I'm new to this app but am hoping it will be helpful. I don't have a diagnosis yet but I am sure I have Fibromyalgia. I think I know more about my condition than the Doctors! Just wanted to introduce myself and say hi.
Hi Calevenstar! I'm Delilah(not my real name it's a nickname) I am 24 and I'm in Washington State,USA. I have chronic pain caused by the genetic disorder Neurofibromatosis(NF for short, there are three types Neurofibromatosis type one, Neurofibromatosis type two and schwannomatosis I have type one) my pain is nerve pain but I also have joint pain,muscle pain, pain pain. basically Neurofibromatosis causes benign tumors to grow in the body(on nerves,organs,under the skin, on the spine) I have tumors from head to ankle I have a brain tumor(located in the hypothalamus/thalamus part of my brain) I recently discovered a new tumor that is hard and painful to touch so my mom will be getting a referral for a local neurosurgeon from my hematologist so I can go see the neurosurgeon and talk about removing this and a few other tumors. It's rare but the tumors can become cancerous and I have a higher risk than someone who does not have NF of getting cancer so it's very important important to watch my tumors closely and we do that with a yearly MRI(I'm behind on mine I haven't had one in two and a half years) currently the pain medications I'm on are gabapentin, tramadol, methadone, morphine(only as needed). I do not know what pain medications you take or if you are on any tramadol,methadone and, morphine are strong pain killers gabapentin is not a narcotic or opiate, it's used for seizures but can also be used for pain, gabapentin works quite well for me, I've been on it since 2004 and I highly recommend it, if you do try it I'd like to tell you that you won't know if it's working until it builds up in your system which will take some time and that's a downside but it does work well once it's built up in your system, for severe pain I highly recommend both methadone and tramadol but I'd try tramadol first. Tramadol is strong and powerful I used to take it only when I needed it but sometime in 2007 it became a daily medication. When I took it only when I needed it, it always made me very drowsy which can be a downside but it probably depends on the dose and the person as medications affect everyone differently so while it may make me very drowsy it could make someone else only slightly drowsy but even though it's potent and very strong and could knock out an elephant it's a very good medication for moderate to severe pain. Methadone made me drowsy as well but not until I started taking a higher dose when I was on a low dose I didn't feel drowsy. I don't remember how I felt or how it affected me when I first started it but I know that it's used to help recovering drug addicts and it is also a great medication for pain, I was surprised when I found out that it can be used to help recovering drug addicts but I think it's great that this medication can be used not only to help chronic pain patients but also to help recovering drug addicts. Some medications can be used for more than just what the medication was made for. Anyway sorry for the long post. I hope that you get answers and a diagnosis soon, I also hope that the crummy advice I've put in this post helps you at least a little bit. Have a good day! 👑Delilah
Hi Delilah, Thank you for your reply and advice and support, I really appreciate it. Can I say how brave I think you are, you have so much to cope with so early in life, I am very sorry for what you must be going through. And that you take time to help others is amazing. I wish you good luck with your consultation. I am trying to get a confirmed diagnosis of Fibromyalgia which is proving difficult. My Rheumatologist thinks that I may have Fibro, but some of my symptoms are suggestive of Polymalgia Rheumatica. My ESR and CRP levels were high (inflammation markers) which pointed in that direction, but I knew that it didn't account for all my symptoms whereas Fibro does. There is no diagnostic test for either, but Polymalgia is treated with steroids over a long period of time and so he wanted to put me on them as they work very quickly to alleviate the symptoms of Polymalgia. However, they have a very long list of very unpleasant side effects, one of which is that it can cause mania. As I am Bipolar I can't take the risk of that happening or the devastation it would cause. And I know I have Fibro so steroids wouldn't make any difference. So I will just have to carry on and see if I get a diagnosis one day. But I have come to realise that having a name to put at the top of a list of symptoms doesn't change anything, I still have to live with my condition and the way it affects my life on a daily basis. I take medication for my Bipolar and Tramadol and Pregabalin for pain, although it doesn't help with breakthrough pain or when I have flare-ups. Anyway that's a bit about me, sorry if it's a bit long! I am 52, married with a Daughter 30, a Son 27 and my Granddaughter is 8. I have 2 new kittens who keep me company and are a joy to have. I hope you have a good day/night (not sure what time it is where you are) despite your conditions, and I will keep you in my prayers. Take care, love Calevenstar x
Welcome to our community family Calvenstar! You will find lots of support here, by way of listeners, hugs, & prayers, suggestions for coping, new diagnosis (dx) possibilities (as you read other's stories of symptoms), and even laughter. We are a very diverse group from all over the world and of all ages. And our dx are all varieties too, some with many, some with few, all life-altering. And we all understand chronic pain. I've been in the community several years now, and I've learned of things my doctor's didn't think of, or supplements to take, new coping methods to try. We are all different and not everything works for everyone. I've found my faith and trying to stay positive helps me a lot. But sometimes I feel overwhelmed and need to rant, cry, or just "get it off my chest" as the saying goes. Because we all understand, we are all able to support, and no one is judged (unlike by family, friends, co-workers or the public).
