Hello everyone, i am from London uk and am 25 years old. for many years i have suffered many health problems like 2 hospitalisations due to inflammed gallbladder, endometriosis chronic pain all over, mainly in my joints and muscles, especially first thing in the morning.
the pain radiates down my left arm, shoulder blade, left pelvic region, wrists, ankles etc. i recently am suffering from dry patches on my skin on my back. i belive my symptoms of the endometriosis are comign back too. i am always tired no matter how much rest i get. headaches. i also have an underactive thyroid.
i have been tested for many things that come back negative like arthritis, lupus. i am seeing a rhmetologist next month so hopefully he can help me but after looking on many websites my symptoms all seem to relate to fybro. can anyone else relate to me?
its so hard everyday being in pain and aching all over, i feel like a 95 year old in a 25 year olds body. i dont have the stamina to do most things, and the pain really gets me down. nobody really understands except my mum who suffers from arthritis and knows my pain. my boyfirend tries to be supportive but it must be hard for him to put up with me constantly moaning and not being able to do things.
Alos, if you get this pain- how can you differenciate it from fybro or something else seriously wrong, pain is usally a warning sign that something is wrong, how can you tell if its a new problem or just a symptom of fybro?
any help or advice would be so much appreciated. i just want to know whats wrong with me :-( surely a 25 year old shouldnt be feeling like this
Hi Kayleigh, I think so many of us can relate to exactly how you are feeling. Pain and ache every where all the time and oh boy talk about being tired, I have mastered falling asleep sitting up to the T, lol. I am one of the lucky ones that my doctor listens to me, she has checked me for almost everything or has sent me to a specialist for some of my symptoms. So far everything else has been roled out for me thank goodness. Your Rhuemy should be able to get to the bottom of this. Best of luck to you and I sure hope you get some answers... Hugs, Robin
I really really don't think it's anything terminal, don't worry! Your symptoms are pretty much the most common ones associated with fibromyalgia, besides your thyroid issues. It's very disheartening to go thru all of these tests, and always end up with a negative results. Not that anyone wants these illnesses, but we just want an answer for why we feel so sick all the time.
It's very hard for loved ones to deal with also, because they can't see anything wrong, so they don't understand. It's great that your boyfriend tries to be supportive, has he tried to learn more about fibro? There is a lot of really good information specifically for loved ones out there, I will find some for you in case he'd like to read them.
The best thing you can do right now is to see the Rheumatologist next month, he's going to be the one who is best suited to diagnose and treat you. Don't lose hope, you won't feel like you're 95 once you get on a treatment, and we've all felt the same way you do at one point. I still do a lot of the time!
Hang in there, I'm sure this appointment is going to help you find some answers.
Hugs, Renie♥
Edit: Kayleigh, check out this category in the discussions, maybe there is something you can find to help better explain what you are going thru: Information to Share with Loved Ones
thank you so much for your help guys you have really helped put my mind at rest. i totally agree that it just gets to the point where you just want to know what is wrong you just want answers.
sometimes i feel so sad because i think, ive only got one life to live and i can barely live it with all these problems.
does the treatment really help?
once again thank you so much for your help, its lovely to have some body who can relate to you xxxx
Honestly? Once you find the right treatment, it can give you back your quality of life. But sometimes it's a long, hard road to find the right one. The best thing to have is a good Rheumatologist who listens, and will work to find that treatment best suited for you. The possibilities are endless, because there is great success with alternative medicines, massages, specialized exercise programs, new medications... you just have to find the right one, and be patient. That's the worst part!
It's normal to be sad, I would worry if you weren't. You're facing a chronic illness, and that's really scary. Right now I'm sure it's all you can think about, between doctors and feeling so ill. But once you get on the right track, it tends to go to the back of your mind, and it doesn't consume you. Any chronic illness causes us to grieve over the life we are losing, and the things we can no longer do. That's totally normal, and to be expected.
Just talking to the Rheumatologist is going to make you feel SO much better, to finally get some answers.
im seeing my mums rheumatologist so she knows the family hisotry and shes been my mums doctor for 10 years and my mum says shes very good. so fingers crossed!
just talking to you guys helps so much more.
im glad i found this website, thank you so much xxxxx
Oh you poor thing. You're right, no 25 year old should feel like that, and yet fibro makes people who are even younger feel like they are in their 90's! Yes, it IS that painful. I'm 50 and although that probably seems pretty old to you, I felt pretty good before the fibro. Now I struggle to get off the bed, to stand, to walk, to work. What a bear this illness is!
