Just really struggling been homebound with bad mental and fatigue jyst cant handle it..was also diagnose last year with jvc virus..im alone really alone i make plans to do something then im to tired..anxiety is horrible my mind racing horrible they want me to do pt..and i feel worse finally 2 weeks ago out the bkue i felt normal then last week my son spraypainted something in our place and ive been down again..my ms is pretty much in brain problems ..shrinking ..lesions..depression.isolation emotions etc..idk what to do i make plans then i cant leave any suggestion to help me..im really at the end of my rope fighting this...
Help mutilple sceloris...going insane - My MSAA Community
My MSAA Community
Luvhair, keep strong. Feels like trying times. My head races at times & my thoughts are extreme to the left then to the right. We get really sad then we're ok. Sometimes the tunnel is dark BUT keep reminding yourself that there is light at the end of the tunnel. Sounds lame but it's true! Self love yourself. If stuck inside, take a deep breath, spend the day or even an hour, pamper yourself! Whatever you can do for yourself, put on soothing music you like. Things like that. Have a feel good moment. What makes ME feel good. Think about that only. Some times when I feel sad/bad, I look up positive affirmations. Also, read things from happify.com it helps redirecting my thoughts. I certainly hope this helps you. Sending you hugs. Be strong!!
I'm sorry to hear that but your not alone in this topic. I sometimes feel really alone even though I know I have family and friends. They don't understand the monster (MS) but I push myself little by little everyday even when I feel bad. You have got to fight this monster. I hope you find a way to overcome this. God Bless ❤
Thank you rosey..my family has just kicked me to curb when i was diagnosed..so truly i am alone and i hate this beast..
luvhair you’re not alone. I think we all here have broad shoulders and you can always lean on them. Keep letting it out and things will get better.
As Royjr says, keep letting it out. Here we understand, stay strong, even if you don’t feel like it. As the others have said, do something that you enjoy, blessings Jimeka 🦋 🍫 💐 🤗
Hi luvhair sending u thoughts and hugs and yes this monster is crap no doubt about that! 🤔🤔🤔🤔 xxx
You are not alone <3 - I've been feeling really sorry for myself the last few weeks with this latest flare.
I went on anti-depressants. I don't know what caused it but I started getting horrible anxiety, without a known source. So I decided to try and they really did help. I switched to Cymbalta a few months ago to try and combat the pain.
Lots of hugs, it's so hard when you can't drive or can't get around like you use too. It messes with your head.
Hi, cheshcat . I was on Cymbalta before I ever got the MS, and not only does it help the depression but it also helps prevent Migraines and helps the MS pain as well. In fact, I've been on it so long I can't remember when I first started it! But I know what I feel like without it, and it's much better with it.
Ok maybe tht is simething i should look into my migranes are horrible...someone said they gained a ton of weight..im not going crazy about weight gain but ive already gained 20 lbs just cuz i csnt go workout or anything i just dont want to feel more worse if i gained a bunch of weight did u gain alot from cymbalta
I gained absolutely no weight with Cymbalta. It's amazing to me how many Ms people also suffer with migraines. Same with depression. I haven't seen any studies about linkage between any of these, however. Has anybody out there seen any such studies? The thing that actually cured my migraines was Lyrica, which I still use and which also helps with the MS pain.
Hi...well i will look into cympalta..lyrica i cannot take made me feel insane..it was horrible for me..thats another situation so so sensitive to meds that only a few yhings i can take..what i do take is in small mgs .yes so its really a struggle when meds cannot take..idk they are really trying not to add any more meds..to many now..ive made atemtps to get off tht antipsychotic as i think it causes more problems...my nuero well lots of studies of the supplement biotin ..for hair skin nails in high doses..i could only get to half of dosge and started havn problems grrr..i thinks its 20000 mcg per week..so that didnt work was startting to give energy but starting havn other problems ..trying to do more natural stuff..vitamin d i take high dose a ssript once a week over counter wasnt cutting it..nx week i was asked to do blood work for study of vitamin d helping 50 people are participating...personally i think it helps i can tell when its the day to take it ..im considering askin them to add more vitamin d..i heard from someone else about another supplement tht helps forgot to write down..im not a vitamin freak by any means but im just willing to try anything..ive also was told magnesium cream only found on amazon..a nuro told me..i know my therapist order mag oil..there are also mag flakes if u can handle soaking in tub..but today im ordering magnisum oil..ive also been messing lately with essential oils..lavender.. ectulyptus...lemongrass..rosemary..peppermint..using those in diffuser..
