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Young and extremely Frustrated
by Sekaya, Aug 06, 2008 03:35AM
Hey all, this is my first time posting in this forum. I haven't been very active on Medhelp before.
I was diagnosed with Fibromyalgia when I was 11, but now I'm 17 and we're starting to think it's Lupus, and not FM.
See, at the beginning of all this, I was extremely open to anything a doctor suggested for me to do. I was diagnosed at Children’s in Vancouver, and I’d had them since I was six (I used to have Rheumatoid Arthritis, so I’m not a stranger to doctors. As well as epilepsy before that. Both are in remission) and I had incredible trust in them. They basically put me on Amitriptyline at 25mg, told me to play with the other little kiddies, eat right, and exercise.
Nothing worked. My dose of Ami was upped to 50mg (triple the amount my Principal, who also by some fluke had FM) had at the time. And it still didn’t impact it. I lost over half my school year not just from being unable to get out of bed, because I was either too sore, too stiff, or just plain tired, but also from standard infections (I was on antibiotics every two weeks for either a throat infection, bronchitis, stomach flu, sinusitis… list goes on) that never seemed to be gone for more than a week. So I would be at school for a week, and away another week, sometimes even two weeks. I went from being an honor roll student to failing in several subjects over the next few years, until in grade 10 I had to drop out of public schooling and attempt homeschooling…
When I should be entering grade 12, I’m still trying to finish that year of grade 10. In grades 6,7,8, and 9 (I flunked math, but still was surviving) I was able to still function mentally. Despite being out of school more than I was in it, I managed to squeak onto honor roll once or twice a year from grade 7-9. I worked my buns off when I was reasonable, and shocked teachers, who accused me of skipping and slacking off, even though they knew about my health.
Well, when this all hit the bottom, finally, we went back to Children’s for more help, suspecting that it wasn’t FM, but the Arthritis flaring back up. After a ten minute examination, he said there was no swelling, so no Arthritis, and then went into a two hour long lecture of FM, on the importance of diet and exercise to “control the pain” and “positive thinking”.
Might I add, even when I had arthritis, I was the top in Gym class, was a long distance run and mountain biked regularly. I was very athletic. I’m not afraid of exercise. During this period, I was too sick to work out. I’d either have a throat infection or simply couldn’t get out of bed. Oftentimes, when I managed to get to the gym, I would only manage a week before getting a sinus infection or some other infection, which required me to stay home for a whole week. It made things worse. And I always ate healthy.
I was ready to walk out of the meeting, because he started to phrase things in the “its all in your head” sort of way.
We left that day hoping our visit with the OT and Physical therapist would be better.
It wasn’t.
The OT attacked my mother for putting me in homeschooling, saying I needed to be around other kids (Like I don’t hang out with my friends as often as posible?) and have a regular routine (which wasn’t very regular at all, by the point I left public school).
The physical therapist told me that “I didn’t have joint pain” and to “Admit it”.
I have zero respect now for this section of rheumatology at children’s now, obviously. I felt like I’d been stabbed in the back because they’d always LISTENED before.
Anyways… to sum up the rest, its been two years, and I’ve been tried on no other meds for FM, nothing to help the pain, nothing, nothing, nothing. After getting in a fight with a doctor early this febuary, to try me on Methotrexate and see if I improved on it, I finally experienced some relief. But the side effects grew worse than the benefits, so I recently stopped it. I was barely able to eat and had lost some weight from it.
I’ve also suspected, the last few months, that it might be Lupus. I’ve been tested all but one time for it, during a easier period, but it came back negative. However, I believe it’s a false negative or its just not plain showing. I’ve been developing new symptoms the last few years that don’t match up with FM, but do with Lupus. Now I’m anemic.
I’d probably not be so bitter if they had tried me on some drugs. There are treatments out there, I know, and I realise that they don’t always help everyone, but can’t I be tried on them? They’ve acted like Amitriptyline is the only drug available, and obviously, it isn’t, though it is popular.
I also understand Lupus/FM symptoms overlap a lot, an it can be hard diagnosing them correctly.
My list of symptoms:
- butterfly face rash on cheeks
- inability to focus/think
- anemia
- tired
- sore joints, especially knees, hands and wrists
- fainting spells
- muscle weakness (which causes collapse)
- migraines
- skin sensitivity (feels like my skin, all over my body, is on fire)
- Sensitivity to sunlight
- Eye pain (which baffles eye doctor)
- Low fever
- Shortness of breath
- Cold hands/Feet (like ice)
- Dizzy spells/ loss of balance
- Chronic Nausea
- Memory Loss
- Vomiting spells where I literally can’t stop puking, and I have to go to emerg to be stopped and given fluids. I just had an episode in july, and it took three different meds before I finally stopped, after 8 hours puking every 5 minutes. I slimmed down so much after that, its not funny.
