Wow, time flies by when you aren’t blogging! I was doing good for a while and then I hit a real low with my pain and depression and life just seemed to stop. Of course there’s not much one can do when feeling like shit… except of course, obsess about how you are feeling like shit.
Meds can be the best thing ever OR they can just fuck with you, excuse my language. I was on the same med cocktail for years. I knew and know that it’s the integrative approach to managing Fibromyalgia that makes life… well, manageable. BUT, I gotta tell you, my meds were seriously making my life Hell. I didn’t realize how truly fucked up my crisis was until I started really contemplating suicide on a daily, almost hourly basis. I lived through about six weeks of the darkest time I have ever experienced. It has taken me a couple weeks just to really realize how close to the edge I was.
Thank God, and I do mean the big guy above, I had the sense of mind to call for help. I talked to my psychiatrist, I talked to my primary care doctor, I talked to the Pain doctor and nurses and I talked to my OB-GYN. Kaiser was awesome, they helped to save my life. Everyone was persistent in making sure I did something. It was frustrating trying to convey what I was going through, but I spent hours, literally four and five hours scouring the internet for information every day. I was obsessed about the latest news and information on Fibromyalgia, depression and the approaches to manage. I finally concluded I needed to change my meds and thankfully, working with my doctors I pushed hard until I got everyone on the same page with the approach I wanted to take.
You know, I am not sure if it was the pain that aggravated the depression or the depression that aggravated the pain during this crisis. I do know I have been under a ton of stress; the weather was constantly changing, it was raining and then sunny every other day; and Lord knows (as all of you do), that sleep was non-existent. All of this added up to not seeing any light at the end of the tunnel. I felt like I was a huge burden on my husband, family and friends and just couldn’t see how I could live out the rest of my life in that hell.
How could I communicate to anyone that I was feeling like I just needed to get out of my misery? It’s weak, it’s unfair, it’s hurtful… but most of all it’s SELFISH. I know all of this and I didn’t want to hurt anyone, most importantly my kids. This was the only thing that kept me going. I didn’t know how to talk to anyone, I am a very private person – and the thought of showing, what I felt was weakness, was unfathomable. I couldn’t bring myself to say it out loud. After days turned into weeks and the weeks just kept passing and things weren’t getting better – I finally talked to my husband. To be honest, it made me feel even worse. He was so devastated (and rightfully so), I just felt like an even bigger loser with a capital “L”. What the fuck was wrong with me? I know it’s not a weakness to commit suicide, you must have commitment and the strength to follow through with the act – but it is quitting, quitting on life, which is a weakness to me.
Well, I am happy to say, now that I am on the other side of that nightmare. This was not a case of suicidal depression. This was, in my mind, for the most part due to the meds (like 99.99%). I read a lot of reviews from people taking Topamax that they experienced the same thing I did. I felt so thankful to know I wasn’t the only one. Topamax was my savior drug when I first started taking it, and it worked for a long time. I was very confused as to why it betrayed me so suddenly without any indication. This drug has been used a lot for fibromites to help with the nerve pain. If you read up on it, it has all the side effects that are symptomatic of Fibromyalgia. I asked all my doctors how I would know if my issues were due to the medication or my FMS. Each doctor said, it was a great question, and that they didn’t know. What the hell? I wanted answers, instead I got confirmation that my concern and confusion was a “great question”. In the end, the mystery of whether or not the drug was making me worse, the many reviews and the way I was feeling were the basis for my decision to get off that drug.
I decided to take a different approach and manage my depression and my pain separately from a drug perspective. I was on Cymbalta for both and I chose to stop. Again, not sure whether or not that drug was an issue for me as well. Oh my Lord, have you seen all the issues people have with getting themselves off that drug? There is a website just dedicated to all the issues with going off Cymbalta. Thousands of people have provided their nightmares out there on the internet, I was extremely nervous about stopping the drug. But I know that after literally spending hundreds of hours researching options, the one that I have chosen is what I want for myself. The options I reviewed: going all natural and off prescription drugs, I looked at diets, I looked at medical marijuana, I read everything I could possibly find. At the end of the day I decided to go with new meds and a gluten-free diet.
