All i want is to be normal for a day, i want to not be in pain the second i stand up and sick the second i sit down. i want to know what its like to be able to just get up and not be in pain and know what its like to have fun when im with my friends.
i mean im lucky i have friends who try to understand but who really can? no one has any idea what its like to cry yourself to sleep every night and be in pain the second you wake up.
last night all i wanted was a fun night with my friends so i invited them over for a sleepover half way through the night i was puking non stop and couldnt enjoy myself at all. moving and playing video games made my hand burn even more than they already did before.
what is it like to not be in pain all the time? can you imagine that?!? imagine waking up and being able to sit up and think todays gonna be a good day. i dont remember the last time i thought that way.
i wish i could handle all of this better but i dont think things will ever get better after four years of living like this im really loosing all hope.
also, if there is anyone reading this who has excruciating stomach pain and finger pain what do you take for it? normally these arent my pain fibro pains but this week they have been terrible.
I'm sorry for the pain that you suffer, especially at your young age. It's not fair and there's not a thing I can do or say to make it otherwise. It stinks that you have fibro and the pain associated with it. That being said, we have to accept that there are going to be truly awful days and ride them out as best we can. Then there are the good days and we have to try to enjoy them more and live more during them than a non-fibro person would.
As for finger pain, I get it too, but mine is usually dull, throbbing pain like arthritis. Maybe ibuprofin would help some? I also wonder if water aerobics or PT would help some?
Stomach pain - could it be from medicines you are taking? I know I overdid it with the ibuprofin and got a stomach ulcer. Do you take a lot of NSAIDs? They really can affect your stomach. Also, if you drink Diet Coke, it can also cause a lot of stomach pain. Or else, perhaps it's the fibro.
I wish I could offer you a lot more useful advice than this but I AM listening and caring. I'm sorry for your suffering and wish it wasn't so.
Hi! yes enjoys the less painful days is really important!
I'm actually unable to take ibuprofen for my pain because i have had an ulcer also! i was doing PT for a while but it was too much to handle for me, i would be in even more agony for a week after so it wasnt worth it for me. I was going to try yoga soon though.
i'm not sure what the stomach pain is from i do take lexapro and two other medications which i know can be hard on the stomach but im not sure if its from that because some days its fine and others its horrific. i also dont drink diet because i know it is bad for fibro!
thank you very much! it was helpful. even just knowing someone cares is extremely helpful
I hope someone figures out fibro soon because it’s not fair that so many young people like you have to suffer with it!
For finger pain, Meloxicam works for me. It’s a prescription medication for arthritis. It also helps my poor toes which are really sore now.
I had stomach issues too - I learned I’m gluten intolerant so changing my diet helped. You might want to try a 3-4 day trial gluten diet and see if it helps.
Its not fair for anyone to have to suffer with it no matter their age!
thank you , ill try that! ill ask my doctor about it. my toes are really sore right now too, but my restless leg is bothering me so that could be the reason!
i've tried that diet before but i think i may try again for a longer period because this stomach pain is brutal!!
Looks like Renie has you on track with the Dr, she has worked for a Rheumatologist for years, so she will be your gal in NY for knowing who.
She is right about the list of symptoms, health history, meds currently taking, other health issues, even if they have records, chances are they will want to know it all again.
This is a great site for support, information, and you will bond with people from all over the world who understand exactly how you feel. Believe me, we know how you feel.
It is tough to hear, but be patient, a new Dr has a lot to sort out, sometimes it is a job for them with a limited amount of time, but if you are going to a specialist, they will get you there. It's complicated, but you already know that.
There is almost always someone here, from somewhere on the planet, if you need to talk to someone, just reach out! I will talk anytime, I wish you the best.
Above all else, please know that you are not alone, this is a strong group, the founders, volunteers, and members of this entire Bens Friends group are very committed to supporting you.
Ali,
I take probiotics every day. It helps as well as omeprazole.
There is a blood test your dr can to to see if you’re gluten intolerant. Usually it also means that you can’t handle dairy. I’m unable to give up dairy but I don’t miss eating regular bread. There are so many great gluten free products now. I find that Wegmans has the best selection.
I understand your pain also. It' really hard to have the desire to do things but not the physical ability. I'm going soon to be evaluated for Ehlers Danlos Syndrome. Fibro, stomach issues, and other things can be symptoms of EDS. I have hypermobility too which is a big indicator of it. A lot of Dr's don't know much about it because they consider it a "Zebra". They seem to know a lot more about fibro than EDS and they don't know enough about fibro imo lol. I get most of my info from www.ednf.org and other sites and boards I have found. I've seen ring splints for finger pain but I'm not sure if that would help or not. I do have a good rheumy who seems to know about both but I sure wish more Dr's would take such things more seriously. Hang in there and keep going. Hurting is so hard but we all have to just keep going and maybe they will come up with better ways to help us.
