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Newly Diagnosed
22 Replies
hiborox - April 14

Hey there.

I am newly diagnosed with Fibro, after 5 years of being a medical mystery. I am feeling pretty down after being diagnosed. All I wanted for years was an answer, and now that I have it I am scared, and upset. Partly because of the life long diagnoses, and that there isnt a cure. I am only 20 years old, and studying to be a nurse. I am so afraid of my illness getting in the way of my career. I also feel very alone right now. I feel like I could talk to my friends and family forever about this, but they cant make me feel better. :( I can't think of anything but this. The neurologist put me on Cymbalta, and this is day two. I have all the tender points, and am tender just if you put enough pressure anywhere. I have too many symptoms to list, and suffer extreme fatigue, I have to push myself to do anything. Sorry to whine, I feel like thats all I do.

Thanks[3

 

Jocelyn - April 14

I am sorry to hear that you were diagnosed with this disease. As you read the many posts on this site, you will find that many people have found ways that helped relieve their pain. You will find that what drug works for one person will not work for another. Be careful taking any drugs that you are prescribed without looking up the side effects. Some of these drugs are worse than the disease. People have had severe withdrawals from many prescribed drugs.

Everyone here are more than happy to talk to you. We have all felt alone at one time or another. We have all felt desperate and some of us still are. I know I am still searching for answers. I believe that when you have Fibro, there is a possibility that one may have another underlying disease that has been missed.

Keep us posted and browse through the links.

 

hiborox - April 14

Thank you so much for your reply. I feel like my family doesn't think its a big deal...I feel like it is. I guess its hard since its not well known. I am so sick of hurting. I know I need to accept this, but I'm stuck in a rut right now.

 

t3apps - April 15

Hang in there hiborox, we have all been in the "newly diagnosed" position and the "why me" that goes along with it. As an Air Traffic Controller, any of the medications that are considered possibly effective are banned and I can't work active traffic while I am on them - that's why after a 21 year career, I'm working on paperwork part of the time and taking leave without pay for the rest of it. Are the drugs helping? Who knows - some of them might be, but I'm taking so many of them that I can't tell which ones help and which ones are making me worse. At this point since I still hurt and have significant limitations, I'm afraid to stop everything because if any of them are helping I'm not sure I can face how I'd feel if I was totally drug-free.

Unfortunately, at 43 I'm not eligible to retire, so I have to keep plugging away.

I can also relate to the family that doesn't seem to understand - my mom still asks me "when are you going back to work?" My father keeps consulting his friends that have medical and/or psychological training when I tell him what my current status is, or what my Rheumatologist told me at the last visit. Then he doesn't understand when I follow the guidance of my doctor instead of the one he got from a friend. My fiance, whom I thought really understood and has been extremely supportive, has been telling me recently that "you should just stop taking all of the meds," "you never used to be this lethargic," "if you would just get up and get back to your old routine, you'd be OK," and of course "if you would loose the 30 pounds you've picked up in the last few years, you would be back to your old self." Believe me, I'd be the first one to jump up and down if I could sleep through the night and wake up with less pain so that it doesn't take me 30 minutes or so to get out of bed and start to face the day.

I also seem to keep finding other stuff to pick up - Anemia, Vitamin deficiencies (B12 & D), and the most recent one, Ventibular Neuritis - more commonly known by it's primary symptom, Vertigo. I actually went into work on Tuesday, Apr 3 - and promptly had an attack and collapsed on the floor, unresponsive for a couple of minutes. Of course, the first thing nearly everyone asked me was "is it related to all of the drugs you take?" Maybe - but who can tell? Nothing showed up on any of the tests.

I didn't mean to dump all of that on you as a new member. This forum is a welcome place to post and receive responses from people who know where you are and can, hopefully, give you some ideas on how to cope with your current state.

