Diagnosed at 62 years old, MS has really thrown us through a loop. We are struggling to find providers that can help and not hinder his symptoms. We love our MS specialist but she cannot prescribe opioids for his breakthrough pain in shoulder. Went to a pain doctor who is trying to get him to swap from Baclofen to Tizanidine, which it took him months to adjust to. He also added gabapentin for nerve pain and has lost all his energy and joy! Any suggestions would be helpful, thank you.
Hello, I’m new to this community as my h... - My MSAA Community
Hello, I’m new to this community as my husband was recently diagnosed with MS.
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mslifewife
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Welcome, I am sorry for your husbands diagnosis. It is a big adjustment for both of you but keep searching until he find a med that works for his pain. I went through bac, tiz, and gab before I found tramadol, which I was given for a badly sprained ankle, and it has worked best for ms tightness, spasticity, and neurpathy pain. Good luck to you both🥰
Thank you Starlight5. Baclofen helps for spacticity, but when he does the exercises and stretches it aggravates the nerves in his shoulder. He did try tramadol before he got his diagnosis and started bac, so maybe worth adding to his bac?! 🥰
The "nerves in his shoulder" are peripheral nerves. Such pain is not a central nervous system problem caused by MS. He really, really needs to be doing the exercises and stretches despite their being painful. Pain relieving medications are not going to fix his shoulder and they are not likely to do help with the pain. He must keep his shoulder mobile and strong in order to have any hope of having a comfortable and useful arm again.
If he has always been a strong man and provider, then he's probably feeling pretty useless right now. It's important that we feel needed, no matter what, so if his physical issues are preventing him from doing his old routine is there some part of "your" job that you can suddenly need his help with? Something that you know he can do without aggravating his existing pain. It could even be something as simple as "I'm sorry you can't do X anymore, but I'm really enjoying your company over my morning coffee" or "Folding laundry is a lot more fun when I can chat with you."
Getting an MS diagnosis is usually a shock, so it'll take time for both of you to grieve and adapt. Keeping him interested in life is important, but the burden may fall on you to find ways to make him smile again until he adjusts.
I hope you get some responses from the men on the forum. We have a bunch of terrific guys here who'd be able to give suggestions from the male point of view.
Thank you for your reply and insights. It’s hard when we were thinking towards retirement and what and where we would be to enjoy it. Then, suddenly we have a new perspective on life and quality of life moving forward. Finding things he can and wants to do is the biggest challenge at the moment. He can get disability but doesn’t want to “give in!” It’s hard keep positive at times, but getting meds right for him is the first step to a better quality of life 🥰
Convince him to go for Disability. He didn't ask for MS, didn't cause it, and couldn't have prevented it. SSDI isn't Welfare. It's just an early withdrawal of the Social Security he (presumably) paid into all these years. He EARNED that money! I could be wrong, but I don't think he'd be getting any more if he waits. I understand that he doesn't want to be seen as "disabled", but the ability to fall back on that label really helps sometimes and may provide unexpected benefits when you need them the most.
I was embarrassed to go that route, but I'd reached the point where I really couldn't work anymore. H*ll, I was lucky to be able to dress myself back then! If I hadn't been awarded Disability, I wouldn't have been able to pay my bills. It took a loooong time to adapt, because I felt so guilty about not working, but my life is so much better now than if I'd kept struggling. It also wasn't fair to my employer to stay there and keep calling off. I was covered by FMLA but was zipping through those days like crazy.
Research your financial options. MS or not, you're entitled to enjoy your retirement!
Thanks, we are starting to investigate all our options . He can still work , although it drains him, but we do have time to get all our financial ducks in a row.
Welcome. I'm so sorry that you and your husband are dealing with all this. As far as the gabapentin (having MS and pain pretty much guarantees that every doctor you see is going to try to "help" you with gabapentin, which is great if you can function on it.) If not, ask your husband's doctor how long it should take for his body to adjust. If you are past that time, tell her he feels like a zombie and he wants to taper off of it. Is the pain from tight muscles? If so, tizanidine and baclofen can both make you feel pretty tired, although they can be kind of a necessary evil. You just have to tell them that the muscle relaxers have been of limited value so far and he is really suffering from the pain. Tell them Tramadol helped earlier. Thanks to the opioid crisis, it's difficult for the people who really need pain meds to get it. But you do have to keep voicing that what they're doing isn't cutting it, as the squeaky wheel is more likely to get the grease. Of course, you need to follow any instructions for imaging, etc. You could also ask if he's a candidate for botox injections. They help, but you really have to poke around and identify the painful places to point out to the doctor, which can be challenging.
This is a scary time with his body doing strange things, and it's hard to get used to. For me, anxiety was really high at that time. Once some time goes by, the symptoms may calm down a bit, especially if he has the relapsing remitting form.
There is a wealth of shared experience on this site, and I'm glad you're here. I like that you're not afraid to ask for help. That's half the battle!
Thank you for the feed back. A lot of the time he is feeling a little depressed rather than anxious, I have started to go to appointments with him now as he just accepts some of the advice the doctor gives him, whereas I try to really advocate for him and ask questions.
Yay for you! My husband has Never come to an appointment with me.