luvhair , I am horribly sensitive to medication, which is why I have been tried on absolutely everything, both on and off label, to cure those migraines, because I can tell you that, having had liver cancer at 19 and birthed two sons, the migraines are the worst pain I have ever had. My neuro had tried absolutely everything else, but I can't take most of the stuff. The fact that Lyrica worked was an absolute fluke. I take Vitamin D, 50,00 units one time per week. I also inject Vit. B12 one time per week. I also take a multi-vitamin, Vit. B2 and B6. Aromatherapy is good too. I also take 800mg of magnesium oxide every a.m. So far, so good. I get migraines every once in awhile now, and I usually knock them out with medical cannabis as I am fortunate enough to live in a state that has it. Good luck!
I.did the mag oil..started having issues with tht also...seems supplement s or meds im hsving reactions..gave biotin away and thx god health food store took mag oil back..i do have great luck with oils...lavender.. ,, epilepticus..lemongrass..Rosemary ..a friend owns essential shop n Hastings nebraska called bathbliss..and she ships thank god..but she mixes up an oil called goodnite..the best i cant find anything close to it..im n same state so she ships for 5 99..n oil i think is 5...seriously the best u can find her websites doesnt show all her oils but u can call her if u cant find her site let me know i give u her number...i also use bath n bodys stress candles..n the wax melts...sometimes i switch i go with the lavender one..these are the best ive tryed all brands and those bath n body beat them all..you can also order tgeir stuff online too really slow at shipping!!!
Sukie427 I don't know how I missed your post!
Cymbalta has really helped my pain and I added Gabapentin a few weeks ago.
My migraines are lower too now, thank goodness!
I still need to work out my trigiminal neuralgia. My med list is always growing and I hate it but at some point I'm going to need to talk to my neurologist about a daily med for that. Sigh.
I have been really happy with Cymbalta though, it has helped more then I had hoped!
Hi, cheshcat . I suffered with horrible migraines from age 35 to age 55. The doctor looked at his list of both off-label and on-label meds used for migraines and found that Lyrica (pre-gabalin, which is same as gabapentin (Neurontin, which, surprisingly did nothing for me) was the only one he hadn't tried. He said he'd never had any luck with it, but it was the last resort. After the addition of Lyrica to my medication regimen, which was actually 2 years before my MS dx, I went migraine free for 11 full months! The combination with Cymbalta did the trick after 20 yrs of incredible suffering. After birthing 2 children and living through major cancer surgery, I can honestly say that the migraine pain was the worst pain I have ever had. I have met so many MS patients and so many of them have migraine and depression, you'd think that someone would do a study on the link between them. Good luck!
I have a weird migraine TAC (Trigeminal Autonomic Cephalgias). I've had them since I was a late teen. I've had several surgeries (all pelvic/uterus/tube related) and nothing has come close to the suffering from migraines or the trigeminal pain. Weirdly for me, when I'm pregnant or nursing full time, I get zero migraines. Nothing. It must be some what related to my hormones for me. I'm glad you found relief too. Not fun. I'm always surprised when people have no health issues/surgeries/migraines. Some of us are just "special winners" 🙄 - I will say, I had a traumatic childhood and I didn't deal with it for a long time, I was doing "fine" so why kick a nest of vipers. I did go to therapy though when my health started to decline.
