So discouraged

I went to the family party last night and had to leave early I was in so much pain and could not walk once I had sat for half an hour. I am so tired of this relapse, been going on since August. I wish I would just pass to the next life and be free of all this pain. I'm tired of fighting, even though I know I have to. Sorry to be such a downer, but I need to tell someone. My husband was sad that we had to leave early, but he was gentle and took good care of me. Is anyone else out there in a horrible, long lasting relapse that can relate? Kelly

46 Replies

  • Oh Kelly, I'm so sorry :-( You are always so upbeat and strong, so this must be wearing you down.

    Can your neuro or a pain management specialist offer you any relief or give you any insight into this "relapse"?

    Always here for you! Sending you prayers for some relief.

  • Erash, thank you for saying that I am strong, I fight this disease like heck and try to always smile. But you are right, I am plain worn out. I slept 36 hours straight over the weekend. My neuro just tells me to ride it out. I just never thought it would last so long. I will be glad when the holidays are over, too much stuff going on. Thank you for your prayers, that is the best medicine. Kelly xx

  • So sorry Kelly, you are justified when you are in so much pain. What do you take to stop the pain? Surely your doctor can help you. I know it's hard for other people to understand unless they have been there, everyone handles it differently depending on pain threshold. Hope you can feel brighter soon, a big hug, and non strenuous cuddles, many blessings and pain free, Jimeka

  • Jimeka, thank you for understanding. I take OxyContin and oxycodone for the pain during the day, just one each. Then neuro tin at night for my nasty neuropathic pain. As you can see in my post to erash, I am exhausted. I know I don't have any option but to keep pushing forward, but it is hard sometimes isn't it? I don't know how you do it, you seem to never break down. What a good example you are. Thank you my dear friend. Kelly xx

  • Amore55, it's Fancy 1959. The relapse will not last forever. Do not give up on us. Talking like that only makes it worse in your mind. Keep a positive attitude. It's what we choose in life that makes a difference in our life. Choose to be happy, choose to look at your glass half full, choose to focus on the things you can still do like be with your family and friends, and you will be happy and live a full life. Choose the positive and it will be so. We make our own destiny. If you need reach out and I'll grab you by the hand and will not let them. Together we can get through this. Have you talk to your neurologist lately. If you haven't it's probably time to go back in and visit with him or her. Anytime you want and hopefully the same time everyday and we can find positive in both of our llives to focus on. Together we are stronger! You need to try to post me back today so we can set up a time. You'll be in my thoughts this entire day and try to keep me in yours as well. I look forward to your reply but until then keep your chin up!

  • Fancy, sorry it took me so long to get back to you, I had a doctor appointment today. What part of the country do you live in? I ask so we can schedule our posts together. Thank you for giving me some of your precious time, it means so much to me. I'll wait to hear from you. Kelly xx

  • Kellyxx, I live in central Kentucky in Versailles Kentucky.That is in the Eastern Time Zone. Kelly, don't ever think my time is more precious than your well being. Your well being and the well being of every member of the chat room is my primary job. You know, we all have seen the dark side lurking in the shadows, trying to persuade us to come closer so it can overcome our optimism. That's why I have taken hold of your hand and I will keep you away from the dark Shadows lurking in the corners. Together we can get through this. Where do you live and what time zone are you in. Let me know as soon as you can. Thanks. I look forward to your reply. Fancy

  • Fancy, I live in Salt Lake City, so I am 2 hours behind you. What time would you like me to write you? Thank you again for your kindness. Kelly

  • Kellyxx,

    What is your schedule like? What time do you go to bed? I usually go to sleep sometime between 1-2 a.m. In the morning I'm up around 8-9 am. Of course, sometimes I'm asleep on the couch at 8-9 p.m.

    So let us set up a time and go from there. Fancy1959

  • Fancy, how about 5 pm my time, 7 pm your time? Does that work for you? Let me know and if it works I will write tomorrow. God bless you. Kelly xxx

  • That sounds perfect! Talk to you at 5 p.m. your time is 7 p.m. my time. Are you still in the workforce or are you on disability?

