Hey everyone. Haven’t posted in a bit but I’m just exasperated and beginning to feel hopeless. I’m 49 and have been dealing with fibro for just 3 1/2 years. I am recently divorced and work full-time as a nurse in a physicians’ practice. My pain is just gettining worse. I thought that after winter passed the warmer weather would help. But nope! As I’m typing this, my back muscles on the left side are clenching and it’s excruciating (not to mention my neck and arms are burning) Can’t take a muscle relaxer at work… Speaking of meds, I have paradoxical reactions to Cymbalta, savella, etc. so I can only tolerate gabapentin and tramadol. Getting through the workday is just miserable. I also can’t even apply for disability because I am single and HAVE to work. Even if I did get disability, I couldn’t live on the small paycheck. On top of it all, I have other stressful/ emotional things going on in my life that just contribute to the pain. Oh yeah…throw in insomnia as well. At my wits end and I have no idea what I’m going to do. Thanks for reading
Hi Shortstack, I sympathize with you and feel your pain. It’s very tough to go it alone, relationships are difficult with fm. I never had any luck with pain meds, took all that was offered and I still hurt. I get down too way down “Okay Lord I’m ready” I think we’ve all said it or thought it once or twice. I always retract my statement and ask the good Lord to forgive my moment of weakness. I mostly stay positive and exercise the worst pains away, but there are days like today that I’ve been stuck in bed feeling scared,sad, anxious and all alone. So shortstack I understand how you feel as well as the rest of us here do.
It’s been a pleasure talking to you, but I have to go find the the keys I am holding
Hi Shortstack. I can understand your frustrations. I felt like I was losing my mind last year. I was working, and thinking, I would just die on my feet. That’s how bad I felt. But I had to keep working to pay my bills. Maybe you could find a an apartment where the rent is determined by your income. I hope things work out for you.
Hi. I read your post and almost came to tears because I’ve been there before. I don’t have answers for all the real life issues that may trigger more pain, but I suffered from the excruciating clinching back pain and I found acupuncture works wonders. Idk if you’ve tried it before but it’s the only thing that’s given me lasting improvement. I also found that medical marijuana gives a good day or two of relief. But nothing like acupuncture. Try to find a practioner that uses the stimulator machine on the needles. It may sound crazy, and I can’t explain how it works, but the machine makes each session way more effective. Please try it, you’ll be glad you did. I wish you the best. I know it can be super discouraging, but after many years of pain I feel like I’m finally getting slightly ahead of it. I finally feel hopeful. And if I’ve made progress and become hopeful you can too. Please try acupuncture as soon as you can, it’ll definitely help.
Hi Richard, thank you so much for your reply. I have definitely had many “Ok Lord I’m ready” moments. Thankfully my ex and I are friends and he understands pain as he has chronic pain from a broken neck from a car accident years ago. So he’s the only person around me that I can even talk to about fm. Honestly at this point I’ve pretty much written off a new relationship because who is going to understand all the crazy ever-changing fibro symptoms. But who knows, maybe God will drop someone in my path! (Trust me, He would literally have to do that because I’m not looking lol.) At any rate all any of us can do is hang in there and enjoy the “good” days when they come along and try to navigate the bad ones as best we can. I’m sorry to hear that you are stuck in bed today. I hope you are feeling better to be able to enjoy the holiday weekend. Oh and I’m guessing that you did indeed find the keys you were holding? Thank you again for reaching out to me. Sending you a gentle hug to let you know you’re not alone.
Michele
Hello and thank you for your response. Yes it’s a daily struggle and some days far more difficult than others. I do have an apartment with a wonderful landlord and I pay a lot less than what he could really ask for and I’m so grateful for that. I don’t have credit cards or debt (well except for a hospital bill) so I’m not really worried about finances as is. It’s just I constantly worry about the “what if.” What happens if the pain gets so bad that I can’t work or lose my job? Many people who are on disability have a spouse with income as well. Anyway I was just blowing off some steam and throwing my concerns out there. I guess I will figure it all out when/if the time comes. Thank you again for replying and have a wonderful weekend!
Hey thank you for your reply. I have considered acupuncture and really want to try it. I also would like to do float therapy. I think it would be nice and relaxing. I do have CBD oil that I use, but I can’t really tell if it helps or not. Can’t really do medical marijuana though. I’m encouraged that the acupuncture works for you so I really need to look into that. Have a great weekend!
It’s always good to hear that all break ups aren’t full of spite and hatred. I’m sorry to hear about his accident. I’m happy that you have someone to talk to, and understands your plight.
Right now I’m in a fog and nothing is making much sense to me. I should be clear by tomorrow. I didint understand why you are unable to take some of the basic pain releavers.
The end of this weekend marks a year since I’ve been on a date and its been over 2 years since the end of an 11 year relationship. My condition had a lot to do with it.
I’m laying down and I hate to cause this is the worst part of my day.
I want you to know how happy it was to hear from someone who I can relate to and who knows what I’m going through first hand.
Thank you so very much cause it gets kinda lonely when you get separated from rest.