Lisa

 

Jocelyn - April 15

Lisa,

It is great that you shared so much of yourself to a newly diagnosed person on this web site. People need to know they are not alone and that everyone is struggling, either with pain or drubs or both. I am taking the advise, I believe January, who spoke about a Gluten Free diet, helping with pain. Of course, everyone is different, but I try to incorporate into my life things I have learned from here, hoping beyond all that I may find some extra relief.

The Gluten Free diet can be expensive if you need to feed your entire family, but if you are buying things for one person, the extra expense is not too bad. I tested allergic to Soy and tomatoe's as well as wheat and walnuts and particular fruits and decided to eliminate them from my diet as well, which includes, night shade vegetables, like Tomato's, Potatoe's and Peppers etc.

Nonetheless, I took my tired body to the Whole Food store and a large magnifing glass so that I could read every ingrediant in each food. I can't believe how hard it is to find food without soy and I am so allergic to it. But...I did. The only problem I ran into is that unless I back things myself, which I may have to if I feel this works, is that I couldn't find everything without potato starch, which comes from a night shade vegetable. That being said, if I find a difference in my pain just from decreasing everything else, then I might start baking my own stuff on the weekends, since I work all week. I too, cannot take the medication that is prescribed because I work in accounting and I cannot focus on the numbers and my brain and fingers done work on the key board. Oh well. I will let everyone know if I feel any difference in about a month after being on this diet. The weather is getting warmer now and I usually feel better during these months. We will see.

As far as people being understanding, it is very difficult to get people to understand your situation when you look perfectly well. My mother always told me that because she has Lupus and people never thought to offer her an help. They just thought she was fine.

 

hiborox - April 15

Thank you both so much for replying to my post. It is so nice to see others points of view who also have this to deal with. I just got back inside from making myself walk. I need to fight through the fatigue and start working out. I did a mile today in 15 min. I took it slow, but I can't do much better anyway. It was also 80 degrees, ugh. Do you guys suffer in the heat more too? I can't put up with anything much more than 70 degrees. The heat makes my fatigue a thousand times worse, and I sweat like a pig. The medicine made me really sick to my stomach on the 3rd day I took it, but other than a total loss of appetite, no other symptoms have occurred. I am so happy to have you all, I feel so welcome here at the forum. Thank you

 

Jocelyn - April 16

Your welcome and it is nice to have friends who understand what you are going through. I think it is great that you were able to push yourself to take a walk, even in the heat! That is an accomplishment in itself, for people like us. Since I work all week I try to get as much housework done on the weekend as possible. My husband does help out with the laundry and cooking during the week. He is very supportive and I am very fortunate in that respect.


I too, have the problem with the heat, especially when it hits in the 80 degree area. Of course, I have problems in the real cold too! Today was in the 80's and I wanted to take my 6 year old German Shepherd for a walk, but after vacuuming and straightening up, I was too tire and my legs were throbbing, so I laid down for a nap. After the nap my legs felt better and I ate dinner and gave the dog a bath. That in itself was an effort. Then I took him for a walk. I don't think I did quite a mile, I'm guessing 3/4 of a mile, but it took about 20 minutes because I walk so slow. My poor dog doesn't get much exercise the way I walk, so we stop down the road for him to play with his dog friend "Jake" who is actually his real dog nephew. That tires him so when we get back home he is happy. I am feeling luck at this point because last year I couldn't walk at all.

My legs and hips pained me so much that I couldn't walk, I really thought I would end up in a wheel chair, but after seeing a physical therapist he has helped me a lot. Because of my job, I cannot take anything stronger than Advil for the pain.

During the summer months, because I can't stand the heat, we put a pool in so that I could get exercise without getting sick from the heat. The problem was, depending on the type of weather we had, the water would be too cold. Even at 80 degrees that is too cold for me. I need it to be around 89 degrees in order to be comfortable. My husband put in a pool heater that runs off of our oil burner to save money and it is awesome! I am able to enjoy the hot weather and stay comfortable in the water all day. When it is real hot out the pool water seems too hot to cool down, but as soon as the sun starts to go down the water feels is perfect and I can swim for a long time because my joints don't feel and pressure. I do feel sore the next day, but it is worth it.

