Hi, I was diagnosed 2006 with RRMS. I am 50 years old. This year has really been hard on me. I have experience the MS hug about six times so far this year and it seems that each time the MS hug gets more painful and is lasting longer. I also deal with fatigue so great I am having a hard time standing up straight. I am on the rebif MS treatment and the 12th of this month had an MRI and that shows no new lesions. Why do I seem to be getting worse? Each day is becoming more of a challenge. I am married to a wonderful man and he helps me with everything. Sometimes he is too helpful. The reason I say "too helpful" is because his helping me makes me feel more and more useless. I know he helps because he wants to make sure I do not over do it. I have four wonderful grandchildren. Ages 4, 7, 9, and 11 years old. I love getting outside with my camera taking pictures. I enjoy making dreamcatchers. I make them so I do not get bored out of my mind. I also love to read mysteries and historical books. I can play the guitar but for a while I just get too tired and choose not to pick it up. My husband and I would play together.
I miss the person I use to be.
I cannot enjoy nature walks anymore due to toe drop and fatigue. My husband and I used just take off walking and walk for miles, now I am lucky if I can walk the fifty feet to my car without falling. I hate having to stay in my home, not being able to get outdoors to enjoy myself.
2016 has not been my year.
What if anything do any of you do for the MS hug?
Written by
amyshif1
To view profiles and participate in discussions please or .
Hi Amy, what you have written, describes most of us on here, so you are not alone with your feelings. It is really hard to accept, I don't think we ever really do we just learn to cope the best we can. As for the hug, there has been a couple of posts about it on here this weekend, so if you scroll down you can read what other people have had to say about it. As for your foot drop, there are devises out there that help you pick your foot up, such as the Bioness L300, which you wear underneath your knee and it sends electrical impulses to your brain which in turn helps pick your foot up. There are people on here that has had and still having great success so maybe it's worth reading up about. In the meantime post a picture of your dream catchers, we all are interested in crafts, keep your chin up, take care, blessings Jimeka
Welcome amyshif1 so sorry for your rough year. I hope 2017 is better for you and everyone else. I've read that the hug is related to spinal lesions. There may be meds or PT exercises that can help? By the time I realized that was what I was experiencing, it disappeared (6 weeks later).
As jimeka said, you are not alone. Many of us feel the losses of our former selves, the dependence, and our shrinking worlds (due to immobility, fatigue etc.).
Humor, finding a new self and this chat room help. And yes, feeling productive is very important
Have you talked to your neuro about symptom management? It's not all about MRI lesions.
I know that as my MS progresses (no new lesions since diagnosis 8 yrs ago) I feel like a ball of yarn unraveling. The smaller that ball of yarn gets, the more rapidly it seems to unravel.
Hi amyshif1 welcome to our awesome chat room. If l do say so myself 😁 Even if l hate the reason. 😕
As you can tell we are a friendly bunch. And try to be as helpful as we can.
Like the others have said there are medications that can help with fatigue. Along with braces for foot drop. 😊 I have never had the MS hug so l don't know anything about it, bit like the others said we have had past discussions on it. Hmm lm real helpful here Arnt l? 😁😅😁
I do not know if you have tried any of them but there are some meds that work well for fatigue, at least for some of us. Provigil and Nuvigil (spelling may be wrong) are two of them. The generic form of Provigil is what I take and it has really worked well. You can also get a brace that stops the foot drop (my husband wears them due to his CMT) or there are the nerve/muscle stimulating thingies that some of the other members here can tell you about for foot drop also. Do not give up, not everything works for everyone but there are things to look into.
Just ask on here and you will find lots of possibilities and lots of understanding souls.
Thanks for your reply Morllyn. My insurance would not cover the Provigil so my doctor prescribed Adderall 20 mg (don't know if the spelling is correct). The Adderall does not help too much with the fatigue.
My doctor tried me on Ridalin (spelling?) first, the drug they give hyperactive kids. It worked but made my blood pressure to high.
Sorry about the insurance not covering it, I have gone through that with other meds. My doctor said that if we could show that we had tried the cheaper options and that they did not work then they would pay for the other. I don't care which one works just want one that does.
Morllyn Hi Morllyn I'm still trying to get my Nuvigil back. It was the only one that I benefited from. 😡 I'm not giving up though. I've tried all the other meds for the fatigue and none of them helped me like the Nuvigil. Like that old saying goes "if it isn't broken don't try to fix it". That was always my mothers motto and I agree 100%. Just give me what works.
Hello lois52. My neuro prescribed Provigil but my insurance would not cover it. Now I am taking Adderall 20mg twice a day but this does not help too much. I have been through the physical therapy and the strengthening exercises do help a little. I do not have a brace for the foot drop and this is something I plan to discuss with my neuro.
My grandchildren do live close by and I do get to see them often. They are the reason along with my husband and sons that I do not give up the fight.
amyshif1 Hi Amy. I am lucky I have never had the MS Hug. At least I'm reasonably sure I haven't. I'm sorry to hear you do though. I agree with you as far as this year of 2016 really bites. I think it was the one and time I hit my lowest point of self esteem in my entire life. Mostly my "so called" depression was caused by my work situation and a culmination of other things I have been trying to work through. I think I'm back on my feet again and have regained some of my confidence back. I wish and pray the same will happen for you. I too wish I could have my life B/4 MS back. I miss being outdoors and just walking around without becoming so tired after I end up on the sofa immobile for 3-4 days after. You are lucky to have the support of your husband. I know mine loves me and we've been married almost 37 years now. But he's tired of me unable to go places with him as we used to. He's 71 and had triple bypass in 2001, the day b/4 911 happened. I'll never 4/get that day. This past May he had one stint put in the main artery they grafted 16 years ago. Now he's back to doing anything he feels like doing and still working full time with lots of overtime. I'm a little envious because I can't do that anymore. But hey chin up and move on is what everyone has been telling me so I'm trying. We'll get through it. 😜👍
Hi Amy. I understand how you feel, and I hope this helps. I have burning sensation in the area where I used to get the MS hug. Both are very exhausting . I finally got help. Cyclobenzaprine is for muscle relaxing and it really takes the pain away enough to sleep through the night. Ask your Dr. for it.
My neuron prescribed amantadine and Modafinil for my terrible fatigue. So days it's all and can't do is go to the bathroom and some days do well dir short periods. But both of them together have not made a believer in getting energetic though. But I'm still waiting for a miracle. I'm tired of being tired.lol. Good luck
amyshif1 how have you been? I happened to run into your post this morning. I was diagnosed in 2003 and rare MS patient from Asian country. I also take Rebif and I feel like the way you described on your post.
How are you doing? I somehow met my husband fell in love in a different country. Now I've been married and lived in state for 13 years. So Konnichiwa from a very hot state to you
Hi ya !I am also married to a very supportive man, I had to tell that sweet thing, if I can do it let me as long as I can,so I wouldn't get that "useless" feeling. the Ms hug was my first sign. My GP told me if it lasts 24 hours go to the ER for steroids,thank goodness never lasted that long.I get mine when I am on my feet too long, I don't know how many ways the good lord can tell to sit down ! pam
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hey, new to community. Just a bit about me. 😎
I'm New Here
New here- How do u stay married with MS??
Family Issues
Hi I'm new to posting here