I am now on my last few days of Cymbalta and I am feeling markedly better than at my lowest point. I am off Topamax and I went through one cycle of PMS without feeling like I was in the pit of Hell (for the first time in at least a year). I have taken five weeks to cycle off Cymbalta, I decided to take it much slower than the doctor advised based on everything I read. I went down 20mg a week and I don’t think I felt any major side affects. At the same time I slowly started and increased my new anti-depressant. I am also on my third week of being almost 100% gluten-free. (I am still learning what it means to live a gluten-free life.)
Due to the interactions, I have had to wait to start taking my new pain medication until I am off the Cymbalta. It hasn’t been easy but, trust me, I would much rather have pain than the depression I was experiencing. It’s been a worthwhile process. I am starting to see friends again, which is a sign for me that life is becoming bearable. After months of living in greys and black, I am starting to see shades of color.
The lesson I learned is that I should never feel suicidal. No matter how bad things feel or seem in my mind – suicide is not an option. I need to review my meds on a regular basis and make sure that they are working. I know that I have clinical depression and that I need to manage it. I am responsible for my own health, I need to take it seriously and continue to make it a priority.
I’ve been reading FibroWHYalgia, (an excellent book, if you haven’t picked it up I highly recommend it), the author Sue Ingebretson says that making “I am” statements is not good for your psyche. I have really thought about that lately and I notice that I say “I am in pain” almost every day. If I am going to manage my thoughts, understanding that what you think is what you are, saying “I am in pain” dooms me to be in pain. It’s a great point! Changing the mindset is another new challenge for me.
This is a long blog, but it’s so important for me to share with you that you need to monitor and manage your health as diligently as your highest priority. You need to watch for signs that something is wrong and not assume it’s “you”, that it may, in fact be due to your medication. I urge you to journal your daily pain and mood levels, in addition to your exercise and what you are eating as well as the medications and supplements you are putting in your body. Keep in touch with your doctors (don’t let them forget who you are!), make them listen to you or get a new one. YOU are responsible for your health and no one but you can determine if what you are experiencing is “normal” to you.
I am a very private person, but I feel strongly that if this can help someone, it’s important to share. Thank you for reading. Take some time to relax, meditate and breathe.
- My Pain. My Meds. My Pain. My Meds. (myfoggybrain.wordpress.com)
- To those who are family and friends of Fibromites (myfoggybrain.wordpress.com)
- Depression: Coping With Anxiety Symptoms (webmd.com)
- Depression: A Common Fibromyalgia Symptom (everydayhealth.com)
- Questions to Ask Your Doctor About Fibromyalgia (everydayhealth.com)
- Fibromyalgia Medications (everydayhealth.com)
Great post. I love that it sends a strong message about the importance of self-advocacy, while reminding us that we do have some control in this disease and it’s processes. After months on Topomax, I began to experience the same as what you described. It had initially been awesome. Months in, I had periods from Hell. I was crippled with back pain, had kidney stones, urinated blood and began having seiorus psychological issues; anger, mood swings, hopelessness. It began to destroy my marriage when I finally said enough. I really wish more Doctors had more inclusive knowledge as to the significant effects it can have on our mind and body. Thanks for a great piece!! ~Stacey
Pingback: Recovery Part 2: Pain, Pain Another Day; Misery Go Away – photo illustrated « VARIEGATED VISION
Thank you for this blog!
I am 44 years old and was diagnosed 15yrs ago with Fibro, I remember asking the Dr. when it would go away and he just looked at me like I had asked him if he was the pope!! When he said the words NEVER I couldn’t comprehend what he was saying. I was only 29 I couldn’t imagine feeling this way for possibly 40 or 50 years!!!! I left his office in tears.