You know, when I get a really bad migraine, which doesn't happen that much anymore thank goodness, it's always on the right side of my head and the trigeminal nerve on the right side of my face gets all red, swells up, and gets horribly painful. I always thought that that was just an effect of the migraine.
I never thought my migraines were anything besides regular migraines. It wasn't until my health went south that I even started seeing neurologists.
I plan to ask my neurologist about this connection too. My autonomic symptoms and migraine pain is on the right, my trigiminal neuralgia is on the right, and my vestibular nerve damage is on the right. Just seems a little coincidental. Of course I'm not a doctor and in reality I only have 2 sides of my head, so I suppose it could be coincidental.
My migraines have never moved, not ever. Since I was a teenager and I'm 46. Same exact spot, same eye. I've always wondered what is under that spot!
You can see that you have lots of supportive friends here who truly do understand. Everyone here is cheering for you to keep going.
Please consider telling your doctor about your feelings. Are your meds really controlling your symptoms? Could you benefit from an antidepressant or anti anxiety meds?
Let us know how you’re doing.
Yhsnk you guys!!!..it seems like a wonderful group..i know im really venting im just dont know what else to do my bestist friend i could tell everything to passed away a year ago..we used to have tons of fun..we both got sick bout same time she had gotten lukemia and throat cancer and i didnt get to go see her much she lived like 35 min away so driving is an issue for me..she stopped driving..so i didnt get to see her much..
luvhair Yes, we are here for you and pretty much all have up and down times. Not knowing all of your situation, if the doctor isn't able to help you, Do you have a close friend, a pastor, someone who will listen and just care.. We are here for you, and more than most anyone else understands.. I've certainly had my times when I wondered if it was all worth it, was I having a crisis of faith in the Lord, devastation when I was diagnosed.. MS, What's MS? Boy did I start researching, which lead me to this great site. Don't give up and keep on coming back!
Ok i will ..ive tried talkn everything idk what to do anymore..this isnt living
Here's some phone numbers that may help you get some help. Please don't give up, we share your feelings in so many ways.
Check us out mymsaa.org/msaa-help/helpli...
MSAA Help - 1-800-344-4867,
1-800-273-8233 - National Suicide Prevention Lifeline (they will help you talk through it)
Most Important is how MSAA can help you, please contact someone.
Call (800) 532-7667, extension 154. Helpline hours are Monday through Friday, 8:30 am to 5:00 pm, EST; with extended Wednesday hours until 8 pm EST.
Chat live via your computer through the online MS Chat feature
Visit MSAA’s blog MS Conversations featuring timely, interactive discussions of topics important to the entire MS community
Toll-free Helpline & Chat
A toll-free Helpline allows individuals with MS, family members, care partners, and friends to speak directly with one of MSAA’s experienced specialists who have a social services or counseling background.
Visit MSAA’s blog MS Conversations featuring timely, interactive discussions of topics important to the entire MS community
MSAA’s headquarters closes at 5pm EST. If this is a life-threatening emergency, please dial 911. You can also reach the National Suicide Prevention Hotline at 1-800-273-TALK and the National Domestic Violence Hotline at 1-800-799-SAFE for 24-hour assistance.
Helpline specialists are available to assist individuals with MS, and the people close to them, adapt to the changes they may be experiencing as they go through a life-long process of adjustments to best suit their evolving needs. MSAA’s specialists can offer encouragement to clients and their care partners to identify obstacles and discover ways to overcome them. Helpline specialists may also recommend the program(s) offered by MSAA and other resources that would be of help to the client, and assist him or her with the application process.
Please see your doctor. Your doctor can help you the best.
I’m sure you deserve to be treated as a person who has so far lived your live as a good person. M.s. can’t take away what a good person you are. Get help and then let us know the change you will see in yourself.
Sorry that you are not doing well. Have you talked to your doctor about antidepressants and/or anti anxiety medicine? Lots of us have felt that way at times, you just have to care enough about yourself to keep trying.
