HARD to cope, to hope, but I”m alive, I wake up every morning — which is not fun, but I still can hug my son, or talk to my daughter on the phone, it beats the alternative, and I will not allow this disease to take that from me yet.
I am 54 was diagnois at 48, I am currently taking actemea, it is not doing what my Dr wants, but I can feel a difference in the pain. The pain meds are controlling the pain more than it has been on any other meds. The swelling is about the same but I do feel better. I just hope it continues!!
and yes it is very depressing when you look at your life then and now. I get where I don’t want to do anything when I am feeling better because when I do, I pay for it foe days after!! But like you I keep telling myself it could be worse!!