I had been in a private plane emergency landing 20yrs ago where our landing gear was stuck except for the nose gear which made the landing much more dangerous. We had to fly in circles for hours to burn most of our fuel and I kept thinking this might be it, the end of my life may come when we attempt to land.Thankfully we landed safely the plane had $80,000 damage. Two weeks later I developed a red very painful rash which was diagnosed as shingles, I was only 24 yrs old. This typically is an old persons affliction. It was very painful, I had blisters all over my back and it hurt to move. After a month I tried to go out to lunch but could not sit in chair it was too painful, I was on pain killers.
About a year later my fibro symptoms started, so tired all the time, couldn’t even go to the mall with my friends without sitting down for breaks. My legs ached all the time. Drs told me I was depressed but I was a newlywed and was happy not depressed just in pain. It took 5 years for a diagnosis. I also have degenerative disc disease, bursitis in my hip, arthritis and emphysema ( I’ve never smoked ) oh yeah and don’t forget the migraines.
I have been experiencing the worst bout since my diagnosis. My father died last year and I’m an only child so I spent two months at hospital, made arrangements and settled estate. It was a very emotional time. My 15yr old son has been getting into trouble, hanging with the wrong crowd.For the last 3 months I have not left the house except to drive or pickup the kids.Sometimes I went weeks without taking a shower, the longer I don’t clean the house the more I want to hide in my bedroom it’s so overwhelming. I actually hate disorder and mess, the kids help very little. I am divorced so I’m alone to keep house in order in & out. I have a hard time getting things done because my mind is so disorganized. My memory is shot, not sure if it’s the fibro or the sleeping pills I take in order to sleep.If I don’t have any I can be awake for days and I take 3-5 a night but still don’t sleep well. I have had bad reactions to all of the anti-depressants, lyrica & seroquel. I get cortisone shots in my back and I’ve had one large dose in my hip. I was taking T3 which helped give me energy but did nothing for the pain. Right now I take Tramadol for pain, imovane for sleep and ativan sporadically when I have a lot of anxiety.
This is the first time I have thought so much about suicide, it’s so tiring to be so tired.!!! My kids eat out almost everyday except when at their dads.The longer I stay in the harder it is to bring myself to go out. I haven’t worn makeup in months, I don’t call my freinds, don’t answer the phone, I feel like I’m being suffocated and weighed down and I can’t get out.I have never taken anything stronger thanT3 for pain and I stopped on my own worried about my liver after7-8 yrs. Its almost impossible to get anything stronger here ( Canada ) there are so many drug users selling illegally Drs are afraid to dispense at all. I would rather take something stronger in a lesser amount than T3 which I took 6-9 a day. It’s so frustrating, when I have had a good painkiller I feel normal and I can do laundry, groceries, clean house etc. I am currently not working, got fired for innocent absenteeism but am grieving and have a very good case. At this point I don’t know if I can work anymore. Im sorry I’ve talked so much but nobody understands my pain and my overwhelming fatigue. I AM NOT LAZY!!!
I am interested in why you were given Topomax, my daughter has epilepsy and it is an anti seizure med. I have hesitated putting her on it since it causes significant memory loss, which combined with seizure memory loss can’t fathom how she’ll make it through grade 12.
I’d like to know if anyone else has gone through this type of thing, maybe I’m having a nervous breakdown??? Maybe my hormones are changing too?? could be starting menopause. My family doc won’t refer me to a psychiatrist. It’s so hard to live like this…….it’s not living!!!! would appreciate any insight and suggestions.
First of all, THANK YOU for sharing your story with me. I have experienced a lot of losses in the last couple years as well. I have lost relatives and one of my closest friends. The overwhelming feelings with life are what all of us go through with the challenges we face with our health. You should know you are not alone. It is difficult for people to understand and each and every time someone asks me, “How are you?”, I have to really think… “do they really want to know?”, “how should I answer this question today?”. I always feel like telling the truth is such a downer. The truth of the matter is, how often can we say “I’m GREAT!” and mean it? Not very. The physical and emotional pain is always lurking and when it’s 24 hours/ 7 days a week it is damn frustrating!
