Bad day

It's been a rough couple of days. I'm in pain, fatigued and just feeling like crap. I hate times like this. I've been taking my meds, staying hydrated and trying to rest but I seem to be sleepy no matter what time I wake up. My balance and coordination is so unpredictable that one time I'm walking fine and next I'm stumbling and using my cane. This flare is different from any that I've had before and I don't want to spend time in the hospital for weeks again. No I'm not calling my Dr, because he will have me admitted for testing and rehab again. I know it sounds crazy, but I hate laying in a nursing home listening to sick people and seniors tell me I'm too young to be there, while the physical therapy workers make me stay in bed and gain except when they're ready to do therapy. I'm jus tired of being sick and tired!!! πŸ˜”

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  • Oh Fee I really feel for you, it's awful the fatigue, the inability to walk, etc, I think most of us have been there. Like you I don't want to involve the doctors, you loose all faith in them. How old are you Fee? If you are young I would call your doctor, you have your whole life ahead of you and you need to know what is going on. What kind of ms do you have? Praying for you, Jimeka hugs

  • I'm 44 and I was told PRMS at first, but last year I was told RRMS. As long as I can get up and I don't fall, I avoid calling my dr. I have an appointment on the 18th, but if I don't get better by the weekend, I'll let my dr know

  • Fee09 harness whatever strength u can find. This will pass, hopefully very soon. I understand your feelings about calling doctor. if u rethink this, maybe doc can get u some relief and u can refuse hospital and return home?? Do u hv someone who can help ?

    You've helped so many of us, I'm sure we'll be sending strength to u.

    Keep us updated.

    Florence - purpletustin

  • My doctor gave me pain ointments and up my med a few weeks ago. I've been progressively getting worse over the last few months.

    Luckily, I have my husband and daughter here to help me.

  • have you tried pain meds for nerves? ointments shouldn't work since the pain is caused by the nerves. check on pain meds for nerves like for diabetes. I can list for you the ones I take and what works well for me.

  • I'm on gabbapentin, baclofen and diclofenac

  • guess I should just sympathize with you. I'm a guy and like to "fix" problems. I'm sure you have done your research. I understand the feelings as one of my major symptoms is depression. I often get sick if being sick and tired and depressed all the time. hang in there. I feel for you

  • So simply, yet beautifully said, Msindestructible.

  • thank you, I have SPMS, the dmds for RRMS never worked for me, however this new treatment [for me, Rituxan] is working good.

  • That's great news about the Rituxan! I too am SPMS. On no dmts tho.

  • I'm with Kaiser as my Medicare provider. I just found out that the cost that Kaiser charges Medicare for each infusion [once every six months] is about $600 of with i pay $12 of. Much cheaper than the $6500/month of the ??? last drug I was on that didn't work and I had some difficult side effects every week. The Rituxan has been soooooo wonderful, if you can call a DMD wonderful. The Rituxan therapy is a type of "underground" treatment. Though not approved for MS by the FDA, it is simply because the manufacture don't want to spend the money to have it approved. [they are focusing on a "newer" (I'm sure for better revenue)] However, there are a lot of MSers using Rituxan and the manufactures are going to continue to manufacture it. Medicare will pay for it's use and I'm sure medi-cal as well. Please look into it. It will take a least a year to determine if it is of benefit for you. It was well worth it to me. You will stay in my thoughts.

  • Ms-Indestructible, what wonderful news about the Rituxan and your minimal copay. I hope I read that correctly!My doc is considering Rituxan or Imuran. I am really pleased to hear the good results you're having with it. Thanks! πŸ’•

  • I just switched to Kaiser and had my first appointment this week. I will be seeing the neuro on the 19th. Hopefully I will get some definite direction of treatment.

  • Hope the appt on the 19th goes well, Fee09. Please let us know! πŸ’•

  • If any of you would like the name and which Kaiser facility she works out of, please let me know. I'm sure the info might assist your neuro as she specializes in MS and puts ALL her MS patients on a Rituxan Therapy with great results. Extremely minimal side affects. I'm so very happy to be of help.

  • FYI, I will be on "Vacation" LOL and flying off to Denver from SoCal from the 19th to the 24th this month so I might not be able get here too much during that time. Fee09, I'll keep you in my thoughts on the 19th. Keep me updated please.

  • Where are you in Socal? I'm in Riverside county

  • in Orange County, 4 a while btw Lake Elsinore and Corona

  • I'm in Perris

  • Oops, I'm leaving for Colorado later today the 9th not the 19th. I'll be back on the 24th.

  • Thanks, Ms-Indestructible, but my neuro is having my rheumatologist prescribe the Rituxan (or Imuran-whatever he decides on). I don't have Kaiser, but LOVE my neuro at the MS Clinic here. Enjoy your vacation!πŸ’•

  • Doesn't matter how you get it. Try it I hope it will work 4U. That makes sense as one of the FDA approved uses is for rheumatoid arthritis. Please make sure it is the Rituxan Therapy. Give me a few days, I've been swampted trying to get ready to leave to Colorado.