To be honest the only time I feel like a normal person is when I am in the water. I feel free of everything feels like it used to. My husband loves the water too, so it gives us something to do together that we both like. That is the hard part, I had to give up so many things that I like to do and that really hurt. Walking my dog is a pleasure I always enjoyed, right now it is a challenge just to walk him. I hope some day walking him will be a pleasure once more.

It is 8:12 pm right now. My lower back hurts from washing the dog, my legs hurt from cleaning and walking the dog, and the bottom of my feet kill me from being on them so much, but I consider this to be a good day. Tomorrow up at 6:00 on the road by 7:00 and working until 4:30, and arriving home at 5:15. That will be my day tomorrow and for the rest of the week. I am taking a 1/2 or a full day on Thursday. I really wish I could work a 4 day work week, but my work makes me work 40 hours, because of the job requirement and the work that comes in.

Okay, I wrote a novel. I'm on day 2 of my glueten free diet....I have hope it is going to help me, if not it is going to help my stomach! I've notice that already, not stomach pains from drinking milk, even lactose mile. I tried Rice Milk and was surprisingly good and my cereal wasn't bad at all.

Take care everyone and keep the chin up hiborox!

 

hiborox - April 16

I would be so excited if I was able to get a dog to walk every day. I have wanted a white shepherd for years. I can't get a dog until I change my living arrangements. I do have two cats though, so I get the cuddle aspect, just not the walking buddy. My boyfriend of over 3 years is very supportive, but I do feel that he has trouble understanding fully. A big part of it is that we are young. I am only 20. Thats a big part of my problem with acceptance too. I can't enjoy things the usual 20 somethings can. Losing weight is a huge challenge for me since I cant exercise. I know you guys understand. I get so frustrated when walking around a store wears me out so badly. I have my good days, and I have my bad days with accepting my Fibro. I sometimes just cry alone, thinking about my future, and how hard it will be now. I want kids, and fear going through pregnancy, and raising toddlers, etc. I don't want to be the mommy who cant enjoy things with the family. Sorry if this is a huge downer. I just feel so comfortable ranting on here. I feel like my family has heard this 100000 times, and I could just keep saying it to them, but never feel better. Invisible illnesses are the worst. At least with a broken foot, or a surgical wound people can see the evidence. When you guys post it makes me feel so much better knowing im not alone. Thats all for my rant. Today was a quiet day. I laid in bed, went on my walk, and had dinner at my mom's. Still, im completely worn out.

goodnight all.

 

Jocelyn - April 16

hiborox,

I am glad you feel comfortable enough to write your feelings and and and rave. This is the place to do it because we all understand your frustrations, and you are so young. I am 56, but have had Fibro since my early 30's. I had two children and I was tired, and I had a lot of pain in my back from picking them up until they could walk. I was able to enjoy them, but did take naps ect. whenever I could. Everyone's Fibro is different and you may be more advaced at your age with it than I was when I was younger. My Fibro, when I was younger, would wax and wain with intensity. Sometimes I could go for months with pain that wasn't bad and other times, things were not so good. I did push myself more when I had children and I think the children helped me get through things and kept be mvoing and healthier. My childred are all grown and my Fibro has worsened, I swear my lack of having to run after them and always on the go has made it worse. I know people don't understand, but it is exhausting to people like us. I was always so tired at supper time I barely would work myself through it, but I had to feed the kids. I never had the energy that other moms had, but I was lucky enought to get through. I know there are moms out there that are having a harder time that I did.