I know many of these fit with FM, but there are a few that don’t that have only surfaced in the last two years. And when I’ve matched my list up with many Lupus lists, it does. Even the anemia is explained. And the fact I responded quite well to the methotrexate (my skin attacks were reduced, the muscle weakness disappeared, dizzy spells disappeared, and the stiffness/pain were reduced a bit…as well as my sleep improving, as I was pulling all nighters before because I was so sore) also makes me suspect lupus.
I also had 9 back-to-back (every two weeks) UTIs, which Children’s explained away as “the muscles around the bladder spasming” but all the doctors here confirmed them as UTIs (they did ALL the tests…another reason why I have no respect for Children’s). The fact I’ve had infections so often points that something else has to be going on. I was very healthy, arthritis aside, when I was young, and then… wham! I turned 11 and everything went to hell in a handbasket.
Anyways… I’m sorry this was so long. If you got through this, I was hoping for any other opinions/ideas you guys might have on it all. We were hoping to have me tried on some treatments this summer, but we’ve hit a brick wall. The family doctor is thinking about putting me on Gabapentin, but still hasn’t decided yet. We’ll be asking him next visit for it and seeing how it works. I’d like to be able to start catching up all my school work and being able to bike and have a life during the winter months, which I normally spend in bed sleeping or too stiff to go out.
Thanks for anything you can offer! its much appreciated.
I was diagnosed with Fibromyalgia when I was 11, but now I'm 17 and we're starting to think it's Lupus, and not FM.
See, at the beginning of all this, I was extremely open to anything a doctor suggested for me to do. I was diagnosed at Children’s in Vancouver, and I’d had them since I was six (I used to have Rheumatoid Arthritis, so I’m not a stranger to doctors. As well as epilepsy before that. Both are in remission) and I had incredible trust in them. They basically put me on Amitriptyline at 25mg, told me to play with the other little kiddies, eat right, and exercise.
Nothing worked. My dose of Ami was upped to 50mg (triple the amount my Principal, who also by some fluke had FM) had at the time. And it still didn’t impact it. I lost over half my school year not just from being unable to get out of bed, because I was either too sore, too stiff, or just plain tired, but also from standard infections (I was on antibiotics every two weeks for either a throat infection, bronchitis, stomach flu, sinusitis… list goes on) that never seemed to be gone for more than a week. So I would be at school for a week, and away another week, sometimes even two weeks. I went from being an honor roll student to failing in several subjects over the next few years, until in grade 10 I had to drop out of public schooling and attempt homeschooling…
When I should be entering grade 12, I’m still trying to finish that year of grade 10. In grades 6,7,8, and 9 (I flunked math, but still was surviving) I was able to still function mentally. Despite being out of school more than I was in it, I managed to squeak onto honor roll once or twice a year from grade 7-9. I worked my buns off when I was reasonable, and shocked teachers, who accused me of skipping and slacking off, even though they knew about my health.
Well, when this all hit the bottom, finally, we went back to Children’s for more help, suspecting that it wasn’t FM, but the Arthritis flaring back up. After a ten minute examination, he said there was no swelling, so no Arthritis, and then went into a two hour long lecture of FM, on the importance of diet and exercise to “control the pain” and “positive thinking”.
Might I add, even when I had arthritis, I was the top in Gym class, was a long distance run and mountain biked regularly. I was very athletic. I’m not afraid of exercise. During this period, I was too sick to work out. I’d either have a throat infection or simply couldn’t get out of bed. Oftentimes, when I managed to get to the gym, I would only manage a week before getting a sinus infection or some other infection, which required me to stay home for a whole week. It made things worse. And I always ate healthy.
I was ready to walk out of the meeting, because he started to phrase things in the “its all in your head” sort of way.
We left that day hoping our visit with the OT and Physical therapist would be better.
It wasn’t.
The OT attacked my mother for putting me in homeschooling, saying I needed to be around other kids (Like I don’t hang out with my friends as often as posible?) and have a regular routine (which wasn’t very regular at all, by the point I left public school).
The physical therapist told me that “I didn’t have joint pain” and to “Admit it”.
I have zero respect now for this section of rheumatology at children’s now, obviously. I felt like I’d been stabbed in the back because they’d always LISTENED before.
Anyways… to sum up the rest, its been two years, and I’ve been tried on no other meds for FM, nothing to help the pain, nothing, nothing, nothing. After getting in a fight with a doctor early this febuary, to try me on Methotrexate and see if I improved on it, I finally experienced some relief. But the side effects grew worse than the benefits, so I recently stopped it. I was barely able to eat and had lost some weight from it.