  • I have been on disability since my Dx Ten years ago. What about you? Do you still work or do you get disability? I am really lookingforward to gettingto know you! I alreadyknow you are a blessing to me. Kelly xxx

  • Kelly, sorry that I missed this post. I worked until about 3 years ago. Thank the good Lord that I had taken out long term disability and my job because as most people experience it took me over 2 years to get on Social Security disability. What was so bad about that my hands are so numb and have such poor dexterity that they rated at something like 18% usable of what a woman my age should be. That was supposed the other issues I had going on and I still couldn't get on disability with Social Security. Remind me and I'll tell you about the first visit I had with a social security person is like an interview to apply for my benefits. It was just amazing in a bad way. Talk to you tonight at 7 my time. I'm looking forward to it......😆

  • So sorry Kelly, dealing with pain, and big occassions, seem to wear us all down. Hope you are better today. Hugs, gentle one to make you feel better!

  • Thank you for your gentle hugs, it is amazing how much better they made me feel. Kelly xx

  • Kelly - I'm so sorry you are in so much pain. Constant pain is so wearing on the mind, body and spirit. Especially when it is intensified by a relapse. Your relapse will end eventually. Just hang in there. I know what you are going through. I had a relapse last year that lasted 9 1/2 months during which time I took several falls and broke my leg in 2 places and tore a ligament. Because of my other health conditions I had to just ride it out as well.

    Let me know if there is anything I can help you with. I am only a couple of miles away. I happen to have a very happy service dog in training that would love to come visit and make you smile!

    When I had my long relapse I remembered what my mom always told me when she would have a relapse, "This too shall pass"

    Let me know if you would like a visit and Willow and I can stop by on Monday or one evening.


  • I want to personally thank everyone who has responded to Amore55 today. Nothing beats having friends who are concerned when times get tough when you find yourself down. Together we will have Kelly up and running in no time at all. But seriously you are the best people around to be concerned about one of your own. This chat room is special because of people like you. Fancy1959.

  • So sorry to hear, Kelly. Good effort to get out and show a little holiday spirit, so try to be proud of yourself for that aspect. I'm still recuperating from my relapse and as much as my doctors and therapists see progress, I'm not seeing or feeling it. The unpredictability definitely stinks and it's hard to commit to outside things. You are not alone in your frustration and thanks for letting us know what's going on with you. Sending prayers for patience and strength. -Ginger

  • Ginger, I am so sorry that you are struggling too. It really stinks to have a relapse, doesn't it? I will keep you in my prayers. It will get better. Keep your chin up. Love, Kelly xx

  • Amore55 Hi Kelly. I'm new to this site. When I was first dx'd I was in so much pain at one point even though I had no idea it was due to the MS at that time. My shoulders and wrists hurt so much I couldn't lift my coffee cup. I thought it was just bursitis in my shoulder. I went to an orthopedic doctor who said I have the beginning of arthritis in my shoulders. He gave me a cortisone shot directly in my left shoulder. I'd never had one before and was scared to death it was going to hurt worse. It took the pain away completely in my shoulder, I was relieved as it was keeping me up at night. A month later he also gave me a cortisone shot in my elbow and then another one a while after the first one. I complained to my neurologist at that time my whole body was just not recovering and my joints hurt all over. He said I was having a flare up or relapse. To help speed up my recovery time he set me up with a solumedural intervenous infusion. I had two of them total and after the second one I didn't have that pain and inflammation. I've had more flare ups like that but my new neurologist won't give the intervenuos kind. Hecwill prescribe the pills but very reluctantly. Ask your neurologist if it's possible they can try the interveneous steroid treatment to speed up your recovery time. I hope they can so you may enjoy the upcoming Holiday's and festivities. Feel better soon. I'm sending a hug 🤗 your way.

  • It is probably that any MSers who have had it for years have suffered the same thing you did, so sorry. I myself after 40 yrs of MS have had to leave my own party many times by retiring to my bedroom when I couldn't go on. You are NOT alone but your dr should have some meds for you, I took Ritalin on a needed basis. Good luck

  • I was responding to your fatigue and (duh) left out your pain!! You did not say what kind of pain you are having and where? I am on Baclofen 40 mg a day (muscle relaxant) and Neurontin 1800mg a day which both used to work, however, I am having MS hug and nothing is touching it so I truly understand your despair. Hasn't your Neuro suggested Solu-Medrol for your current exacerbation? Suffering without relief is exhausting and frightening - we do understand.

