Last reply 1 year ago
New on tecfidera+ depression

Hi guys,
Took me so long to find the strength and admit that Ive got ms but i cant deny it anymore,so finally i am here talking to you guys…i feel u ll be the only ones understanding
I am on tecfidera since dec2016
Ive been diagnosed in june2015, but I didnt want any treatment coz I truly believed I can manage it with vitamins,good diet and still living in a same way I was before. So had a course of steroids…they did help
but it wasnt happening…as all became just too overwhelming, as being on a strict diet limited me so much, I started to be jealus about everyones life…my boyfriend was trying his best…but somehow it wasnt enough for me…i felt i am going down every day more and more, blaming him and everyone else including myself. There was another relapse in aug15… had another course of steroids….in february the symptoms flare up again…but i thought they will go away soon by themselves….but it wasnt happening…from april I started to get blurred vision on my left eye…but it would go after a while….i thought its because im just too tired!
I was hiding,preffered to be alone than with ppl,constantly complaining…unhappy,scared…and than boom i woke up with blurred vision and vertigo…i never experienced nothing like that…
I know its already too long now…I ll try to make it shorter.
So my gp assumed i had inner ear infection so i got reffered to the ENT (waiting time 5months) my symptoms very getting worse and worse…could be alone but if my boyfriend would stay with me i would put all my anger on him!
Now the symptoms faded almost completely…but my bad feelings stayed …. i was a flight attendant on long haul operation…which i had to give up…now im in the office on temporary assistent job….which i should be satisfied….but i am not…im just too tired…cant cope with it …seeing my boyfriend having a normal life…he prefers to go than be with me…feels like he has someone else by now….
Could you please let me know how your partners,family friends deal with you and this situation.
I am constantly cancelling meetings with friends ..im just too tired…too stressed,cant focus.
Does anyone takes antidepressants with tecfidera? I believe i am in a horrible depression…:(
Did the psychotherapies or any other therapies helped?
I appreciate every single word…
Thank you so much
With love

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.

I am sorry to hear you are having such a hard time. My wife was diagnosed in November of 2016 and we understand the ups and downs to a degree for sure.

I thin you should surely talk to your dr on medication for depression. There is a video that discusses a fact that people with MS have depression at much higher rates then other dieases like als when MS is typically milder then those. It draws the conclusion that depression can also be caused by the MS and it can also pass and you might just need something to help you through it.

We have been following the overcomingms.org protocol and the diet seemed strict at first but we have found more and more foods that are interesting and we really love. It’s takes a little time doing that but I think it’s worth pursuing in addition to the Tecfidera (which my wife is on as well).

How has your MS been since you started Tecfidera? Relapses tend to slow down as you get older as well. What age were you diagnosed at?

Hang in there. Keep us posted on how you are doing.


babygirl
1 year ago

Hi,

Thank you for your words. I was diagnosed at age 25.
My relapse was very bad last year,i couldnt walk,dizziness,vertigo vomiting,pain …i could name 100s of symptoms…compare to that now i can function normally, the only thing that has left is the blurred eye…but i think its also fading away.
I am under losds of pressure….even like that no symptoms…yet. Seems like the medication does its job.
I stopped the diet last year coz i was overwhelmed…even thought i have a boyfriend foodwise i was all alone and got some heads up that eating clean should be fine too. I am just too tired to do anything.
Feeling i am in a wrong relationship but scared to make the step forward…if i ll be able to manage all by myself(especially moneywise).
Such a nice husband that you are, i admire man that can change together with their partners…and comfort them in hard times.
I believe as soon as i get back my mentalhealth i get back my energy,and the problem solving skills.
So hoping for that…


stumbler
1 year ago

Hi @babygirl , taking a diagnosis of MS on-board does take time. A year or more is quite normal, as you need to go through a grieving process, which is an emotional rollercoaster ride.

Now, MS may be your diagnosis, but it affects everyone close to you. To most people, MS is an unknown quantity, so there is a problem with understanding. They don’t really know what to say or do, as they don’t want to risk harming you, physically or emotionally.

We just have to accept that life can throw “curve-balls” at anyone, at anytime. And, one has been thrown at us.

Yes, do go down the anti-depressant route. We all need some help now and again, so it may just be a temporary measure for you.

Keep that ENT appointment. We may have MS, but that doesn’t stop us having other conditions too, which may have better treatment options. One condition that potentially needs eliminating is Benign Paroxysmal Positional Vertigo (BPPV). I’m not medical, so that is just an example. 😉

You’re on treatment for your MS now, which seems to be making a difference. So, now’s the time to start being kind to yourself and stop beating yourself up. You haven’t asked for any of this and haven’t done anything to contract it.