You are worth fighting for, so call your doctor!
Im really tired of fighting it..not many more meds they can give me have a mri today i really dont know how im gonna even make it there..😢
I hope you get the MRI and find a way to cope, that works for you. Sorry that I cannot be more helpful!
Ty well u guys it really helped me talking to you all and listen ing to me i dont know why it helped but it did and ty i will call those numbers im not sucidel im just alone and whrn ur sick it is horrible..i made it to thr mri.all by myself and walmart to get some groceries idk how i will feel in the morning but ty i will use those numbers ...
We all feel like that at times luvhair . We loose the abilities that we had before, sometimes slowly but sometimes quickly and it is hard for others to understand because they often cannot see why we cannot do what we could before. At first I convinced myself that it was all in my head, acquaintances thought I was faking it to get out of work (I loved my work!). My family believed me but just couldn’t understand, and I think it scared them also.
Believe in yourself and do what you need to keep your spirits up.
I hope you feel better soon.
I fully agree with what everyone here has said. It does get rough sometimes when you feel overwhelmed by what this MonSter is doing to you. I am on antidepressants and still have horrible days. But here you are never alone. Every day you wake up is new blessing and a new start on your journey. You just have to look up and see the sun waiting for you to shine. 🌞🌞
luvhair I agree with the others. Please stay in contact with your doctors. If one antidepressant doesn't do the job, try another one. Cymbalta is one of the strongest, and hardest to get off of if you decide to do that. I am on Lexapro, but it took at least 3 weeks of taking it, with Xanax, to carry me over until it was working by itself. You can get through this. If one doctor doesn't help you, find another one. I've been there, done that. Reach out and find someone who will help you. Keep trying, don't give up.
We'll be praying for you to come out of this soon. If you are a person of faith, get your Bible and read in the Psalms. One of my favorites is Psalms 37. Another of my favorite passages is in 1 John 4. May His love surround you today.
Come on team! Let's keep luvhair in our prayers - all day today!
I just looked at psalms..thts crazy..about only anti.i can take is wellbutin and moodstabilizers..lexapro..was the worst for me..plus i gained 80 ponds in a few months and it did nothin..tht was before i really got sick.so now yes klonipin ...zanax when needed..antipsychotic tht i dont think i need..ritilan..idk ive only had 2 good weeks tht was week before last in 14 months..idk what to do anymore...um this isnt livin..im so at a loss and i really dont know what to do about it..i have my 3 dogs tht love me no matter what but its getting even to much take them out and i could never get rid of them..im.seriously struggling with this its took everything from me..not material stuff but my hair carrer my clients my friends my family my church..my family if you cant give them something then pretty much kicked to curb im not kidding..left out of every family thing now everything ..when i used to be the one cooking and having the holidays..and helping evryone..not even a nothing for mothers day..just nothing from them..not even a thank you when send gkids bday cards.dont even no if they get them..not even a merrie christmas call this year i have 4 boys..only one is my youngest..that lives with me but is never here alwsys at his gfriends.tht yea he just had a baby with..so for xmas it was just him n me..he thinks his movn in wiyh her they fight every 3 days..very unhealthy girl he picked..its such a long story of hell .im.so mad,and just teally crappy..my mom passed away in 96 she was only 15 years older than me i wish she was here..but all my life ive always took care of everyone brothers n sisters when i was a kid myself..had to even drive m to school make myself late..it goes on and on and on..i dont even get a hi or bye or nothing from a pretty hateful family ...and no wonder antidepressants arnt working on top of this beast how you fix a broken heart..