  • Hey, what saddening news😪. I know it gets hard at times. I was diagnosed in may of 2013 and have not been on no treatment since. I have trouble with my balance everyday, been this way since oct of last year. Your husband has my utmost respect because he is by your side willing to sacrifice his joy's for his wife😊. All I can say is stay strong, you can't give up, and watch what you say there is power in our words! I don't want you to feel like giving up and I'm sure he really is affecting when you feel that way.

  • Kelly thank you for sharing what your going through. About a year ago I went trough a relapse like your that lasted what seemed like forever. Keep the faith Kelly and I will keep you in my prayers. I slept all the time when I wasn't asleep I wanted to be. But it sounds like you are blessed the way I am with a wonderful husband. We and are stronger together.

  • Thank you for your kind words and prayers. You described exactly how I feel about sleeping. I know it can't go on forever, one day it will be over. Looking forward to that! We are very lucky to have great husbands. Take care. Kelly xxx

  • Amore55, it's Fancy1959. It's 7:03 p,m. E,S.T. Where are you???

  • Fancy, I am SO sorry, I fell asleep. Truly I apologize. How are you tonight? I'm happy to report that I am feeling a bit better today. Not so much pain. Are you ready for Christmas? We try hard in our family to focus on the birth of the Savior, not just gifts. When you get a chance tell me about your family. Thank you for allowing me to check in with you each day, I so appreciate it. With love, Kelly xxx

  • Good evening Kelly. I sure can sympathize with falling asleep. It's been known to happen to me too! Sometimes all I have to do is lean back and I'm gone. I'm so glad your pain has lessened. Now take care of yourself and don't do too much between now and Christmas. I think sometimes we are our own worst enemies. We're so used to the way we used to work and be able to do things pre MS we forget that we need to conserve energy and remember that we have to focus on keeping our body happy for the long run.

    I've been very blessed to have a daughter. She's 38 and living in Atlanta. She's actually my step daughter but that's my girl in the only one I have and we're very close. Then I have three sons. My oldest is 23 and lives in Lexington. I'm middle is 21 and he still at home when he's not staying at Eastern Kentucky University. He's studying computer science and a junior. And my youngest is 19 and he's also studying at Eastern Kentucky University he's a sophomore and he is in paramedicine. He also lives at home when he's not at the University during the week.

    What I'm excited about and looking forward to this week is going to my husband's family for Christmas. We will go down on Sunday about 4 p.m. and I bet you with the new generation of toddlers running around from nieces and nephews that there will be at least 30 to 35 people there for Christmas. It's chaotic, fun, and non-stop action with the children running around. In a few years my sons might start adding to the chaos with children of their own! I can't wait!

    Then of course there's the food. Oh my gosh you have never seen a spread like our family can put out. This year I think I'm responsible for taking a wonderful cranberry, celery, pecan, salad and a dip that the family is wild about that consists of sour cream, ranch salad dressing mix, bacon bits, and sharp cheddar cheese. All the ingredients of course are totally good for you and calorie-free. Haha!

    Tell me about your family and what your tradition is for Christmas!

  • Fancy, I have five sons and three daughters, as well as two stepdaughters and one stepson. Yep, a very big fun family! We have 14 grandchildren. Two of them passed away as infants due to severe birth defects, so we hold the others a little tighter. Christmas is fun and rather chaotic, but loads of fun. My husband and I marvel sometimes, all of our kids are successful, upstanding people. None of them drink, swear or smoke. We have two in medical school, and one is getting his Phd in nuclear physics! Way over my head. They are each other's best friends which I am so grateful for. So that is my family. Sleep good tonight, talk to you tomorrow. Thank you again. With love, Kelly xxx

  • Kelly,

    Wow, what a family. Sweet pain free dreams. Talk to wyou tomorrow. Fancy.

  • Fancy, hello! How are you? I hope you feel good. I'm doing pretty good, a lot of pain, but bearable. It is so nice to check in with you, makes me feel very loved and I thank you for that. Let me know how you are doing. Kelly xxx

  • Hello Kelly, it's my turn to be late tonight! The good news is my Christmas shopping is officially finished. The bad news is it may be an hour late to talk to you to finish it. I don't like to hear that you're in it more pain again tonight. What have you been doing today? During these relapses it's very important to behave yourselves to extreme measures. You want to make sure that come Sunday you can enjoy the day and not being so much pain you can't stand it Kelly. Tell me about your day what you accomplished today and what's your good thought for the day is.