Honey, I can't tell you if what you have is fibro or something else - only your doctors can figure that one out. However, I will ask if your dry skin could be psoriasis? If so, you might have psoriatic arthritis, which is a degenerative disease. Hopefully your rheumatologist will look into everything else that is similar to fibro and eliminate them all. Fibro, while rotten and painful, isn't degenerative.
As for understanding, it is a hard illness to wrap your brain around, even if you are the one with it! I can't imagine getting into someone's head and feeling the pain if I didn't have it myself. In my opinion, all you can do is ask for his patience when you feel poorly.
This is a great place to come to talk to o ther people with fibro. We understand the pain you're in, because we're in it too. We KNOW you aren't making it up and it's not caused by depression or stress. It's very real. And distressing. We have to learn new ways to cope. And we can. And we do. I hope you do keep coming because you can find some very good tips here, plus a lot of nice people.
Hugs to you!
Petunia
Many of your symptoms do sound like fibro, Endometriosis is suffered by quite a few fellow fibro sufferers, as are migraine headaches and an underactive thyroid.
Pretty name for a pretty gal! You are on the right track! A good Rheumatologist is our very best hope, and going to your Mother's Doctor is a plus for sure, he is familiar and he is trusted.
Please give him time to ask questions, run tests and go through procedure, I know you want answers and relief years ago, and both will come. This is a positive step in the right direction.
hi,i was just reading your message over and all the great comments that you got from other Fibro sufferers and i just happen to be another one of them too.I have had fibro for 30 years now and i'm 62 and feel like 102 and it was a real runaround of tests, doctors...always saying it was the flu,stress which is a componet to fibro because stress just adds to it and you don't get the flu 6 times in a 6 month period.i was put in hospital filling me with drugs and i insisted to go to university hospital in london, ontario and was there and within two days the arthritic doctor and his team told me i had Fibromyalgia and chronic fatigue syndrone,which usually goes with it...My marriage fell apart as he didn't understand or care...but its been a long rocky road but i hope you get to the Arthritic Doctoer and get the right meds, etc. at least then you know what you have....best of luck and god bless you and your Family and others so they might try harder to understand....soft hugs
Aloha Kayleigh: Pretty name. Hi, there. We can all relate to what you are going through. It took a year before I found a doctor who said I had fibro. I was happy to finally have a diagnosis. Here I am 4 years later, after many medications, alternative treatments, physical therapy, psychiatrist, a psychologist and on and on. Has it gotten better? No. 4 years ago I was able to walk on my own, then I needed a cane, then a walker and now a scooter. I still try different things in hopes of some relief so I can walk again without moaning and groaning. I feel your pain and we all hope someday that they whoever they may be, will find a cure for this. We will not die from this but as they say, you have to learn to live with it and not consume your life. I say, how can it not when every movement you make hurts so bad you want to scream out and cry? I guess I am weak. Some people can tolerate the pain better than others. I am hoping that I can learn how to meditate and hopefully, maybe even my psychologist can hypnotize me to find out what is going on. The purpose of this to communicate with other people who have fibro and see how they are handling it and maybe see if someone found something that works for them. I found after 4 years of searching that the doctors will only give you prescription drugs until something works for you, nothing really helped me that much until the drugs got stronger and then they didn't even work anymore so I had to get off of them. Now I am taking a holistic way, where they really do extensive blood tests and get to know you, as a person, then they will suggest supplements for you. However, I would suggest you still go to your rhuemy to check out your thyroid and skin problems. As far as fibro, the doctors will first start you out with either Cymbalta, Savella or Lyrica. For some people it works for them, hopefully you will be lucky enough to get relief. I wish you the best!
At the moment the only way to diagnose fibromyalgia is by excluding all other conditions. hopefully one day soon there will be a readily available test.
I spent three years until they told me that I had it, and others have spent many years. Sorry that you have to put up with this when so young, I hope your doctor understands your frustration and starts you on some medications. Good Luck Barb
Fibromyalgia is diagnosed based on 2 criteria:A history of widespread (all four quadrants of the body) pain lasting for 3 months or longer and have at least 11 out of 18 predesignated sites on the body, known as "tender points". A tender point is a designated point on the body that feels painful if 4 kilograms of pressure are applied to it. Exercise hurts but it eventually makes you feel a little better.I was diagnosed with Epstein/Barr about 23 years ago. A short while later, I was diagnosed with Fibromyalgia. If you have Physicians in the UK that specialize in Pain Management and Rehabilitation Medicine, I would suggest that type of specialist. Be sure to get a fairly young M.D. as Fibro is a newer syndrome. Good luck! Diane Z.
Yes, I would have everything ruled out before I am settled for just the fibromyalgia diagnosis. You may have that for sure. I have multiple disabilities. Fibro was the last I was diagnosed with. Good luck hon.
