Hey jesswoo I have been dealing with this pain for about 3 years and it seem to be getting worse and I dont see any relief in sight pain pills work for a little while but not to ling have you gotten a name for yours yet
Hello Vicky, 3 years seams like an eternity when you are hurting. I have had my pain for 16 years. The diagnosis is fibromyalgia, foot issues, and sleep apnea. There are good days and bad. Lately things have been a little rocky but the more the professionals learn the better I am treated and the more effective those treatments are. You can get through this. That is what I tell my self everyday.
Yes Vicky, you are definitely not alone. Probably most if not all of us can relate to all of your feelings. With these 'invincible' diagnosises it is really hard to handle the isolation. When one looks fairly normal, it is difficult for others to understand or believe any of what one goes thru. It's really horrible. Out of all the doctors I have seen in the last 5 years, I think my pain specialist is the one who has been able to help me the most and my quality of life has improved a fair amount because of this. I still have pain just about every day and keep getting new and odd symptoms and I still get frustrated, mad, depressed etc... regularly but yo a much lesser degree. Also, finding support from forums like this is really great! Hang in there and let us help you.
Hi Vicky, You are definitely NOT alone in your dilemma. I have also got fibromyalgia, degenerative disc disease, degenerative joint disease, thoracic Spondalytic myelopathy, long thoracic nerve palsy, scoliosis, spinal Spondylosis, RSD, etc.... I've been dealing with pain 24/7/365 for the last 23 years (pain began steady in 1992). I've had surgery, physical therapy, biofeedback, deep tissue massage, Neurostimulator implant(s), I am currently checking into naturopathic Medicine. I'm careful of things I eat, no gluten, lots of "super foods", lots of dark greens, watercress, escarole, sage, basil, thyme, berries (dark), seeds (flax, sesame), also nuts like almonds, walnuts, pine nuts and all kinds of legumes, (Navy beans, chick peas, black eyed peas, red beans, black beans). All of these foods not only have fiber, protein and help with preventing the absorption of sugars and fats but also help with inflammation. I hope that you are proactive in your own care and read everything you can on natural remedies, as well as conventional medical practices. There are MANY of us here for you to ask questions to, vent with and just have support on really bad days. I wish the best for you and hope your suffering is relieved soon. Just remember, doctors are people, nobody knows your body like YOU do and if you are uncomfortable with a doctor for ANY reason, find yourself another one. Good luck!!!
Vicky, I'm sorry you are in the early years of fibromyalgia, which for me were the worst. Like many, I have multiple issues that play off each other; DDD, osteoarthritis, osteopenia, fibromyalgia, pelvic floor congestion & dysfunction, IBS, TMJ, dementia & motor skill deficits, and the list how's on... Starting in neck - back injuries with surgery in 1992; 23 years & 17+ surgeries later, and facing more possible surgery. My best treatments were epidural steroid nerve blocks, TENS unit, voltaren gel. You are your best advocate. Through trial & error of trying different things, including exercises and dietary changes, you will learn what works best for you. No two of us are exactly alike. But you are not alone by any means. Saying a prayer for you.
Vicky, I understand how you feel. I feel alone in my own home and I have a wife and two kids. They are willing to do things for me but they don't understand and I don't think they want to understand. My wife told me a couple of weeks ago that she did not me to tell her what was bothering me physically. My kids think I can stop having some of the symptoms that I am having so I can make their lives easier. All the while, I have a beautiful family. I am so thankful that they don't know what it feels like to be me and experience the pain that I do. But I would like them to have some empathy. I would like them to imagine what it is like to be me. The only way they can do that is if we tell them. We can't shield them. But my family doesn't do that. I do try to imagine what it is like to live with a limited disabled person for the past 16 years. I can really see what they must feel. I understand why they are doing what they are doing but I expect more because I would give more. But I ask myself, would I only do that because I know now what it is like. I use to be a giving person before this. But I don't know. So philosophical sometimes. Sometimes when I am confined to a wheelchair, I wonder would I have jumped in front of that wheel chair to get someplace faster. I think we all wish that everyone, our families, our friends, our neighbors would understand. When I lived in a small town, I was made to feel like the local drug addict when I would go pick up my pain medication. I just wish they all understood. But that would be asking to much because then they would all have to feel the way that we do. I hope you find the understanding that you are looking for. This is a great place to find some. I like it. I don't feel so alone now. Best wishes to you and all the friends out there.