  • Well, my husband is off work until Tuesday, so we went out to breakfast, then on to our favorite store Barnes and Noble. We have a dear friend in Texas and realized we forgot his present. Then we wrapped some presents, and relaxed. My positive thought for the day is how blessed I am to not only have my biological family, but my ms family. That certainly includes you, my friend. I hope feel good and have a wonderful evening! I will talk to you tomorrow. Good night. Kelly xxx

  • Good night Kelly and may your dreams once again be pain free. Until we speak again tomorrow evening make sure you take it as easy as you can. We need to get you all rested up for Sunday so you can enjoy Christmas with your family. Fancy🎄😆🏺🌲

  • Fancy, hi, how are you? Are you ready for Christmas? We are all set. I have a dear friend who has breast cancer,she will be fine, thank goodness. But she doesn'thave any family so we boughtloads of presents for her and will spend part of Christmas with her. We are all excitedfor her to have a holidayagain. I am sorry to tell you that my pain is just through the roof, so I will be resting tonight. I will have to miss tomorrow night as we have a party with some of our kids. But I wish you the most wonderful holiday. Thank you for your friendship. With love, Kelly xx

  • Aamore, between now and Monday we will just have to do the best we can do with family Christmases and get togethers. Sorry I'm late tonight after 9:30 and I just got in. I guess we have to learn each other's schedules too. I had Wi-Fi at about 7:30 and I meant to text you and was busy and forgot. Many apologies. On Friday evenings I go to an auction that I enjoy. And I got caught up in it and forgot to text you. Again so sorry.

    Kelly you're probably doing too much again if your pain is through the roof. You really need to conserve your energy if you want Christmas Eve and Christmas day to go well. I know it's hard to give over the reins when you are the matriarch at the gatherings. But you must learn that it's time to allow the younger generation to pull their weight while you conserve your energy. I'm sure they get frustrated and upset when your pain become so significant that you have to leave early. It robs them of tradition and a major part of the holiday when you're not there. Please don't do that to them. If you ask them I bet you they would beg to be allowed to do the work while you do nothing but relax and stays comfortable as you can.

    I am set for Christmas, finally! Speaking of a good friend breast cancer which is had a dear friend of ours Under Groove a mastectomy on her right breast when they found cancer there I like them by the 10th. She's home and doing well. She has a big family to help support her. You're such a good Soul too become the family of the friend you have that's missing her family. I hope she appreciates how lucky she is to have you. There is a wonderful thought for the day. I thought that shows how significant you are to so many people, including me, dear friend! Have a good night!🌘🌛

  • Amore, Kelly, it's Fancy1959 checking inon you tonight. We just finished our family Christmas so I'm sorry we're about 30 minutes behind but that's not too bad with everything going on right now. I'm thinking a lot of you today my Christmas wish you and some parts from very specific to you or with with you in mind take it easy and try to let others do the work. I want you so badly to enjoy your holiday. Please don't overdo. When time allows today or tomorrow or even Monday give me a shout until then my friend I hope you're doing very very well. You take care of yourself and again just shout at me when you have time. Merry Christmas. Fancy

  • Fancy, what a wonderful message from you. We had our party with my stepchildren tonight. I had my husband bring me home after the grandchildren opened their gifts and the adults exchanged presents. He went back for the dinner. But I knew my limit, and had reached it. It was fun. I hope you had a wonderful time. Family is so important. I will write tomorrow to wish you a Merry Christmas, okay? Thank you for all your warm thoughts. With love, Kelly xx

  • Fancy, Merry Christmas! It's 9 a.m. and I was ready to give my husband his presents but he fell back asleep! I guess it will wait a bit. 🙂 I hope you are having a wonderful day. I will be thinking of you today and giving thanks for your friendship. Will write later. Happy day! Love, Kelly xx

  • Amore55 l know Fancy1959 has been taking wonderful care of you, so make sure you listen to her! She's pretty smart! Make sure you take it easy today and Merry Christmas!


  • Jes, thanks for the good advice! Fancy is great, like my personal angel. I hope you and your family have a magical day! With love, Kelly

  • Amore55, a very Merry Christmas sent your way from Fancy1959! I kind of waited too late this evening to wish you a Merry Christmas. I wanted to see if you've overdone it today. How is your pain level? I pray you're managing it well, relaxing, and getting ready for bed here shortly. I hope you got to stay for the entire day of festivities however long they lasted. We had severe fog here and even a tornado watch this evening so we didn't stay more than about 3 hours at the family gathering and then we headed out. Literally in some spots you could hardly see your hand in front of your face. But everyone got home safe as we followed each other back to the house.