Yes, all life is terminal… With the fibro I ask myself the same question every day. I feel like I am going to die young as this illness is so debilitating. When mine started a decade ago it was moderate but it has gotten really bad over the last three years. In my case the illness has been progressive. I know that a lot of mine is from Sjogren’s and autoimmune thyroid disease. I think that some fibromyalgia is dissregulation of the autonomic nervous system. Fibromyalgia is very common in autoimmune diseases like Lupus and Sjogrens, and also autoimmune hypothyroidism.
When a symptom is specific, such as dry skin, localized spinal pain, etc., I tell my doctor. Not all things are fibro, so we have to be careful not to dismiss unusual symptoms.
It will help with the fatigue if you can study what you do and pace yourself. If I know I will do something such as going out to dinner, I take it easy that day - and also rest the day before. Fibro can have a delayed fatigue as well. There is a saying "Play today, pay tomorrow". I find that if I do a activity that will fatigue me, I feel it 24-48 hours later. Since I know this, I can schedule days when I keep my days free to rest.
I also find at least one pleasant thing to do each day. I love to write, read, and when possible, knit. I also have 2 dogs and 2 cats, all rescued from abusive environments. It gives me such pleasure to introduce them to being loved. I study their reactions and can guess what they each went through. As I watch their progress, I actually feel better, too.
Fibro hurts, fibro wears us out. But there are still ways to find meaning and pleasure in life. Hang in there! This is a great board for learning as well as being with others who understand.
you gusy are the best!!! i have come into work today feeling so rubbish and reading all your comments has made me feel so much better.
today i think my thyroid is playing up because my neck is really sore.
its true i may have some form of arthritis because my mother has psooriatic arthritis, which could explain my dry skin also.
its not so much the pain that gets me down, its the aching. pain i can mask with pain killers but nothing seems to help with the aches.
i dont know about you guys but in england you can wait months for an appointment, i have been back and forth for probably 2 years now complaining of a symptom, they seem to treat the symptom but not look at the underlying cause. there is now ay one person can have so many individual things wrong without one big illness causing it all to happen. its a shame we have to do our own research and push our own doctors to help us before they do!
my appointment is on the 4th of april, so i will be sure to let you all know how it goes.
thank you all so much for your comments and compliments on my name lol. all have a great weekend and im sending you lots of hugs from the uk xxxxxx
I have primary Psoriatic Arthritis without ever having Psoriasis, (though it could show up at any time) I was diagnosed by my pitted fingernails. Yes, I have the dry skin too, while all of my grand kids have Psoriasis. My Rheumatologist is also a Univ Prof, so he teaches, and insists that it is a genetic disease.
I am currently on a weekly Enbrel shot that has made a big difference in my life, it slows down the progression of the disease. I hope that these new biologic drugs are not as tough for you to get in the UK as they are in Australia, but if you should get this diagnosis, fight for a biologic!!!!! They are the drugs of the future and can pinpoint where it is needed to go right down to the very cell, by passing the systems of our body where side effects usually take place.
Keep us in the loop, please!
Big hugs,
SK
Oh America voted this into existance, by re-electing our current president, so they will soon find how long it's going to take for an appointment, or for a test, for a needed surgery, or life saving measures!! They obviously have no acquaintances outside of this country! Rue the day!
Have you felt your neck for specific pain points? If you find them, they could be trigger points from chronic myofascial pain (connective tissue pain). Myofascial pain often accompanies fibro. I have many trigger points along my neck. If I press on one, it hurts at first, then the muscle relaxes.
Trigger points are usually in the belly of the muscle, the fat part, but can also be where the tendon connects to bone. A common neck one starts at the back of the ear and goes to the front center of your collarbone. Trigger points can have "friends" which activate when one acts up. If I don't stop the process, I can feel like my muscles are gently choking me. If this has been bothering you for several years, you could be dealing with trigger points.
I'm no doctor but it's worth looking into. I have had trigger points for years, and they are like old nemeses with which I play detective.
Have you read any books which mention trigger points or myofascial pain? A good resource will show common trigger points and their range of influence. I find them very helpful. There may be something online, but I don't know of one yet. It may be out there.Another search term for this therapeutic pressure is "accupressure".
I have found a heating pad shaped like a collar to cover my neck and shoulders, and it helps, but does not get the trigger points to relax. I have to do that through pressure.
In the US, once I see a specialist, it can take 2-4 months to get an appointment, even if I am a regular patient. Doing research into possibilities helps me make the most of my 15 minutes with the doctor! I compliment you on thinking through all possibilities before you see the doctor. It will help make that appointment time more productive. Kudos!