You're welcome. After reading Bettysmom's response, I should clarify that my advice about pain meds and botox were based on me assuming that his shoulder pain was from spasticity or muscle pain. I jumped to this conclusion based on the mention of baclofen and tizanidine.
I based this my own experience of constantly tight, very painful neck muscles that radiate into my shoulder. Of course, finding the cause is important, if my assumption was incorrect!
Sorry I wasn’t more specific on type and area of pain, I find this forum of heat benefit, thanks
Not your fault.😊
I think he needs to have an orthopedic workup to find out what is causing his shoulder pain because it's very unlikely that the MS is the cause.
Thanks for your post. This whole journey started with his shoulder pain. We have had MRI’s with and without contrast, on his shoulder, neck, and brain, work ups with ortho doctor, neuro doctor and finally an MS neurologist. The lesions are in his brain snd spinal cord that effect left shoulder and hip. Unfortunately, the shoulder pain will always be there, and his hip is more general weakness. We both wish it would have been an easy fix, but unfortunately not!
Very interesting. It is virtually impossible for pain that is localized to a joint to be caused by a central nervous system lesion. It is much more likely to be a peripheral nerve inflammation or impingement. I would question that his "ortho workup" was done by a competent orthopedic specialist physician. Your husband needs a second orthopedic opinion. Remember, orthopedists are surgeons, and if a problem is not surgical, they may have no interest in exploring further. And he should be getting physical therapy for the shoulder to keep the muscles from atrophying and the joint from becoming "frozen." There's a good chance that a physical therapist can make a more accurate diagnosis than what your husband has gotten so far.
Thank you BettysMom. The pain is in and around the shoulder (sorry for not being more specific) - originally he had a full heart work up as the pain moves around and thought it was his heart. It was actually the neurologist who finally identified the lesions causing him the burning nerve pain. He’ taking baclofen for the spasticity and does pt twice a week for hip and shoulder. Whilst he’ll never be pain free, he sometimes needs a little extra help . Laying down helps pain but it’s not always an option.
I’m glad you reached out to the MS community here. We can provide insight to our own MS journey. MS is different for everyone, it depends on where in the brain or spinal cord that is affected. For me it’s been 29 years and to be honest the first few years were difficult. I recommend you reach out to them Multiple Sclerosis Society to find resources to help you.
Thank you for replying, and I will reach out to msaa for help. I wish you and everyone tackling this disease a better tomorrow
I commend you for reaching out to learn how to help him. What helped me a lot to gravitate past the diagnosis was to dive into art, which has always been of interest to me. I wonder if he started doing something that has His interest? Model railroads, or whatever. It does help occupy the mind off your troubles.
That’s what we are trying to find at the moment. He loves woodworking projects and golf - two things he cannot do anymore! I did get him a sketch pad, but no inspiration at the moment. He reads a lot and does puzzles etc. I guess once all the meds settle down it’ll be easier. Thank you.
For me, reading has been a wonderful escape and a way to keep my mind active. The only downside is that it makes it easy to sit for long periods of time. I have to make a point of getting up and doing a few things around the house periodically.😊
He’s pretty good at setting his timer to get him moving 😀
carolek572CommunityAmbassador
Welcome to the forum, mslifewife . You are an Angel for reaching out to this forum on behalf of your husband. You can certainly look at mymsaa.org for more information about ‘ms’, and you can reach out to this forum anytime. Look forward to hearing more from you! Keep Smiling 
Thank you! I’m sure I’ll be asking for advice and your wisdom as we progress on this journey 😊
welcome to the group that nobody wants to belong to . Talk to a neurologist who specializspecializes in MS
Thank you and I really appreciate the help and support here. He does see a neurologist specializing in MS. However his pcp and pain doctor want to change meds without under standing ms or the effect of changing meds on him.
Try going to a naturalist specializing in vitamins and mineral herbs
Take a complete blood test and see what you are missing
good luck!!!!!!
I will, thank you! 🥰
Hi, mslifewife. I hear you. I am 3 years in, diagnosed just after my 60th birthday. Life changing. But not life ending. I am rural, & have a less than stellar neuro. So to learn more, I started watching Dr. Aaron Boster on YouTube. Bless his heart, he has taught me more about M. S. than my neuro 'knows.' I just left (last week in fact) a job that I loved. No disability benefits, but I am still waiting for that. Fifteen months so far since I hired an attorney & filed for benefits. I was told since I had a "seated" job as a church admin assistant, (riiight, I was on my feet 7-8 times an hour all day), I was less likely to receive benefits than say - a construction worker. Not sure why I went into that story. Sorry!
Can you find someone who can prescribe opiods? I take Tramadol twice a day. It helps somewhat. I am glad you are here, but so sorry for the reason. Prayers for both of you as you start this journey.
Thank you for your comments and I will certainly check out the YouTube videos. So sorry to hear about your job and hope you get your benefits soon. It is a lot to take in and understand about the disease without all the legalities of disability etc. I guess they say that life is a learning process, it just gets a little harder the older you get! Here’s to a happier and healthier New Year.
Check out the NMSS. They might can give you some referrals.
Thank you!
what about trying a diclofenac cream or lidocane patch
He did and no relief unfortunately! Thanks for the suggestion though
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