Have a wonderful day
Richard
I’m sorry for what you’re going through. You might want to try something to help you sleep. I use otc diphenhydramine, a light weight sleep aid. There are muscle relaxants that don’t make you sleepy. Have you tried lyrica for the pain, I’m on 300mg.
And you may want to see a pain specialist and try morphine. I’ve taken it for 18 years, I couldn’t tolerate the pain otherwise. I can function while taking it.
And was able to decrease the dose by 15 mg a week with no withdrawal when I went from 100 to 300 mg lyrica. Good luck!
I am on clonazepam and it will definitely help with the anxiety and sleep. Sorry to hear everything you are going through shortstack. It is definitely easier if you can find someone supportive which is harder to do as most of us know(even with spouses). Hang in there. This group has really helped me. Even just reading the posts. I usually do not post too much, but understanding I’m not alone and what I feel is not in my head helps.
Hello and thank you for your reply. I have tried Lyrica a while back, but I think the dose was too small because I had withdrawal symptoms coming off gabapentin. Was considering trying again, but the cost of my meds just keeps going up and I can’t tell you how much money I have spent on meds that I can’t take. I swear I have my own pharmacy at home! Lol. Anyway I do take an ativan at bedtime and that seems to help. Oh and I did see a pain specialist and I have had trigger point injections (which didnt’ work for me…of course), but before anything else can be done my insurance wants me to do physical therapy. Right. Anyway I’ll just keep plugging along. Thank you for the suggestions!
Hey Richard, so sorry to hear you’re having a rough time. Hope you got to at least do a little bit of something over the holiday weekend. I, myself was lazy and recovering from the workweek. Although I did manage to go see Deadpool yesterday. I should have gone to the war memorial here but just didn’t think about it because I’ve never been.
Anyway, with regards to the medications I mentioned that I can’t tolerate, what I mean is things like Cymbalta, Savella, Effexor, etc. all make me feel like I want to jump out of my own skin. Like I have to keep moving ie wiggle my foot or swing my leg or something. It’s miserable. That’s why I can only take gabapentin. I am going to try Zoloft but I’m thinking it’s just going to do the same thing.
Keep your chin up. Or at least just hang in there as much as you can.
- Michele
I am med sensitive, so i can take limited things…because of this i had to find other ways to help myself …
Some supplements help…like magneseum malate, differnt types of a good quality tumeric also help… right now i am on curamin…
I cannot get through my work without topical pain relievers, i like pain erase and soothenol x2
I have had fibro since i was a child , a genetic form
Heat helps, and i have collected many fibro tools over the years…right now i am on my acupressure pad…because it is calming and lessens pain and also helps you sleep…
It is trial and error for what helps and what does not for each of us…but over time, you can find the things that help the day be better…
I weeded and mulched some today , so i am thinking tomorrow maybe not my best lol
Also stretching is so important for our muscles…
Clenched muscles in the back…triggr point therapy…take a small stress ball and just lay on it, on the bed …this simple trick might take that clench out…i have learned to work the trigger points out on my own when it used to take me a few weeks to get into therapy…
Hi! Thank you for your suggestions. I definitely use a heating pad and take epsom salt baths which really help (for about 15 minutes lol). Thankfully the back clenching finally subsided. Whew. Will check out the trigger point therapy. Thanks again!
Hey Michele I hope this note finds you trying to sell your fibro online. Not sure how you will be able to market it.
I’m glad to hear you had a lil Me time this past weekend.
My fog turned out to be high blood sugar.
I want so much to write more but I’m the boss and my crew is here.
I wish you the best today and thank you for your support
Hi shortstack, Im sorry you are going through all of this, I’ve been diagnosed since I was 21 and it’s 7 years later and my doctor has come to the conclusion that I have severe fibromyalgia. I’m not able to work. I had to quit my job. Working long hours actually makes it harder on your symptoms, especially lack of sleep. I learnt that the hard way. I did work as a nurse assistant for a short period of time and realized that wasn’t the job for someone with my condition. I would miss days of work often. Working part time helped a bit until I started going back to skol. So working part time and school full time was the worst experience ever. I eventually had no choice but to quit my part time job to finish school. I applied for disability but didn’t get it but I was able to get supplemental income. I think the only reason why I was approved is because I had a back problem as well. I had bulging herniated discs in my lower back pinching on nerves in my leg and my depression at the time was really bad. I am allergic to cymbalta and savella gave me extreme night sweats. I do currently take gabapentin, but over the years I’ve tried every medication known to help fibromyalgia and it hasn’t been much use. The thing about these medications is that they can only help us so much eventually our body gets use to it. I would recommend trying to work part time hours so it could atleast help your body relax a bit more and help you catch up on some sleep. Also, ask your doctor about amitriptyline. I use 10mg at night before bed to help me with my insomnia and it doesn’t make me drowsy the next morning (but then again everyone’s body is different and can have a different reaction). Im not sure if working part time is even a option for you, but I strongly recommend sleep.Sleep is really key in recovering from pain, so the more sleep you get the better it is for you. So try your best to get some sleep. I’ve learnt that I need atleast 10 hours or more to recover because our body isn’t like everybody elses and 8hours seems to little. Also, maybe try changing your diet as well. Cutting out fast foods and junk and eating more healthy has really helped a bit. I could see the difference. I hope this helps. I wish u the best and i hope it all works out. If you have any questions feel free to ask
Hi Donna!