I was prescribed Topomax to alleviate the nerve pain I experience. It definitely worked for the years I was on it – BUT now that I am off I feel like a better person. Better because I don’t feel as foggy, I am definitely in a better mental state than I was. I am just happier off that drug than I was on.
I was on narcotic drugs for the first couple years and I have to say I am glad I am off those as well. With depression, I think those drugs just make it worse for me. I was either always tired or wired because I couldn’t sleep. I also noticed every time I was at the end of my rope… I always wanted to take more, this made me really nervous. When I went into the pain program at the hospital, one of the criteria to join is signing a contract that you don’t take narcotics. This made me realize even more how important it is for me to not rely on them. I totally support people doing whatever it takes to take care of themselves though!
I really can’t emphasize this enough… you need a new DOCTOR! What a complete fail s/he is. Obviously not knowledgeable about FMS, although I don’t even think that’s the issue. This doctor seems just ignorant in general. For your doctor not to acknowledge what you are experiencing right now in life is just unacceptable! You are calling out for help and this person is ignoring what is right in their face. I’m so very sorry that you have to deal with that – it’s just unfair.
I also really recommend you give yoga, tai-chi and meditation a try. These have all made a huge difference in my life. If cost is an issue (like it is for me), try looking for free classes or downloading something from the internet to follow. The other survival tool I use all day is deep breathing.
Just know Leisa, you are not alone. You are not lazy. You are a beautiful, strong person who has made it this far. You can make your life better, one minute at a time. Do not let anyone make you believe otherwise.
Stop by anytime, I know what you are experiencing. My biggest concern is the depression though – I believe if you manage that first as a priority, your pain will also decrease. Your mental health is just as important as your physical health – they are so intertwined. You may also want to look at the drugs you are taking and their side effects. I spent a lot of time doing this to determine the course of action I, and I stress “I”, wanted to take. I was tired of being led by the doctors and ending up feeling like a zombie or just not feeling the way I think I should.
I hope I have helped. I am praying for you!
I actually cried when I read your reply, I felt like someone really knows how I feel and I don’t have to explain. I’m so tired of repeating myself….my standard reply is ” its like working out real hard at the gym and your muscles hurt so much the next day” except I feel that 24/7 365 days a year or ” Imagine your very worst flu and how achy you were ” well that’s me everyday! I am trying to get a new Dr. but because our healthcare is free it makes it harder to find a good one. The rheumatologist who diagnosed me does not treat patients he just does the diagnosis.I have met a yoga instructor and I’m starting that on Monday, I know it will be hard but hopefully beneficial in the long run. I really can’t believe how much support and information is available online, I gave up long ago searching because I never read anything different and there was always no help no cure. Now I’m learning that foods may play a part, breathing etc. I dated a fireman and he called me a shallow breather.lol…..I didn’t have a clue what he meant but I guess I am and not enough oxygen is travelling through my bloodstream.Thank you for the reply, I will update you soon and hopefully I am in a much better place. Hoping you have better pain free days too.
Hi Tamiko…your blog was great and I plan to be a regular reader from now on. I found it on Twitter and it has really opened my eyes. I will come back again later and give you my history, but I had to leave a compliment now!!! Thank you so much for giving the rest of us HOPE. There’s so little of it going around nowadays. Love and Light!
Thank you so much for your very kind words, I really appreciate you taking the time to leave a comment. It feels so good to know that my words are helping people like yourself.
Thank you for this post. It’s amazing how the bloggers i know, well, sometimes we all seem to be on the same page in life. Amazes me!
You are brave and strong for standing up to the urges and feelings and overwhelming emotions.
I used to live gluten-free, but then gave it up. That was before tick bites, CFS and fibro. It’s hard to go gluten-free when I have a eating problem. I am so thin and depression keeps me from eating, so whenever I can eat is a God send. I need treatment for depression, but the SSRI’s always gave me so many side-effects that never went away. Still, lately, I’m thinking I may have to take one, even if it makes me sick. Sort of an oxymoron isn’t it?