As far as the weight goes, I hear you loud and clear. When I married at 20 years of age, I weighed 101 lbs. The doctors wanted me to gain weight. I ate and ate and still no weight gain. I turned 30 and Fibro started in and the weight started to slowing ebb it's way up. At one point I went to the doctors and he told me how good I looked, since I gained weight. Well, by my next visit, I had gain 10 more pounds and he told me to lose weight. That was the FIRST time in my life I was told to lose weight, it was always gain weight and I always was eating. It was my metabolism that kept me slim. However, I am now 56 and I weight a whopping 162 lbs. Isn't that great for someone who was alwas considered by doctors as too slim! The inactivity is driving my weight up and the anxiety of this disease causes me to seek food as comfort. So...I am trying to accept that my weight will never be great, but am working on losing 5 lbs at a time. It may not happen, but I am forcing myself to walk my dog every night. It may not be a big walk, but it is a walk.

I slept real well last night, but when I got into work today, my legs are painful. There are sharp pains and some throbbing while I'm sitting at my desk.

However, it is a beautiful hot day outside and I am going to go to the mall on my lunch hour and pick up my dress for my nephew's wedding in June and get some gas. Just thinking aoubt it makes me tired. Oh well...I'm leaving now, it is almost 2:00. I always take late lunches because the mall isn't so crowded and I can find a parking spot!

Take care and keep the faith. It is difficult to accept what we have. I'll admit, I still am not ready to accept it after all these years. I just keep fighting and thinking, noooooo, it is going to go away. Maybe I can trick my body!

 

Jocelyn - April 16

oh, sorry for all the typo's I hope you understand what I wrote. At work I am in a hurry, but at home my laptop is small I can't proof read. Oh well!

 

Jocelyn - April 16

Anyway....Got home and it is now 7:27. I took my dog for a walk, I almost died, it was still so hot. Between the heat and the pain, I made it through it and I'm glad I did. Every walk I make is a walk I couldn't do last year. Thank gawd my hubby put the AC on, the house is cool and I am cooling down before I take my bath and soak my aching body. I will throw some epson salt in the water tonight. Hopefully that will help a bit. Hope all is well. Tomorrow is another day at work. I hope you are feeling better today, keep me posted. I would consider today a fair day, but not past that. I did make it to the mall and I got my dress. So another accomplishment. You have to give yourself credit when you are able to do just the smallest of things. No one else will understand.

 

Jocelyn - April 16

oh yeah, give your cuddle to your kitties from me :) They sound so cute :) White German Shepherds are rare, I would love to see one, but not own one. I can't believe the hair my Shepherd has. In my condition, I could never raise another dog and I would love a cat, but am allergic to them, so I guess my Axel will be the last dog I will own. I've had a dog since I was three, and to think I will have to live without one brings me to tears. I have had dogs that don't shed too, however, they have to be groomed and that can be expensive, so I used to groom them myself, however, again, my Fibro won't allow it and as the dog ages, it is painful for them to be groomed. I used to feel so bad for them, so that's why I went back to my Shepherds. Oh, I just can't win! See, we all feel that way. Sorry I wrote so much today. I was in a gabby mood.

 

nikita3 - April 17

I am blessed to have a beautiful tri-coloured Kelpie with boundless energy. Her name is Seta. My boyfriend and I usually give her two walks a day, but he does most of the walking as I often won't have the energy to go very far. Sometimes I can walk half of the way and then am so slow on the way back that he and Seta spend most of the time standing there waiting for me to catch up! If I know I'm going to be like that then I have learned to accept my limitations, deal with the guilt and stay at home and get something else done like some dishes. I also have the better days when I can go along and walk the whole way. There are also times when my boyfriend is not at home and I do have to walk Seta myself. It is a bit harder then as I have to force myself to go even if I don't have much energy. When I come home from work absolutely exhausted and just can't do it, sometimes I sleep for a couple of hours and then walk her later. That works quite well.

 

Jocelyn - April 17

I am still amazed at how much effort we still put into everything dispite the pain we are all in. We find ways in which to accomplish things that we really can't, but some how do!