Well today I went to see my pain doctor and he asked me what part of my body hurt the and I really couldn't give him an answer because I HURT everywhere am so stiff he have been a big help in the short time I have been seeing him he read my mri results and told me my neck is getting worse but my back is so bad I had to decide if I want the steroid shot in my neck or back that was a hard choice but I chose my back and he has me taking my pain pills three times a day instead of two I pray I get some relief. Am very glad to have found this app on my phone to be able to talk to all of yall
I hope that the increase in pain medication will give you some relief real soon. It's awful when you have to choose the worse of two bad situations. It is too bad that they don't have two types of medications so that they can do both. I hope it will help give you some relief that will make it easier to deal with the pain.
Profiler I live with my husband and daughter and 6 kids only they children have empathy for my husband doesnt understand or feel my pain so he dont have any empathy for me I love my husband but he make me so upset because I feel asthough if it was him instead of me I would hope I would try to put myself in his shoes sometimes I be jyst wanting to go through all this without anyone trying to judge me and just live my life alone like the way I feel anyway
Yes it is Vicky. Every now & then when my pain flares up I wonder. "Is it gone? Will I need to restart more injections?". So far 2 years and counting, on severe pain blocked. I still get mild-mod pain sometimes... Mild every day. Activities determine if worse.
Hi, to everyone in this community. I have been living with pain for over 25 years. Three years ago diagnosed as having Fibromyalgie. "What a Trip". I am sorry you are in so much pain. What I ve done for myself is got a very small dog, her name is Bobbie, I keep her with me as much as possible. She knows when I have a flare up and makes herself to be "annoying", and to my surprise I am so focused on her that I do get pain relief. I also have to take very causaul small trip walks taking in deep breaths of fresh air. All my routine household jobs I do in very short time frames. I can't have any jobs to big that I get over whelmed. I can work full time and love every minute of my job. During my work day I stand up and stretch every 1/2 hour, if I am getting to over whelmed I stand up and dance in place for a few seconds ( of course slowly). I also, will listen to audio books in my car, at work, and at home. I moved recently and so I am in tremendous pain. So, At and work I am icing the painful areas and using my Tens Unit. Staying away from sugar, dairy, gluten, as well as beans. Increased my vitamin "c", fish oil, and "d". I am still in intense pain but manageable. I am also very Blessed to discovery this forum.
Hi Vicky, I read your post, then was pleased to see people responding. It's strange how we can have our family around us, but still feel so alone. I try not to moan to my family about how much I hurt, because I think what does it achieve, except make them worry. But by not telling them, because I look ok, I think they forget!! So we can't win. I made a consciencous decision when I was diagnosed, that I was not going to keep saying about all my ailments and pain, I remember hearing elderly relatives keep relaying their aches and pains it becomes 'white noise'!! But not sure I've made the right decision! I'm glad your pain doc has given you the injection and it has helped a bit. Get a good nights sleep (hopefully), that always helps too. Remember you are not alone. This forum is a god send! X
Hello daisy girl rather you tell your famaily about your pain are not their still going to have the same feeling about hearing it ever little noise you make when you move says it all and they get tired of hearing that that you cant win and they can tell how you feel by the way you walk you cant hid that either. My husband see and hear it all he just walk out and leave me to all my pain I really dont like that it has gotten so bad that he waits until he see or hear my pain and that gives him in excuse to leave the house doing what ever he do out in the street so all am saying am still alone this group has helped mw alot because I feel there are people out who do care
Twedin I have been living with this pain for about two years it just never had a name to it until 2 weeks ago it was bitter sweet good on one hand and bad on the other I prayed for along time for God to tell them what was wrong with me and it finally happened now the doctors can help me and I thank every day I try to remember am not alone and now I have yall and am so glad
Ah yes, SSDI...😕. I have been on SSDI since 2006. I am 'lucky' as I was born with a rare medical condition that has caused many other grand chronic conditions. I was also lucky that I had somehow managed upon a really good disability advocate. Without them to help me I would have been lost. Trust me when I say this though, once you are on SSDI, they try their right best to get you back off of it.
