Hi I was diagnosed fibromyalgia about a year ago, I have seen every specialty going and finally had a telephone conversation with ruematologist .they started me on pregablin but the last 4 to 5 months I have been in so much pain in my arms hands I don’t know what to do anymore. I’m a nurse and have worked in intensive care through 1st and 2nd covid waves so I think that hasn’t helped neither. I’m seeing chronic pain team for the 1st time next week so not sure what that will intail. I just don’t know how to ease a bit of pain as I’m going to work every day hurting. I’ve been reading so much on this group and it’s actually a comfort there are others in exactly same position and I’m not thinking I’m going crazy with the way my body is. It’s taken over every aspect of my life at the moment.
Welcome Frazzle2021! I was a nurse for over 20 years. We have a lot of nurses and former nurses on this site. On July 4th, 2018, I woke up in horrendous head to toe pain. For me, that was the end of my nursing career. Everyone experiences fibromyalgia pain and other fibromyalgia symptoms differently. The most important thing is to not compare yourself with others. Just because my fibromyalgia involves my entire body does not minimize that your pain is in your arms and hands. Have you tried other medications for your fibromyalgia? Stress can increase your fibromyalgia symptoms. Working in ICU is stressful and then addIng COVID to the mixture must be …I don’t even have words to say what it must be like. . Thank you for all your hard work. You deserve a very long paid vacation. Have you thought about working as a nurse in a different capacity? A job where you are sitting and isn’t so stressful? In the US, you can take a leave of absence for up to 3 months, if you work full time and have short term disability benefits. Do you have that option? Having fibromyalgia is a journey. Many of us have tried different medications and therapies to help our pain. Some non medical things that have helped me are, taking a bath using epsom salt, using a electric throw blanket, using a larger heating pad and wrapping it around my feet or hands, therapeutic mittens that have, I think rice in them. You put them in the microwave to heat them up. I also have slippers like this too. Two Old Goats lotion, which I bought on Amazon, helps me. I bought the mittens and slippers on Amazon too. One of the BIGGEST things I have to do is to pace myself and not overdo it. If I don’t listen to my body and incorporate rest in my day, I pay a huge price the next day. We are a family here on this site. We are here for each other and we’re here for you too. If you need to vent, we are here to listen and care. If you have questions, ask us. When I was first diagnosed, I didn’t really use Ben’s Friends that much. But now, I can honestly say, this is my family. I try to stay up to date with the people on this site. I’m not always able to do this. My pain limits my activity here. Frazzle2021, you are not alone. Thank you for reaching out to us.
Thank you so much. I’m currently in an out patients setting now so lots of sitting down and my times of working adjusted to help me. They have only tried me on pregablin but the pain unmanageable last few months. I tried yoga but hurts to much getting on floor at moment. I do try swimming when I can and hundreds of stuff from Holland and barrett. I never imagined there are people suffering as much, I honestly have felt like I’m going crazy and people think your just moaning all the time,. Thank you for your warm and welcoming reply it good to finally know I’m not on my own.
Hi there Frazzle, great that you’ve found your way here!
Sounds good and understanding or even knowledgeable that they are being considerate at work, but I can well imagine how tough it has become now.
I spose you’re asking yourself already is if that is enough. I’ve had to decrease to 10h/wk, after 10 months of sick leave, but others manage 20-30h/wk or even full. Could you consider sick leave to try to get a handle on the pain so it doesn’t worsen?
Pregabalin is fairly often tried for FM. Do you tolerate the sfx? Others & H&B might help better. What supps are you trying?
Yoga may depend on the sort, and more than that how long you do it. In my case 20’’ per exercise, and 8-10’ altogether, maybe several times a day, better moving (Hatha), or meditative (Nidra) than still (Yin). Is there a length which’d be tolerable for you? (Starting with 1’…)
Every specialty going is what I did too, even after the diagnosis, 25 types, just to make sure, and it did make sure, but doc’s didn’t help, rather physio & supps.
How good chronic pain teams in the UK are experienced seems to depend very much on how caring and FM-knowledgeable the people doing it are, from a lot I’ve read. They may/should try to educate about pain and how it can be influenced by your mindset and lifestyle as basics. Whether they can help you with this and to find good physio or suitable meds depends.