I know most every dog there is, but I've never heard of a tri-coloured Kelpie, I will google it to see....be right back! Oh my, they are so beautiful! Do you live in Austrailia or did you get the dog from there???? Very instersting breed. Love it!

Hope you are feeling better.

 

t3apps - April 17

It seems that most of us have found excellent companions for our "down days" and to encourage us to get some exercise, even if we think it's not going to happen today - I have a Black Russian Terrier (135 pounds, 30" at the shoulder) and an English Lab (black) (85 pounds, 20" at the shoulder) who both think they are lapdogs. For those of you who look up the Terrier: no, we don't keep him in full show coat! I've found, however, that when I go for a walk, I'm better off leaving the dogs at home .... they both want to go much faster then I can muster, and they usually want to investigate in opposite directions. The Terrier is easier to walk then the Lab, but I can't take just one.

I too have lots of problems with the extremes of hot and cold - I am loosely defining extremes as below 55 and above 85. And if you add humidity, count me out. I am usually cold when I am sitting in the house, even if the heat is on, and air conditioning is almost certain to make me put on a sweatshirt. We live about two blocks off the Chesapeake Bay in MD - the dogs love to swim, but it makes the temperatures 5-10 degrees cooler then in the big cities about 30 miles west (DC) and north (Baltimore).

I've got to go dig up something for dinner - my sweetie has taken his daughter to basketball practice and won't be home for another couple of hours. I'd like to just stay here in the recliner, but I have to eat or my medications will make me sick to my stomach.

Hope everyone has a good night.

Lisa

 

Jocelyn - April 17

t3apps,

Wow, you have me beat with your dogs. I thought my 106 lb German Shepherd was big!!!! You win the prize, and you certainly have two beautiful dogs.

It sure is difficult to walk two dogs and even one that is good when you can't keep up to speed. We took my dog to obedience lessons when he was young and I taught him how to walk exactly to my speed and his walk is so nicely set. However, that was 5-6 years ago and guess what. His walk is still set to my speed of 5-6 years ago! I am trying to keep up with him when he is walking and I swear he is walking real fast, then I look down at his legs and feet and they are moving at a relatively smooth slow gait. But, geez, I feel like I am tripping over myself to keep up. He is so good, I am now trying to teach him how to do a grammy walk. Not much exercise for him, but at least I can keep up. Unfortunately, he keeps falling out of the grammy walk because he thinks he should be stepping up the pace. So...tonight I am recuperating from the last two nights of walking him. I am resting and he is looking at me with those eyes wondering why we are not walking tonight....so, I gave him a Frosty Paw and he is now happy :) A little humor is always nice on these sites.

Hugs to all and I hope everyone feels better! Keep in touch even if it about something other than our drugs and pains :)

Love ALL

 

hiborox - April 17

I love hearing from all of you about your days! I was busy yesterday, sorry I didn't get a chance to post. I was taking all the advantage I could of my miraculous semi-normal feeling day! I went to the gym and did little elliptical and swam some, rewarded myself with a quick dip in the hot tub after. I didn't push it too hard. I was surprised I wasn't more sore this morning. I want to walk every day at the very least, but today I'm not feeling it. Way too tired. I'm in nursing school full time, and also work a part time job. I did those back to back today, and I'm wiped out. I've used up every last bit of energy. I can't even stand to think about getting out of bed just to get in the shower later. Sigh. I worry about my career choice, but I push through the fibro as best as I can. So far I've been a fighter. I sat outside for a long time yesterday, I listened to my music, and watched nature. I thought about things for a long time, and I know that I can get through this as normally as I can manage. I've had a hard time accepting this at the age of 20, as you guys know. But Everything happens for a reason, and I have already spread lots of knowledge about fibro. I feel that it will make me a better nurse, even if I have my hard days with pain and fatigue on the job. Well, I need to go think about getting out of bed long enough to make some food, and eventually shower, ugh.

Thank you all so much for sharing with me! It makes me feel so much better knowing im not alone in this.

Take care, xoxo

 

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