So, avoid putting yourself under so much pressure. This in itself can make symptoms worse and make your MS progress.

Once you start looking after yourself, you’ll be able to start looking after your partner.

@babygirl

I thought I replied to this but somehow my post didnt quite make it, probably forgot to hit submit.

So a couple more thoughts maybe to consider. A lifestyle change seems to have lots of benefits down the road and is complimentary to a drug, but its not a fast change. It takes a while for your body to really change its several. Like I mentioned, we follow OMS and professor Jelinek says it can take up to 3 years to get the full benefit of a lifestyle change. So even on OMS it is recommened to use drugs in the beginning when you have active MS thats aggressive as you appeared to have.

Going full on and changing everything is overwhelming in itself. My wife and I decided to lead a healther lifestyle and made a decision to move in that direction for the long term. I think I would give yourself some room to add exercise (helps with recovery), mindfulness (helps with stress), diet (helps with a lot of things). I think there is science to show all these things are also effective with depression. We found the key isnt to say its all or nothing, but rather each week/month we opted to add something we werent doing before. In this way it went from being overwhelming (and a bit depressing) to something that made us feel good because our bodies were getting stronger, but also feeling like we accomplished something.

Taking small incremental steps towards a healthier lifestyle made it work for us. An example for us was adding a green smoothie each day instead of soda. We got one of those magic bullets that arent too expensive and would add greens and frozen fruit. It took a little getting used it, but really not to bad. Its a bit of work doing, but it was something we decided to do regularly. That gave us a starting point for adding stuff like flaxseed oil (which we dont like the taste of but cant notice anymore in the smoothie).

I am not sure what will work for you, but it sounded like you went all in which is great. I would just encourage you to not give up on your initial instinct. All the benefits of a healthy lifestyle will pay dividends with the medication in combination.

Its great you seem to be recovering well. You are young and probably have a better reserve for recovery (my wife and I are in our 40s), but you have every reason to believe you can have a long and healthly life. My wife also is impacted a lot by stress. Mindfulness is something we werent super excited about initially but whats amazing is changing your breathing forces the rest of your systems in the body to match. Just thinking about things a little differently with mindfulness seems to help. She used to sigh during the day before. I always thought that was bad she was so stressed. Little did I realize she had instinctually found a way to relieve the stress pressure.

With the mindfulness practice we just have more tools available. The analogy often used is picture yourself in the house watching a storm, instead of being in the storm. Storm is still there, just your vantage point is a little different. Another thing we learned is that if you watch people laughing, you cant help but to laugh. Kind of odd right? Part of the thing is your body is wired to start feeling the way you behave. We find it an easy thing to do to watch a show that makes us laugh and count it as “medince”.

Lastly I was I going to say the diet changes we made, went from really missing candy etc to really enjoying new foods we would never think were good. Its a weird change your body makes in what it craves over time. I wouldnt have thought it and I cant say I am fully there, but mostly I dont want a chocolate bar any more (sometimes it calls me, but most of the time I really dont crave it). Strange but true.

So sorry for the long rambling post, but its not all misery being healthy. Its not easy and takes some work, but on the other side, its been more of a joy then a scarfice. Not what I would have expected.


freya
1 year ago

Hi @babygirl, sorry to hear you are having such a difficult time. 🙁 I was also diagnosed recently and started Tecfidera in December 16.

I would definitely say go to get some help with your depression. If you don’t mind taking anti-depressants and your GP recommends it, that sounds like a good option. I’ve been on them in the past (pre-MS) and they made an enormous difference. I’m now taking amitryptiline for nerve pain, but this is also an antidepressant (but I only take a very low dose), and helps me sleep. Makes an enormous difference. Soon after my diagnosis I saw a councillor at an MS therapy centre because I was struggling to come to terms with the diagnosis. It was hugely helpful just to be able to talk about all my worries with someone who was completely objective.
Are you in the UK? If so you should be able to get to speak to get counselling on the NHS (I think they call it Talking Therapies) fairly easily.

You are coming to terms with life with a permanent illness that will most likely have a significant impact on your life. The biggest thing I got out of the counselling was the realisation that it was ok to feel upset, sad, and to grieve about this; I had been trying to make light of it because it wasn’t cancer, I wasn’t dying, my symptoms were improving, and there’s a fair chance I’ll be able to live a pretty normal life. But the diagnosis and a massive relapse were traumatic and something I needed to deal with. Sounds to me like you too could do with some help with coming to terms with it properly.

Stress is a known cause of relapses so my main focus now is to do all I can to reduce stress in my life.