  • Have a great trip!πŸ’•

  • an update. I had not heard of baclofen or diclofenac. I talked to my neuro about it and started baclofen. It worked at first. I have a very sensitive liver due to all the meds I'm taking, and the baclofen was not beneficial enough for me to continue on it. However thank you for mentioning it.

  • Sometimes topical so can give relief even for nerve pain. I've had compounded salves (gabapentin, naproxen, lidocaine, amitriptyline ) that zonkered me and sometimes use Lidoderm (topical lidocaine which is specifically for neuropathic pain).

  • I have both gabbapentin and lidoacaine ointments and they do provide some relief

  • I was relying on "mis"-information. it is always good for me to be re-educated by the informed. I believe it is an individual experience, [just like everything else related to MS] so what is there to loose? I am happy you get some relief, any amount of relieve is wonderful. I wish for everyone dealing with their own experience of MS finds relief regardless of how unconventional it might seem to others. Hell if it works why not use it.

  • Hi Fee sorry I just remembered your the mechanic. Well if you had the determination to be a mechanic, then you can beat this bad bout you are going through. Hang in there, start fighting.

  • Fee09 this is purpletustin again. I just checked and realize we live 40 miles apart! If u could deal with a visit, send me msg.

  • Fee, my heart goes out to you. I wish I could do more than send you a virtual hug. If purpletustin is able to visit you, I know she'll be carrying with her the concern and encouragement of all of us.

    I viewed solumedrol as my RRMS miracle drug when I went through relapses. I actually did the infusions myself, at home, after the IV was started at the first infusion. I don't know your particular situation and whether this would be an option for you, but I thought I'd throw it out there in case it might be an option.

    Keeping you in thought and prayer.

  • Hi Fee09 lm so sorry that you feel so awful. Sometimes this monster just gets the best of us. :( Honestly you should get ahold of your dr and let him know what is going on with you at least. And maybe he will see you sooner.

    I am happy to hear you have help with you daughter and husband there. Thats a relief that your not alone.

    Like Tutu said can you do the solumedrol at home?

  • Hi Fee, sorry to hear this. I can understand you just wanting some peace. Sleep as much as you need to - body knows best ! Self help for me was paracetamol ( for anti inflammatory properties ) and omega 369. Take care, Angela x

  • Hang in there Fee09. Wishing you a brighter day 😊

  • Sorry to hear that, hope you get better soon!

  • Hi Jbahnan looks like you almost slipped through the cracks. :( lm so sry. But l gotcha now :) Welcome to the best chat ever. I really hope you join us and give us your input. Jump in anytime.

  • I do on topics that associate with me. I agree best chat room ever.

  • I'm glad you do! We have an amazing bunch here. And well let's face it, lm the bestest lolol joking No seriously l am. Just don't tell them lolol :D

  • I'm so sorry you're going through such a rough patch. I'm glad that you shared with us how you feel right now. I have found that venting feelings here can be so helpful, especially since we can relate with it all. I'm been so grateful for the encouragement and prayers on my account. I hope and pray you feel comforted and encouraged, too, and that your doctor stays on top of these symptoms.

  • Are you eating an anti-inflammatory diet? Taking the right supplements like Protandim and ReMag?

  • Fee09, hi I'm Kelly, my tag or sign on name is Amore55. I am so sorry that you are so sick. Reading your post was like I wrote it! I too have been in a bad relapse since august. But somehow hearing someone else going through it is so hard to hear. I sure hope you can start to feel better. You will be in my prayers. Kelly

  • Feel better soon.. Those down days can be so rough, but come visit us.. maybe we could cheer you.

  • Fee09, it's Fancy1959. You know where we are and we were always close for you. Know that you are not alone in the tiredness you feel and the general bad days you occasionally have. It's all part of the monster we deal with, MS. That doesn't make it any less important to you and I'm not trying to do that. I just want you to realize that together we are stronger and together we'll get you through this just like sometimes people help us through it too. I know you don't want to speak to your doctor but you have to trust him to take care of you if you're having a bad flare. Tell him you do not want to go to nursing home and see if there are any other alternatives like Outpatient physical therapy or if your home bound home physical therapy that you could take advantage of.

    Talk to us. Tell us what's so different about this flare. Perhaps we can share advice that we use on similar flares. That doesn't mean you don't have to call your doctor but perhaps you can look for alternative ways to conquer this flare. I wish I could be close enough to give you a big hug and tell you you're okay. We have to fight this monster we have to fight hard. Keep your phone and your cane handy and refuse to give in. Be careful and keep yourself safe and keep us informed.

  • Fee09 l hope your feeling better today, let us know :)

  • I'm doing much better. My pain is tolerable and I'm sleeping so much better. I didn't go to the hospital and I did call my doctor and let him know how I was doing. He left it up to me, because I'm stubborn ☺

    I'll be seeing him this week and I'm pretty sure he'll ask me a ton of questions.

    Thanks for the concern everyone

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