Thank you so much for your reply. I’ve pretty much tried every med for fibro that’s out there. As far as sleep goes, I’ve tried trazodone and amitriptyline, melatonin, benadryl, ambien, etc. Melatonin and benadryl make me so groggy the next day it’s not worth it. Can’t take trazodone or ambien due to severe nightmares and headaches and believe it or not the amitriptyline kept me awake all night. I had taken it before when I was younger (before fibro) and it worked great. So like I said, I have paridoxical reactions to many meds. I hate it. I believe something “switched” in my brain when the fibro kicked in and now I have different reactions to meds than I did previously. So right now I just take gabapentin, tramadol for pain and ativan at bedtime and just do my best to get through the day.
I would love to be able to work part-time but there’s just no way. I couldn’t afford it financially as I’m single again. I can barely make it to work some days and I wouldn’t get disability if I applied either. So I’m stuck…hence the fear and frustration, which of course creates more anxiety. Grrr. Really hoping that some new breakthrough will come along that will rid us of this terrible condition. Once again thank you so much for your reply and advice. It’s much appreciated!
Fibromyalgia is such a frustrating disease … you can hurt one place one day and another the next. For me personally I found the less medication I was on the better I felt. Had so many reactions to the so called “fibro” meds out there. I was diagnosed when I was 31 and am now 54- over these past 23 years years I have definitely had my ups and downs. Currently I am on a low dose of Prozac and take zanax when I am really in a flare and ibuprophen 800 for the pain. I try to eat healthy, excercise (currently going to beginner yoga) , drink lots of water and take vitamin supplements. Right now I am having a flare up in my left shoulder and left hip - may try acupuncture since several have suggested that it helps. As far as sleep goes, when I go through a bout of insomnia there are several hypnotic /relaxing audio on youtube and also you can google free sleep audio sounds/music - Don’t know if you have a smart tv but if you do I just go on youtube and search for hypnosis for sleep or sleep meditation and it plays all night and I guess works for me because I usually only have the insomnia for a couple of nights. Just some suggestions. Sending positive vibes your way
I feel for you honey. I was diagnosed in 1994 and have suffered terribly. I also have Severe Fibro and “Polymyalgia” which was a new name my Rheumatoid Dr. is calling my condition. Most people DO NOT UNDERSTAND what we go through because we sound like Hypochondriacs with the way our pains can change from one day to another. Plus people who have Fibro and DON’T have it the way some of us have it in such disabling ways, think that we are babies! Plus, I fix my hair when I am out and wear make-up soooo people think “Wow, you look great!” but again it is the MASK of we true Fibro patients wear in public! II too, go through terrible depressive days where I ask GOD what I did wrong…I Don’t care to live like this but could never give up because that is the SELFISH way out. I am on opiod meds for over 15 years which is 100 mcg fentenyal patch with 30 mg oxy for break-thru pain. I have been on the same dose for all of these years and most days need one oxy when I am allowed 4/day. If I am n addict, oh well, it is the ONLY way I can be somewhat normal. I Don’t understand why people take drugs because I Don’t feel woozy at all. I Just have little or no pain and according to my Dr., i DONT feel HIGH because I NEED THESE MEDS. I have tried EVERY kind of med you can think of in all these years and this is my only saving grace. I truly wish you can hit on the right thing to help you with your pain. I am still VERY DEPRESSED but this seems to go along with us all with fibro. When I have a good day, I try to hurry up and clean or go shopping or have company and cook…then i am DOWN for a few days. Anyway, my point is that this is our LIFE of pain. We can either be a lump of despair feeling “poor me” or just buck up and try to put a smile on our face instead of the grimace of pain face. Yes, it stinks but we can’t give up! Make an effort to LOVE everyone and it WILL make you feel a little better. Hope you can hit on something that can work for you. NOBODY understands what it is like but other Fibro brothers and sisters. Take care Everyone…one day at a time… xxx debbieC
I tried acupuncture and some other treatments there(massage tool, blood letting, injections with the needles, etc). Nothing worked for me for more than a couple days. The money adds up quick too. I just couldn’t afford it anymore for the little relief I was getting. You’ll know quick if it’s working and if it’s not save your money but it’s worth a try. Everyone reacts differently. Good luck.
Unfortunately for me I haven’t found anything for the pain yet and its hard to keep a job. Hopefully pain management can help. The depression that comes along with this is also dehibilitating at times. I was diagnosed 5 years ago but have had the symptoms for at least 15 years. Everyone always told me it was in my head so I pushed through and it just got worse. I’m sure like the rest of everyone here I just want to not hurt anymore, even if it’s just for one day.