Re. the diet, I’ve had a different approach to this. I read this article lately and it really helped me: https://multiplesclerosisnewstoday.com/2017/03/01/no-ms-diet-miracles-for-me/
I know many don’t agree and I’m not in any way trying to say that diets aren’t helpful, because I know for many they really make a massive difference.
But, like you, the idea of a really restrictive diet overwhelmed me and I couldn’t cope with that. I love food (especially meat!!) so cutting out on certain things just made me feel upset and like the MS was taking over my life. I don’t know how you’re coping with Tecfidera but I’ve had a lot of side effects and need to eat it with a high protein, high fat meal like they recommend to stop me from feeling worse.
If diets are becomeing difficult for you, think very carefully about whether it’s the right thing for you right now.

I’ve decided to deal with my MS in phases. First, get the drug treatments established properly (still not sure if Tec is right for me because of side effects), and come to terms with my diagnosis with the help of counselling etc. Second, make small changes that I can fit easily into my life (e.g. start excersise, take vitamins, make small healthy adjustments where I can). Once this is all sorted I am going to see if I feel I need/want any more significant dietary changes. That’s just my approach and might not work for others.

But I would definitely go to your doctor and ask for help with the depression first of all. You will be able to cope with all your other challenges (work changes, relationships, etc) so much better if your mind is in the right place.

Allow yourself to feel upset too though, and give yourself credit for having gotten through what sounds like a pretty shitty year or two. Sounds to me like you might be stronger than you think. 🙂
Feel free to send me a private message if you want to chat more
x


babygirl
1 year ago

Thank you to all of you for your tips and heads ups…it means a whole world for me right now. I went today to the GP she prescribed me some medication for anxiety.
And we had a talk I told her what worries me the most (which is to be alone for this,and my partner seems to be backing off)and she came to a kind of a conclusion that my partner makes a lot of impact as I dont get the support from him I would need and require.
Which is so sad…as I love him to pieces…but its just really seems like he started to live his life without me(he is 26, quite young,he likes parties…always with friends), many times I am on my own trying to figure out things…i feel i would need just his presence and careness,but seems like he has enough of me and my constant problems. I admit I am extremly over sensitive and I cry for almost everything.If I wouldnt love him,I wouldnt worry….but…:( but somehow I understand him…as I have a breakdown quite often. Even myself I have enough of me!!!! I am almost every week trying to explain him that I need to feel his love atm. I seem like begging him for his attention…as more I do…as more he wants to escape..
He is not fan of antidepressants and councelling either.
But I will try…i need support from somewhere!

I try to keep up with him…but it seems does more harm than good to me…i just got sick( taking antibiotics) and now worrying again how my body will react….seems like my life became such a mess and a magical circle that I cant get out of it easily. I wish to start the antidepressants but dont really want to stress out my body with more medication.

I really admire all of you, you went through the same but with such a calm attitude….! you are wonderful to me,not even knowing me! Thank you

I have a question I just signed up with TIME TO TALK, but my first appointment is in 1 month….do you know where else I could find someone I could talk to, asmore I keep it inside as more everything hurts.

A huge thank you for all of you!!!!!!😘


stumbler
1 year ago

@babygirl , you’re amongst a lot of friends here, but we can only provide cyber-hugs.

As far as counselling is concerned, contact your local branch of the MS Society. You can find them here :-

https://www.mssociety.org.uk/near-me


swinners
1 year ago

Hiya
probably too late … but I came across this after searching about DMD and depression. I was diagnosed in 2006 (swallowing problems and altered sensation creeping from my toes up to my midrif – the ‘MS hug’). I have had brushes with depression pre-diagnosis. In 2012 things changed and I had to give up running (which had been my main sport and sanctuary). I was put on Avonex/interferon. Within 8 months I was experincing a major depression. I thought it was me being weak and needy. I felt my husband didn’t love me. I was put under the community psychiatric team over Chrsitmas (with my psychiatrists saying he had a clinic FULL of suicidal people all on Avonex). My reason for writing is to say I resisted anti-depressants fiercly – I felt they represented failure. I was wrong! I was put on mild anti-anxiety meds (sertraline), and after 6m I switched to Tecfidera too. The depression lifted completely. I continue on the Sertaline…very happily. I also make real efforts to go out everyday, exercise as regularly as I can. I tried (and failed) the OMS diet, mainly cos too much effort to make family meals with NO sat fat. And crucially for me (and maybe you @babygirl), I focused getting support from people other than my husband. One person cannot provide everything to you. I know how awful it is to feel pushed aside. Life will get better, but I suspect the tecfidera is not causing the depression (certainly it is one of the few DMD therpaies that does NOT have it in the side effects list). Be kind to yourself. Life with MS is stressful, but is can be dealt with in stages as many have suggested – one day at a time

Post Comment

You must be logged in to reply to this topic.