I am so sorry. Sending u virtual bear hugs and holding u close to my heart. 💜💜💜💜
It's true that broken hearts are hard to heal, but they do. We have 2 sons and one of them has such a toxic relationship with the girl he went with for 10 years then married. All they do is fight. Granted, we live across the country from them but when we are with them they make me so nervous I'm glad to go home, which is a terrible way to feel. However, if your son is old enough to move in with his girlfriend and be on his own, then let him go. I learned the lesson the hard way, and almost lost my son in the process. He knows how you feel but he's going to do what he's going to do regardless. He doesn't want your advice, criticism or anything else, and if he does, he'll ask you. I don't know if you've been supporting him or giving him money, but since that only enables bad behavior, the Bank of Mom should close...immediately! If he wants to act like an adult then he needs to man up and support his lifestyle as well. You have other things to worry about...it's time to take care of you. Nobody else matters, not your estranged family, not anybody. Besides this site, you might also try finding a MS support group in your area that you can attend in person and actually meet people in the flesh and find some kindred souls. Good luck!
luvhair Our kids and grandkids hold our hearts in their hands and they don't know it. I have 2 grown daughters, both medical professionals. 1 has decided I have Alzheimer's and the other just calls it "my neurological condition!" that one holds 3 Board Certified Degrees. A psychiatrist, psychologist, and is a Neurologist. They have pulled back away from me and I'm not allowed to see my minor grandchildren. I barely get a Birthday/Mother's day card. I had to call my oldest grandchild to see if she received the $75.00 bouquet I sent for her 25th birthday. I got a text back, "yes, they're pretty" No thank you, Nada. Christmas, we got a photo christmas card, no note, nada. From both of them. No thank you's for gift cards I sent all over the United States, no thank you's for the Emailed Christmas cards that includes an advent calendar with games and puzzles for the kids to play. Nothing from my adult grandkids, not even a call. I get along better with my step-son from a prior marriage, his father passed away a long time ago and my step-son and I share a bond that only we understand after we were both abused by the same man. I know I didn't raise my daughters to be that rude and of course wonder what happened. Life can be very tough, both emotionally, physically, and then you get MS! Hang in there, you have many of us here that are here for you.
Oh wow i know how can they be so hortible
It's heartbreaking, but we know we did our best. We pull ourselves together, strengthen our hearts and go on. Find our happiness in what we do with ourselves, not what others do to us. When I first went numb, and answers were slow in coming, I prayed with my pastor and gave it over to God. It gave me peace and strength to continue.. I will keep you in my thoughts and prayers for your peace, acceptance and inner strength to shine.. You have friends and new family here💕
I can relate to your situation. Try to think of the positive things that make you smile. Think of the accomplishments you made before the monster took over. Look at it in a positive way now that u r in your situation due to health. That those family members you helped out, did u no good. Because now that you need help. They're no where to be found. I have external family members that i couldn't see through until i couldn't run and assist them no more. It's sad to have to see people for what they r due to illness. But it sure is great to know now than later! Believe me, you are truly blessed without people who aren't truly genuine. At least you have this community online who can relate. It's unfortunate that disease makes us have to have level of acceptance. The do's and don't of what we can and cannot do. Stay strong luvhair....Continue to fight!! Accept what u can do. What u can control & don't worry about what u can't control. That stress eats at this disease and make our body hurt more,etc.
luvhair HI! I am Rob! I have not spoken to you yet. I see you are brand new to this site. Well, I am very bias, but let me tell you. You have found the mostest bestest friends, Ever! If you need to complain and let out everything, Go for it! This is what we are here for! We can even give some useful advise sometimes. Anyway, we all need a place like this. Welcome aboard we are all here to help each other through our issues. We mostly all pray for each other!
We all love ya already!
Sometimes anti depressants are not the answer. I took cymbalta and felt like a zombie. You know your own body best.
Tell your doctor if something doesn’t work for you.
After my heart attack and ms , I thought of not caring if I live or die.
I saw both my children get married!
I have watch my first grand baby growing to 18 monthes and still going!
My daughter is pregnant with her first baby!
My doctors kept me alive for this!
Can you imagine if I had given up?
I would have missed all of this.