Both my husband and my stepfather have been trying to get on it for a few years now. My stepfather has mantle cell B cell lymphoma, which is incurable, and they still won't give it to him. Simply because he is in a sort of remission phase. Even though the aggressive chemo he has been on has damaged his nerves irreparably and he can't get a job. It's ridiculous to the point of being almost a joke.
My advice tho: get an advocate. Look them up in the better business bureau once you find one. Stay on top of them and your doctors. Don't give up. Don't. Give. Up. ((Hugs))
I have a new lawyer and I have been fighting for 3 years but one thing I dont understand is how people who have never work get it on thier first try but I have worked all my life up until 2005 I recieved long term disability it ended in 2013 haven't had an income since then and social security is horrible I really dont understand the process you have to be on your d w ath bed to get it and pray fully you wont die befor you get it
Hi Vicky - I'm so sorry you feel alone. I remember the time that I did too & it was a pretty dark place. Figuring out how to deal with all these medical problems, especially when the medical people look at you with either pity or extreme doubt (I personally get pissy when they doubt my pain), is really hard. One of the best things I did was take my social security lawyers advice & sought counseling.
Therapy is really helping me come to terms with the massive changes in my life. I was one of those obnoxious types who power walked everywhere when everyone else was meandering. I'm a "fidgeter" - an adult who fidgets like a little kid. I used to work 40-60 hours a week just because I could. And now I can't even get my house clean. I don't bother to get dressed because I nap so much - it's comfier to nap in jammies. And I was beating myself up over the whole thing. Therapy is teaching me that I need to respect my boundaries & listen to my body. And it's teaching me it's ok. It's ok if I don't have a spotless house. It's ok to take a few days to do something that would have taken a few hours. And it's ok to acknowledge when I'm in too much pain or I'm sick (because now my immune system is compromised).
And, to top it off, you came to the right place to gripe. I am learning that people here know what I'm going through & some of them are actually worse off than I am. I still may not get what a "spoonie" is but I get that the people here understand my pain.
My suggestion is too keep posting & reading & replying. People here have "got your back".
Know how you feel sweetie ! I have Jhm and eds and ospteoporosis I'am a mess in pain all the time ,I do have family of sorts husband who prefers his computer and his work and a 14 year old daughter , and I'am a lone most of the time , the old man thinks that a hour with me is ok most of the day upstairs on his funking job ! 7 days a week 365 days a bloody years ,or out 3 days a week or more ( he don't get paid ) and me down do and thinking shit ,
Flappy my shot was yesterday and it hurted but I still have alot of pain and I cant clean one room and one day anymore I start hurting real bad and start getting spasms I cant even stand up long to cook a foul meal and on top of all that I forget alot I will cook and gorget am cooking my family dont want me to live alone anymore I feel handicap my husband think am suppose be super women when I cant even stand up more then 12 minutes I HATE THIS
Vicki, I had a lumbar epidural on Wednesay. I felt really good on Thursday. On Friday some of the pain came back and today is pretty bad (but I also had a sleep study yesterday so the exhaustion is making the pain worse). Let's hope that once the soreness wears off, we'll both feel much better!!!
Vicky I'm also unable to cook a full meal anymore. I've altered how I cook by pulling a stool to the counter or stove, but even then I can only do any one thing 10-15 minutes before I have to stop and rest (on a soft chair).
My husband had to place his mom in a personal care home, and brought her 2 sewing machines here until he can sell them. He asked (again, for the third time) if I wanted one, since I loved to sew. I looked at him and said, "I would love to keep one, but I can't. Why can't you understand that the position and time it takes to press, lay out, pin, cut, baste, & sew would kill my back, neck, and hands?!!" He meant well, and I'd love nothing better than to sew for my granddaughters like I did my girls, or cross stitch, but that era in my life is over. I've faced it mentally & physically. Just wish my family could remember.