Cymbalta made me vomit. I tried it two or three times. Same reaction. It was horrible. Followed by 24 hours of the worst nausea I ever experienced. Never again would I take that!
Again, thank you for sharing honestly. You were right on to do it.
I hope Tammy feels better soon. It’s so sad to hear when you guys are thinking these thoughts because I know all too well, esp., lately, how it feels.
Today I read things online to think about before you do that, so I am at a low ebb, for sure.
In my honest opinion, I think suicide would be a tragic accident. I hope we all can continue to fight, as hard as it is.
Good luck to you Tamiko. I hope you will share with us along your way over the next little while about how your new treatment is going.
Peace and Healing Wishes.
It is SO great to hear from you. Thank you for reading my blog, I appreciate your comments. You know how much I love your writing!
I had to try a lot of anti-depressants when I was just dealing with depression, before the Fibromyalgia diagnosis. I hated it, but we have to persevere. Our mental health, as you know well, is just as important as our physical health.
I was losing a lot of weight before I decided to go gluten-free. I can stand to lose the weight, I need to get to a healthy weight. I am feeling a little better… I had one dr. tell me to try sugar-free and one tell me to try gluten-free. So I will go for this and see how it goes.
Hugz to you!
Thank you so much. I completely relate to this article. I am also a very private person. I find it hard to talk to even my husband.
Hi Elysia –
I hope you open up to your husband or a good friend. It will certainly lighten the burden you are carrying. I can also tell you, writing this blog helps tremendously. I always feel closure once I have written after going through a challenge. When folks like yourself comment, I know I am not alone.
You are not alone either!
Hugz and a prayer that you are on your way to feeling good.
Thank you for sharing this. I’m fighting depression. I dunno how long I’ve been depressed, but with all thats happened to me and all my chronic illnesses…fibro, adhesions, border lupus, neuromas, ventral hernia, slow gut syndrome, intestinal obstructions, Interstitial Cystits, Degenerative Disk Disease, bulging disks, osteoarthritis in spine and both hips, broken left foot bones that wont heal…Im just a mess and take a plethora of pain meds that are prolly killing my liver. I’m going on 44 and feel 94. Im in bed more thatn I’m not. So, yep…depression settled in somewhere…Just the past couple of days where Im feeling like admitting it. Hoping I can find someone to talk to that my crappy health insurance will pay for, but doubtful so I dunno what I will do…but I must stop this constant loop in my mind of ways to end this constant suffering. I have it all planned out, but of course I don’t want to die…I want to live for my family…but I feel Im just a burden now…can I live another 30 years in this broken body? Wow. I’m thinking doubtful….scares the beejeebies outta me. But I always appreciate when people are open about what theyre feeling. it helps to know youre not alone and others have the same thoughts and felings.
Hi Tammy – You are definitely not alone. It is a constant challenge to keep positive when everything in your life seems overshadowed by the illnesses. I have really found help in doing all the research myself and going to the doctors with a solution makes a big difference. Taking control of what I want to do puts me in a position of finding out from the doctors what they know best – interactions of the drugs and how to apply what I want to do.
Reading blogs and the support network through Twitter also help me to know I am not alone in this fight.
You and I are the same age (okay I lie, I’m already 44 :). I agree it makes me feel older, but we have to remember — age is just a number. We can and should make ourselves feel the age we want to be.
Finding someone to talk to is not easy, Kaiser actually has a Psychologist who specializes in pain patients. I haven’t seen her yet, but i am scheduled with her. I am really hoping she helps. I was seeing someone previously who was AWESOME. You should make that one of your first questions. Also try yelp to see if there are any recommendations.
Bottom line – DON’T GIVE UP! Do the research to see if other meds might make you feel better. I reduced my meds in this process and that also makes me feel better – to know I am putting less drugs in my system.
Good luck! Thank you for stopping by and see you on Twitter! You are special, remember that always.
Sending you a pain free prayer and hug!