I hope the best, I’ve read some great stories about chronic pain teams. And in any case it’s best to go there with a positive mindset, you could then take with you what you feel helps you now or may help you later, and use it as a springboard for further ideas and further people (docs, physios, fibromites) to consult, ask whatever you can whenever you can, but try not to believe anyone until you’ve checked it for yourself. In my experience here in Germany, but from what I’ve heard UK’s the same, most physios have no idea what they are talking about, even those who say they have fibro not nec. much, some can help all the same tho. If anyone says it IS oversensitivity to pain or it IS autoimmune and therefore you need to do this and this, that means they have heard a bit about it, but are generalizing. That’s harmless tho, until they start saying you need to do fairly tough exercises altho you know it will probably take you a week to recover. That’s where it’s good to take over and say no, or try it once and then tell them the next time what it entailed… That’s how I started physio, outpatient and clinic, until I’d learnt to pace it better.
Yes it’s hard, esp. at first, not to think we’re going crazy. CoV helped me in that - the whole world’s gone wonky too. Unless you’re one of the lucky ones who doesn’t have it that bad and can find something that helps quite quickly it does seem to take over our life. I try to think of it as my new life, discovery of slow self-caring living, enjoying short seconds or minutes as much as I can. Careful symptom pinpointing and tracking plus gentle physio (osteopathy, acupressure) has helped me get pains down pretty much and pacing (e.g. 2x2h of activities per day) helps me keep The Ache moderate, supps (amino acids) are now helping stiffness, sleep and more. I still enjoy my life to the full, praps more than ever, and I don’t let the Ache, tiredness and setbacks get me down. I and you have given so much at work, and I bet everywhere, it’s time to lean back, take, slow down, relax, put off the pressure … and then we may well be able to focus on the important things in life…
Me too! It is hard for me to type, but I am so grateful for all of you. My prayers to all!
Hi Frazzle2021, Welcome to the group. I was a BSN (retired) I was diagnosis in 1994. I have learned to live my life in pieces. And actually enjoy many activities. I experience chronic pain all over, some areas more than others. Even the weather change will cause me to ache. But I have adjusted to my life in pieces. Take frequent rest periods when I’m active - sewing, playing the piano, housework, gardening, laundry. I had 8 kids so I felt I could not just stop.
I had to change my nursing areas, part time, and time off.
You will get a rythym for your life. just hang in there. .
Hello , welcome to the most wonderful insightful and safe place to turn when you need answers, help and reassurance. I love this group as I can see a part of my journey and life mirrored here . It is true there’s no cure for fibromyalgia but the tips , compassion and education you get from this group is so valuable. I am 49 , after 20 years as a ophthalmic technician I was forced to file for disability. I was fortunate enough to get a fully favorable outcome. There’s been many times I did not think I could continue to face pain every day or value the way my life is now . I’ve been uplifted and often humbled by the out poor of compassion and understanding from everyone here . This site is a safe haven to be who you are say what you feel and not be afraid of skepticism or dismissing attitudes of others who don’t understand this complicated disease. For my pain I really like CBD / THC products they work well I use both oral and topical and combustible . I’m also on cyclobenzaprine. Good luck with your pain assessment.
I feel the same. It helps so much to know you are not alone and that some of the most unusual symptoms are not just in your head.
Welcome Frazzle. I’m new too. Fibromyalgia definitely gets worse for me during busy, stressful times, weather changes, times with less sleep, or even certain activities like bike riding. I will say that once I started recognizing certain triggers, like bike riding, and either gave them up or found a different way to do that thing, it made the pain more bearable and reduced flair ups. For you, working in the ER or more high stress areas of the hospital with irregular shifts likely exacerbates your pain. I’m glad you were able to move to the out patient clinic area as that probably reduces some of your stress at least and hopefully regulates your work hours more. Just know that fibromyalgia flair ups don’t last forever, and no matter how bad you feel today, you hopefully will have better days and your worst days aren’t hopefully your new normal. There is nothing like a flair up to make you appreciate those normal pain days more.