My life is so limited. I am 43 and so limited. I can only drive the car down the road a mile to the convience store. My kids wonder how come I can't go and drive myself to the grocery store 10 miles away. I can't sit in one place to long. Maybe 20 minutes. I can stand in place In the kitchen no more than ten minutes. I have to lay down on my side most of the time. It is the only way I can take pressure off my spine that has nerves being pressed on when I sit and stand.
I had found out like 3 months ago that I had a torn rotator cuff. They gave me a cortisone shot. It helped me for one day but I was in intense pain thereafter. My pain was a five and it went to an 8 and 9. It was the weekend and I couldn't get a hold of my doctor. I was miserable. It came Monday and I still had the same problem with my doctor. But I had a physical therapy appointment. I called and asked if I should even come in when the shoulder is that inflamed. I was so happy that I went though. He used ultrasound on my shoulder. I couldn't believe how great that thing is. You can buy some units. They aren't really too much. But they only go up to 1 MHz and he was using 3 but he told me it still would make me feel good. If anyone out there wants to try that, look online, they are selling them all over. I think even on amazon. It puts heat in real deep.
But talking abou people understanding, my kids are always asking me to stop humming. It is a side effect of going off one of my medications. So I don't even know I am doing it but they want me to stop and not do it anymore. Then ten minute later when I forget not to him, I start doing it. But I wish they would understand I my illness sometimes. I have spoiled them.for the most part. My son is great. He will take me to the doctor if I need. But my daughter, who I love dearly, will start giving me a schedule of what she has that day. She may have several hours to take me but than if that happens, she will say, this was the day I was going to rest. I have asked nothing from them. My mom was disabled when I was younger. I resented her so much because I had to do everything for her when she could do many things for herself. She just gave up and had me wait on her hand and foot. I vowed if anything would ever happen to me, I would not do that to my children. So maybe once a month, I might ask them to do something health related. They think it is asking a lot but I do ask them on their way home to pick up milk or bread. You would think they would mind since they are over 20 and don't pay much into the house. One of them nothing.
But they don't understand my hardship. I just want them to try to imagine what it would be like. But their are so many parts they can't imagine. Our despair when nothing is working when we are in bad pain. Our fears about the painful procedures and things we have to go through to be in less pain. They can't imagine how alone we feel because we usually can't do things most people can do. So we miss friends.
So I know I went a little off subject there. My mind does that. I am just happy that I am able to develop thoughts today because some days, my my co2 levels in my blood get high and I am like a drunk person saying some wierd stuff that my family will tell me when I come to a day or two later. I think it is just the sleep apnea. But I know what it feels like to tell someone something over and over about yourself over and over and they still don't want to get it. That was like my brother when I told him I was bipolar. He would not accept it. I think some people don't want to accept our limitations.. Maybe it scares them. Maybe it makes them feel like we are dying or something. I don't know the answer to that one but I see it a lot.
Profiler when you have fibromyalgia one of the side effect it forgetting alot and going off bass I have both of those I forget to much we all just need to pray for our family that they will understand what we go through.
Flappy I be so mad at myself because I can no longer do simple things and am only 49 with 9 grand babies the loce to play with me by jump all over me and I try to tell them you cant jump on grandmom their little faces look so sad but they understand I just had my 9th grandchild she is 1 week old and I try to hold her but I cant do it for long because of my hands neck and back am glad I have some bew friends on here even if its just online thank yall for following me please lets st in touch I wll always long on to check my status
I was just sitting here smoking and thinking about my paun and God asking why do some have sever pain and some don't and I remembered the Scripture GOD SAID THAT HE WOULD PUT ON US MORE THEN WE CAN BARE and it could be worse but as long as we are able to write a post thats a big accomplishment. THANKS BE TO GOD THE WE CAN EXPRESS ON THOUGHTS FROM MORNING TO MORNING
Vicky, just yesterday I came across John 21:18, God tells about how our life is when we are young, verses when we are old. It gave me comfort because everyone will wear the use shoes at some point, and then the young & healthy will understand as they have to rely on their children and grandchildren. God bless your day today!