I've had chronic spine pain & migraines since the 90's, requiring surgery twice. I started with fibro symptoms in 2007 but wasn't officially dx until 2012, following major surgery (5 in 1) in 2010. I had to quit work to recuperate, but things didn't go as planned. I ended up with more surgery and many more dx problems. I now use a cane or walker, & use motor carts when available, have hand tremors, dizziness & imbalance, and the list goes on & on. I call it my downhill train health derailment! Lol 😉 Following my fibro dx in 2012, I didn't feel like it fit everything going on with me. I asked my PCP to refer me to a rheumy doc & endocrinologist, but he refused; my psych doc did the referrals. I found out I not only have a damaged thyroid but I'm hypothyroid. And I was dx with Sjogrens by an oral biopsy following a rash inside my cheek that wouldn't go away; it was growing. Others in the community told me it's very common to get others Autoimmune diseases (AI) once you have one. I've been told I likely have Raynaud's also, because my hands change color & temperature easily. After I was started on plaquenil for sjogrens my pain dropped from a 7-8 daily avg to a 3-4. I still get flares with increased pain, which I use tramadol for. I have major pain & psych meds allergies, so I've built up a fairly high tolerance to pain, as a way to keep what few pain meds I can use reserved for surgeries or acute major pain.
At the suggestion of other community members I now do gentle stretches to stay limber, walk a treadmill when I'm able, do light back/abdominal exercises to help my spine issues (strong core = better back), and take supplements like vitamins D3, potassium, magnesium. And due to a generic issue I take L-methylfolate (B9), for MTHFR gene defect. I also destress with relaxing music (prefer instrumental or contemporary Christian), read or play tablet games. I'm 54, married to a very supportive hubby, have 2 grown & gone daughter's, 1 granddaughter, 3 step-gkids, and hopefully 2 more in the near future. And then there is my snuggly-bear dog (looks like a fuzzy bear), a very loving & docile jackapoo we adopted a year after losing out last yorkie. He's my baby & he lives everyone!
As you travel this road of getting dx & treatments, research anything you think might be important. Ask questions, in the community & of your docs. And if something doesn't feel right speak up. Push for further tests or even a second opinion. Sometimes after getting a fibro dx the doctors try to dismiss any & every symptom as it, rather than taking time to investigate. From the time I started complaining that something else was going on, to the time I received the sjogrens & hypothyroidism dx, nearly 2 years had passed. Be your own advocate. And get your family on board as your biggest supporters. I started asking my hubby to go to appts with me when I couldn't remember things, or explain them well enough (dementia/memory loss dx added). That's when he really began to understand how my conditions were affecting my every day life. Hugs & prayers as you find your best coping methods! 🙂💕🙏🌼
@ Delilah, I echo Calvenstar saying you are brave, and a very good help to our community. There are so many younger people fighting chronic health issues, and each & every one of you are an inspiration to me. I don't know if I could have handled my health issues decades ago. 👍 Hugs & prayers you & everyone has been a good day! 🙂💕🙏🌼
Dear Flappyslady81, Just a quick response to say sorry I haven't replied properly to your lovely message but I am in the middle of major flare up so feeling pretty rough. Didn't want you to think I wasn't appreciative of your post. Hope to be able to write properly soon
Thank you, am glad to have found somewhere where people will understand my condition without a big long explanation, and won't make all the usual comments that drive you to distraction. Am currently in middle of a Fibro Flare so just not up to writing much, but hope to be able to soon
Bless you, Why not hun? Did you see some of the posts by other people and think that they have far more problems than you do? I felt like that too, but each of us has to cope with things that affect us on a daily basis and negatively impacts our lives. We all have pain and we all need support from people who will understand and not judge us. So if any of that connects with you, please give us a try. Love and hugs to you xx
Hi welcome to a awesome community!I know what you mean. When I was hospitalized earlier this year, I educated all the doctors about my disorder. I have MCAS, a allergic disorder that makes me allergic to a ton of things, and all my reactions have the potential for anaphylaxis.