Wow, you sound like me! I wake up every morning praying that I will be able to get out of bed w/o any pain, but, so far, after 3 years, it has not happened. I do wonder what it would feel like to be normal again. Just walking, getting up from a chair, or bending is painful and I find myself moaning and groaning and it sucks! After I take my medication in the morning, I am able to do some stretches even though it hurts, I can manage. I do whatever chores need to be done because I know later in the day, I will not be able to do anything. Like you, I try to be normal and get together with friends but as the day goes on, I just want to go home and I feel I am not very good company because I have to lay down. I hope and pray everyday that there will be an answer for us. I went to get acupuncture the other day, and the next day I felt worse, but he said that was a good thing, that the toxins were moving inside me and getting out. This is an awful illness, as it drains you both physically and mentally. I hear you and I understand you. We are all in the same boat, just getting by day by day. You are too young to have this. As far as the stomach and finger pain, I don't know. Do you eat a lot of spicy foods? Maybe you should drink milk before you eat, as that will coat your stomach. Not sure about the finger pain. Do you do a lot of typing? Maybe you have carpel tunnel?
Sorry, dear, you feel so much pain, especially at your age. I'm guessing you still go to school. How are you able to function with studying? Do you have to take a lot of days off? Geez, I can't imagine how hard it must be for you.
Well, you take care as best as you can. Try to get enough sleep and also a nice hot bath with epsom salts will ease your pain for awhile.
Sorry that you are so young and have this wonderful fibro to deal with. Being young is hard enough with out dealing with the constant pain. I am not going to tell my story again, but you can read it if you want. I am lucky I have a cast iron stomach and can take my pain meds and all of the other meds i am on. My pcp is great, he is the first pcp in our area to diagonis fibro. I understand what you are going through, everybody on this site can. Be glad that you have friends that support you and are there for you. Fibro robs so much of your life, but you have to take advantage of your good days when ever they come along. My wife and I got into it this weekend because I could not explain something to her. Its hard on relationships when you can't remember things, you don't feel good, you get depressed because of all the side effects of fibro and the meds. just keep your head up and remember your not alone. This is a great place to vent, to get answers, to get understanding and support. Need anything just email me.
Sorry to hear you are having so much pain. I have awful stomach problems, too, and mine is a result of taking nsaids. I am seeing a great GI doc, and he has done wonders for me. I know it's no fun contemplating seeing another doctor, but, then again, if it means less pain, I'd probably try black magic! There are so many things that can result in tummy pain; it's hard to make a recommendation without knowing exactly what's going on.
I remember the first time I used prednisone, and woke up without any pain. I sat straight up and thought, wow, so this is how the lucky people feel every morning. I honestly never knew that.
Hang in there; it's worth the effort to take care of yourself. There will be bad days, and better days. And it is frustrating. Best to get your feelings out among folks who understand and care! Everyone on this board can relate to what you're experiencing. You certainly are not alone. Keep posting and let us know how you are getting along.
So I finally get to meet a fellow zebra! I was diagnosed with EDS Type II (hypermobility and skin) a few years ago. Wish I could say that getting a diagnosis helped things, but the truth is, most doctors don't know squat about it. In fact, most of them tell me I don't have it, even though I was diagnosed by two major medical centers and had the biopsy! Amazing, isn't it? Hoofbeats are sometimes from actual zebras!!
The geneticist who first diagnosed me insisted that I have my aorta looked at. Had to go to a specialist for that, and it involved a painless echocardiogram. Fortunately, I didn't have any irregularities, but they did tell me it's very important to get that done if you get an EDS diagnosis. Have you figured out which type you fit into?
There are a couple of Yahoo Groups I've found helpful in the past. (Google Yahoo Groups; when you get there, type Ehlers Danlos in the search box.) One is called "Edsers" and the other is CEDA (Canadian Ehlers Danlos Association). The CEDA group was very active when I was going there.
I have silver ring splints, and while I don't wear them all the time, I do find them helpful at times.
I'm like you with Ibuprofin but now that my ulcer has healed I occasionally take one with Ommeprazol, which reduces acid reflux. I've been told by my doctor that this is okay on occasion. Maybe you could ask yours?
I'm wondering if you're still experiencing a stomach ulcer though? Sort of sounds like it from the symptoms.
I know what you mean, some days are good, some are horrific, as you say. I don't know why.
I didn't know that diet drinks are bad for fibro! Can you tell me more about this?
Yes, I do care. It's nice to be able to help someone else who is also in pain and to help them feel more normal again. My best to you!
Do you have to have arthritis in order to take Meloxicam? I don't have it but the pain is identical and my rheumy said it's the same pain receptors, just no arthritis.
Oh good grief! I'm sorry to hear that! I've also heard that hypermobility can end up being very painful as you get older. I hope you don't have EDS! And that's a new one on me. Pretty sad that doctors aren't more up to snuff on these diseases.
Aliana, we all would like a day without pain! Wow, that would be great! Normal, what is that! Whatever you do, don't give up! Better days will come! Have a little faith! You are among friends here. We all can agree, we all suffer from some type of pain and agony.
Everyone has offered you great suggestions. I would encourage you to get into a water exercise program at your local ymca. Even if you can only manage to go once a week, that's a start. I really believe in exercise, it keeps me mobile. Most of our medications that I take, are very hard on my stomach. Several of us take medication fo our stomachs. I have a generic prescription, but I cannot think of the name of it off the top of my head. Take care. Feel better.