Vicky, I too try to be grateful for people and things even during my worst times. It does help to put things in perspective. I know there are always people worse off than me. I am grateful for my family and the friends that try to understand me and have stuck around me the last few years when my life change drastically. I'm grateful for my husbands support and love. I'm grateful that there are some days I can be somewhat productive. Thank you for posting as I was having a bad day and reading your comments reminded me that I do have things to be grateful for! Hope you all can do the same. 💐💐
Am so glad that my words could be an inspiration to you and yes there are always something to be grateful for and we are all going through similar situations and we are here to support each other when no one else would. We are here to support each other even when you do have supportive people in your life. I love you and Jesus does to
This morning has been a bad morning for me I hurt so bad it hurts to move but am glad that I dobt have to hold how I feel I can come in here and tell yall THANKS BE T O GOD that I have some real support I LOCE YALL AND GOD DOES TO.
Vicky, I am sorry to hear that you are in pain this morning. Mornings are the worse part for me. That and right before going to bed. I really wish I could avoid going to sleep if I can. I really like coming here because I get the support that I need so much. My family doesn't understand and I am sort of glad that they don't in some ways. I like that they don't how much my bad pain feels. And that they have not had to experience as long as I have had it. So I am happy they don't understand that. So it is nice to have people here who understand. I just wish they didn't have to be here. I am sorry that they do understand what it is like. I take no pleasure in their understanding. I am sure you don't either but it is nice to have their support nonetheless. I, too, believe in God. I don't believe he intended the world to be this way. I think that he is going to change things and make people better. I like the scipture at Revelation 21:4 where it says"And he will wipe out every tear from their eyes. and death will be no more, neither will mourning not outcry,not pain be anymore. The former things have passed away." So I look forward to that time. It gives me hope. We all need hope. We can't put our hope in medicine because what is good one day is bad for you the next. A new drug comes out today, to find out that it causes cancer or heart attacks down the line. They just don't know all the answers. And we don't expect them too because they are just men. But they are doing a pretty good job with the resources and the brains that they have. So that is good. I hope you get to feeling better. I am trying to figure out what I am going to do today. I find that with not working, I just don't know what to do. Usually, I am in too much pain to concentrate on something. So I will sit down in front of my computer or tv and watch something. I will probably do that. But maybe I will watch something spiritual and upbuilding today. I hope you get to feeling as best as possible. Take care. My best wishes to you.
Profiler I enjoy when you respone to my messages I took some pain pills and I do fe we l a little better and I wish also that I didn't have to come on here to other people we ho understand and fe rl for me because we all suffer from the same or close to it please keep responding I dont work either for the last 3 years I miss it so much because I was able to provide for my self now I have to depend on family and husband to take care of my needs because I have be r n try to get social security since then and still fighting have a new lawyer so this time I pray that I am successful right now I live with my daughter with 6 kids and I want my ow0n place but dont have an income to pay my own rent. My husband is not rresponsibly he prefer to spend his money on alcohol and weed. I dont know why am sharing this but I just feel the need to.
There are NO judgements here, Vicky. If you need to get something off your shoulders then please, don't feel that nobody will get it. I, too, have really bad mornings ALL the time. The rest of the day fluctuates so I have to deal with it as it comes. Like Profiler, I'm glad my family doesn't have this kind of pain and suffering making them unable to understand what I deal with. I wouldn't wish this kind of pain on my worst enemy. I'm glad that you found us and that it gives you relief to know you're not alone.