Peep43....you belong. I kinda felt the same at but it's been an incredible couple weeks. I just turned 47 and like to think that if 1 person can relate then we're all better off. Welcome! Some of the others in the community are so knowledgeable. Take time to read through the posts and never be afraid to ask or comment. I'm pretty shy usually but have felt very welcome here.
@ Peep43, why would you think you don't belong? Chronic pain has different meanings for everyone. Some have high pain thresholds while others have low ones. Some have multiple chronic pain causes, while others have only 1-2 chronic pain causes. Some have issues that came from injuries, some from surgeries, and some from birth or just part of life. Whatever the reason, chronic pain is still chronic pain, and everyone who suffers belongs here. And pain does not attack us all the same. We all respond to it differently just as we do to the treatments. We are all different, but we all understand chronic pain.
So welcome to our community family, where I am certain you will find support and suggestions on ways to cope with your pain. Start a new post about yourself, where you can share a little, ask questions and just get a chance to meet others like you.
Hugs & prayers as you travel this road with all of us pain warriors!🙂💕🙏🌼
Calevenstar, thank you for your sweet reply! I thank you for calling me brave! I think you are brave too, and courageous and so strong, I pray you get answers soon and I'm sorry your going through so much and I hope things calm down and you get a break from doctor appointments and stuff and you get to have a little vacation. I think we all deserve a vacation/staycation from hospitals and clinics and doctors. I don't know if you have the pain companion application but I recently got it(it's free) as I got an email saying someone wanted to send me a private message but that the message couldn't be delivered until I downloaded the app and stuff so I did that but I never got the private message(probably because I didn't use my username that I have on here) anyway I was able to reach out the the person who tried to message me so we are talking now. If you decide to check out the application and you decide to download it and join that community which I believe is an extension of this community. Feel free to look me up if you'd like, my username is Delilah2520.(without the period of course!) I hope and pray that you have a wonderful day!
Bless you Delilah2520, I have just had a little break away at my Daughter's for a week so have been trying to catch up on everything including rest! My to do list is getting longer, although some of it is stuff I already wrote and had forgotten! Joys of Fibro Fog Brain! I'm feeling better about all the doctor stuff. A bit of time helps to get a better perspective on things. And I have better things to use what little energy I have for. They ain't worth the Spoons!! I got Baptised while I was away, that was the main reason for my trip. It was a wonderful, joyous day. They had made the Baptistry pool even warmer than usual and when I was in it I realised that my lower half was a lot less painful than my top half. It was bliss! And I was thinking, I haven't had a bath for over 3 years, so this is how it feels! I have showers, I'm not ringing! I may have to save up for a bath chair lift. I hope things are going OK with you, or as well as they can do. Look after yourself and I'll try to remember the other app, it sounds interesting. Lots of love to you xx
Welcome Cal 🌷🌷🌷 i think everyone here is special,🌹 🐓 in their fight to overcome such hardship...⚘ but even more fantastic for being here sharing their stories... just remember...🌻🌻🌻 🐪u r never alone🐫we are all here together 🐔
Thank you for your message, and yes, you're right, we're all special people. We're warriors, fighting against illness and pain, sharing our stories and experiences to help others. And knowing that we have somewhere to come to for support and understanding when no one else understands is so important. I am thankful for that. Hope you all have a comfortable night x