    I swear if one more well meaning family member tells me I look just like I did the last time they saw me, or that I look really good how do I feel, or do I ever get just really sick I'm going to scream. I guess because we have MS we are supposed to look bad. And as the months go by at family get-together goes by I'm supposed to look a little shabby and a little worse so that it shows my Ms has gone downhill. and just don't make ourself up because we don't give a poop. How about you Miss Kelly did you run into similar conversations with your extended family members today? I guess this was the first time I really noticed it or that it jumped out at me so much because so many people in the chat room had specifically talked about this.

    Hope your Christmas was filled with the stuff dreams were made of! Sleep tight as angels rock you to sleep and absorb and soothe your pain. Fancy🎄

  • Oh Fancy, I can completely relate. So many people have said "oh you look so good, is your ms gone?". It drives me crazy. Just like you said, am I supposed to dress in tattered clothes with dirty hair? I dress very nice and make an effort to have pride in my appearance, and they seem shocked. I have learned to laugh it off, but it still drives me crazy. For Christmas Day we went to my friend's house the one with breast cancer. We absolutely spoiled her with16 packages. They were filled with clothes for her and she loved everything. She cried and said it was the best Christmas she ever had. She fixed a wonderful meal. She is on a fixed income and can't afford new clothes, but I have taken her shopping before and know she adores clothes, so we went all out with about four pairs of dress pants, four pairs of jeans socks, a beautiful winter vest and about fifteen tops. It was so fun, Fancy! I love to do things like that. I will be getting together with my kids that live around here on different days this week, as they did the in-law rounds yesterday. I am managing my pain. I am trying not to let it get ahead of me because then it is so hard to get back in control. Sorry about the long letter, just wanted to share our magical day with you. Will try to write tonight. Thank you my dear friend for your kindness and friendship. Love, Kelly xx

  • Amore55, Kelly i am so glad you are watching your pain level and making sure you keep it in check. Think about how far and how well you have done this past week from the first post I intercepted and got involved with you on. I am so very proud of you and how far you have come and how well you have managed your pain over this holiday season.

    On a different note, I believe you and your husband deserve some type of humanitarian award for how you spent your Christmas day with your friend with cancer and how you enriched her life and with package after package after package to brighten her Christmas. Instead of me being there to support you I think our rolls have flip-floped. You have shown me so much, how to overcome adversity, and how to work through a problem that you thought was insurmountable. I am honored to have played a very small role in getting you started in the right direction. All you needed was a gentle nudge then you learned to manage your pain to an acceptable level, found your wings, strected them wide and took off flying!

    I hope you we will continue our daily check-in as i so enjoy your support and our friendship. You are an amazing women who is tough as nails! I did want to ask, if i did before and forgot, i'll simply blame it on my MS brain, what your current diagnosis is with MS. This fall i officially was moved from RRMS to SPMS. The reason i'm asking is i am checking in on a new Therapy this week. I look forward to your reply. Your friend and admirer, Fancy. Remember together we are stronger!

  • Fancy, thank you for your kind words about my husband and me. I have always taught my kids that doing for others is the most important thing in this world. And thank you for that gentle nudge and friendship you have been giving me. I will keep writing each day if you don't mind, I enjoy our conversations so very much. I was diagnosed with RRMS, but my husband and I both think it has progressed to SPMS. I need to get in to my neuro and see what she thinks is going on. I am working hard to manage my pain, but will do it. What are your symptoms? Do you have a lot off pain? Do you use a walker or aids? I hope you sleep good and have sweet dreams. Love, Kelly xx

  • Kelly, Amore55, where are you? It's Fancy and i've been tyring to reach you for hours. How are you doing. If you still are having the pain so severe it is interfering with day to day small tasks, you need to seek help NOW. I swear I wish I were closer because I would come pick you up myself and drive it to the closest ER at this point. Severe pain like you are now experiencing can have very negative effects on your body. It can put your body under tremendous stress and can literally shut system's down. Please please please get to the closest ER right now! I'll keep you in my prayers and thoughts. Right now I'm scared for you and I need to hear back from you. Even if your husband just takes a second to drop me a line let me know what's up. Don't let this continue Kelly please. Fancy😦😔

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