Sometimes, we just need someone to talk to. I do understand where you are coming from but not how you feel. I was the person on the other side. I was like your husband until I got help but I am not like that anymore. I discovered and was diagnosed with Bipolar disorder. I knew I had bills to pay and I wanted to pay them. It wasn't that I didn't want to pay for things because after I blew my money, I was in so much stress. But I would get paid really good money. like a few thousand every two weeks. And I would blow it. I would go to Walmart. I was like a kid in a candy store. I would look at everything and would imagine things that I would want But I mostly bought things for other people like my wife and kids. I really liked getting gifts for everyone. But it put our family in so much jeopardy. The rent didn't get paid. The electric was past due. The phone was getting shut off like every other month for a day or too. I would run out of fuel for a couple of hours. So I was I horrible person. father, and husband. I was a bad example to my kids. Like I told you all, I was not a good person for allowing all that to happen while my kids were little. It would never last very long. Several hours the most. But I am sure they felt insecure. So I my wife has told me many times how she felt during those times and i have listened. I felt terrible for making her not feel secure when I had the ability to do that twice over.
Living with six kids and being an older person must be a hard thing. I know with being in pain. I want slower and quiet. Maybe you feel the same way. Six kids would be a tremendous test on my sanity. I really don't think I have the ability to handle that. Plus I don't know if you have found this but I was raised a certain way. I end up raising my kids that way. Just without the abuse that I suffered through.But even though that happened, my parents did give us many good qualities to pass on. So when I went to visit my brother, I found that he was raising his childen very different. It freaked me out. When you add an in-law to the equation, how kids are raised and how they turn out depends on that. So my brother and I were going to pick up a pizza. His daugher wanted to go. She ran and went in the front seat. We were raised with a deep respect to older ones. When you were in the car with someone older than you, you went in the back seat. That was just the way it was. Well my brother just allowed. Did not tell her to go to the back. I was floored. I know that seems petty but that would be very disrespectful with my mom and dad. I raised my kids the same way. His kids turned out great though. People are always bragging about my kids though about how respectful and kind they are. I know they did not get theat from me. I tell them, it is all my wife. She has the good genes. So with that in mind, I can't stand to be around many people's kids especially when their kids have the upper hand. I never allowed my children to embarass me in stores like a lot of them do today. I mainly kept my kids in control when they did something bad or when they asked to do something that was not good. I would ask them, how would god feel about it. Because we teach them about his personality and the things that could hurt him. I don't know how I got on this. I think it is because I feel for you that you have to be around six kids when you don't feel well. I am sure you love them very much. But I would imagine that would still not make it easy. I also could have no idea what I am talking about in yout case. You may love that situation.
I am sorry that you have no income for your rent. Things are so hard today. We live in hard situations. I hope you get the help you get. Have you ever searched out for a social worker. Someone who may know of different programs available out there that could used by you. Sometimes, their are a lot of programs we don't know about that get federal money that they dispense that they know about that is not really advertised but just gone through a social worker. Well, I hope things can get better for you. I am so sorry that life can be this hard. I hope you get to feeling better. As far as I am concerned, you can post anything that worries you or you feel like you want to talk about. Best wishes Vicky
Profiler, we ALL make mistakes in our lives. That doesn't make you a bad person. I get what you're saying about your family and what you did with money, bills, etc... However, unbeknownst to you, you were dealing with an illness. The good that came is you got help and you're on track and that is not happening. You are a very kind and compassionate person and I'm sure no matter what, your wife and children love you. I, too, wish I could work. I loved my job and the people I worked with. It gave me purpose and much needed money as we all know. I go through feeling useless and weak and lazy and any other thing you can think of. I had horses, I rode, I mucked stalls, groomed and it was my passion. When I went to get my disability, it was granted on the spot because I'm in such bad shape. I haven't worked in almost 9 years.
I thank yall for being so compassionate profiler thank for being so kind and I will start to share how I feel because I have so much balled up inside me and I also have bipolar and depression I see a therapist snd a physic doctor but sometime that to ling until my next visit. Living with my daughter and 6 kids is hard I sleep in the livingroom so everyone come through here and everyone wants to sit down here when all I want is to be alone. I never have alone time atless unt they go to bed. My husband is never here he is gone all day and sometimes all night I am trying to get public housing but it is hard because there is a waiting period and I WILL MAKE PHONES CALLS TOMORROW TO SEE IF I CAN TALK TO A SOCIAL WORKER