Get the help you deserve so you can cry over these beautiful life marks in your own life.
Thank you for helping me too!
This has made me smile!
You sound isolated - so many hugs. It's the one thing that scares me the most. Loosing my independence and being isolated. I understand why you are feeling so poorly, mentally.
Do you have a ride-source type program? That can pick you up for things like shopping or meetings with groups? Are you next to a bus line, so you can get to places?
There also might be meetings for chronically ill support. There is a meeting at the pain clinic in town for people where I live. Your doctor might be able to put you in touch with different groups that meet.
I too use to be the one that "did it all". Hosting holidays, cake baking for events, if it needed done, I'd do it! Sometimes I wonder if that's why we ended up sick. Doing too much for everyone else. It takes away a part of yourself when you can no longer do things you enjoy. I realize now, while I liked to feel put-upon on some level, I ENJOYED it! I liked hosting all the holiday get togethers. So you loose a part of yourself when you can no longer physically do those things anymore.
We are here for you, we understand <3
Yes exactly how i was too...yea i can still drive but getting up and moving around is the problem..i have nothing and nowhere to go n when i do make plans i cancell them idk what is going on with me ..i just feel like ive lost myself ..i dont know how i am..does that make any sence..
Hi luvhair I'm so glad to meet you☺ Although the circumstances sure do stink! 🙁
I do hope you made it to your Dr's today!? How did it go?
Depression and MS seem to go hand in hand. And this time of year, when spring fever is hitting us all? It can seem to make to Worse. And I'm sorry.
Please know we are here for you! Welcome to the fam!
luv hair I am so sad for you. I too feel so isolated and totally understand how you feel. I have a huge family (11 kids) three are stepchildren. I sometimes get the feeling that some of them would be happy if they never heard the words MS again! Thankfully I do have support, mostly this forum, I do not know what I would do without them. So I am not going to tell you all the sugar coated stuff, it just stinks. All I can tell you is that your life is worth living. We cannot see what is around the next corner, so just sit tight and wait to see what is in store for you. I have found that in spite of being so incredibly sick, I can still do good things for others. I have made friends with an 85 year old homeless lady and try to meet her twice a week to help her out. Such a small thing, but reminds me of who I am. My husband says I would give all our money away if I could! He says one day he will come home to find bunk beds in the living room filled with homeless people 😝 My point is that do not throw in the towel, believe me I have come so close to doing that so many times. But each time I talk myself off the edge, remember that life can be goog,even if it is hard and lonely. I will be in touch. God bless. Love, Kelly xx
Hey, luvhair . You are definitely NOT alone. We have all been there. I, too, suffer from depression, and have since childhood. Getting MS at age 57 surely didn't help. It ended my successful career as a trial lawyer and boy, did I spiral downwards. I am assuming that you have seen a neurologist (hopefully one who specializes in MS) and are receiving treatment for the disease, whether that includes medication or not. If you haven't, that's the first step, and when you go, make sure you describe all your symptoms including the depression, and neuro can probably refer you to a psychiatrist or psychologist who can help with the depression. If you already have seen a neuro and are under the neuro's care, I would call his or her office and see if they can refer you to someone. I don't know where you live but there are also community health centers that can provide you professional care on a sliding scale or at no cost, depending on your income. Depression can be managed, but it sometimes takes awhile to determine the right treatment, so don't give up. You will be far better able to cope with your MS if you don't wake up every day feeling like you'd rather stay in bed and pull the covers up over your head. It's not an easy road, but the you've already taken the first step by recognizing that you need help. You mentioned your son, and he obviously needs his mother, so take the second step and find help soon.
luvhair you have been thru so much.Sometimes looking back doesn't help but what i see and hear is a very strong person who gives back.Your post helped me.I can feel so much of what you have gone thru.There is a kind of PTSD that goes with this life.The death of a firend, health issues and getting thru the medical maze while trying to have a life.Best wishes and yes, I'm here!
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