I’ve also suspected, the last few months, that it might be Lupus. I’ve been tested all but one time for it, during a easier period, but it came back negative. However, I believe it’s a false negative or its just not plain showing. I’ve been developing new symptoms the last few years that don’t match up with FM, but do with Lupus. Now I’m anemic.
I’d probably not be so bitter if they had tried me on some drugs. There are treatments out there, I know, and I realise that they don’t always help everyone, but can’t I be tried on them? They’ve acted like Amitriptyline is the only drug available, and obviously, it isn’t, though it is popular.
I also understand Lupus/FM symptoms overlap a lot, an it can be hard diagnosing them correctly.
My list of symptoms:
- butterfly face rash on cheeks
- inability to focus/think
- anemia
- tired
- sore joints, especially knees, hands and wrists
- fainting spells
- muscle weakness (which causes collapse)
- migraines
- skin sensitivity (feels like my skin, all over my body, is on fire)
- Sensitivity to sunlight
- Eye pain (which baffles eye doctor)
- Low fever
- Shortness of breath
- Cold hands/Feet (like ice)
- Dizzy spells/ loss of balance
- Chronic Nausea
- Memory Loss
- Vomiting spells where I literally can’t stop puking, and I have to go to emerg to be stopped and given fluids. I just had an episode in july, and it took three different meds before I finally stopped, after 8 hours puking every 5 minutes. I slimmed down so much after that, its not funny.
I know many of these fit with FM, but there are a few that don’t that have only surfaced in the last two years. And when I’ve matched my list up with many Lupus lists, it does. Even the anemia is explained. And the fact I responded quite well to the methotrexate (my skin attacks were reduced, the muscle weakness disappeared, dizzy spells disappeared, and the stiffness/pain were reduced a bit…as well as my sleep improving, as I was pulling all nighters before because I was so sore) also makes me suspect lupus.
I also had 9 back-to-back (every two weeks) UTIs, which Children’s explained away as “the muscles around the bladder spasming” but all the doctors here confirmed them as UTIs (they did ALL the tests…another reason why I have no respect for Children’s). The fact I’ve had infections so often points that something else has to be going on. I was very healthy, arthritis aside, when I was young, and then… wham! I turned 11 and everything went to hell in a handbasket.
Anyways… I’m sorry this was so long. If you got through this, I was hoping for any other opinions/ideas you guys might have on it all. We were hoping to have me tried on some treatments this summer, but we’ve hit a brick wall. The family doctor is thinking about putting me on Gabapentin, but still hasn’t decided yet. We’ll be asking him next visit for it and seeing how it works. I’d like to be able to start catching up all my school work and being able to bike and have a life during the winter months, which I normally spend in bed sleeping or too stiff to go out.
Thanks for anything you can offer! its much appreciated.
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Remember lupus and FM go hand in hand. So you may have had FM but are now getting lupus.
I was young when I was diagnosed with FM. I was 25 and just recently married. So just as I was about to really start my adult life it all came crashing down. After having FM for 9 years, my advice to you would be to focus on your health. All the things you want to do can be done in time. You need to improve your health first so you can do them.
Also you may want to copy and paste your post on to the Lupus forum so those who are more familiar with the disease can be of help :)
Take Care!
It could be lupus... or even CFS. I actually have all of your symptoms, except being anemic, having a butterfly rash and the vomiting spells.
However... I'm thinking more lupus because of the butterfly rash on your cheeks.
Gloria is right. Many people with autoimmune diseases, fibro or CFS have overlapping autoimmune conditions. You can have both fibro & lupus.
I think you have symptoms that sound like Lupus. I also believe that it is possible to have more than one autoimmune disorder. My grandmother has MS and Lupus. My whole family has a history of autoimmune disorders. Please don't give up and continue to have faith that someone will figure it out soon. I have been trying to get a dx for 4 yrs now and just now seem to have someone that wants to listen and pay attention to what I have to say and not think I am crazy. Please listen to your gut! Wish you luck!
pietiangel
I wonder if people with autoimmune diseases have the skin sensitivity and burning skin ? I've only seen fibro patients complain about that.
Anyhow... after reading research, I strongly believe that all of these "autoimmune" illnesses and that includes other illnesses that share the same characteristics as an autoimmune disease (lyme, CFS and fibro) are all Th1 inflammatory diseases.. and pathogens are the key to treating these illnesses, which are successive infections.
I would love to be tested for Lyme, at the very least to rule it out, but the test is nearly impossible to get in Canada. We do live in Northern BC, and we've all thought of the possibility after all the outdoor stuff I did and still somehow manage to do. We just can't afford to make a trip to the US though to have it conducted. Its something I'd have to talk about more with the family doctor, I'd imagine, to see if its in he can have it done or if its out of province.
Yes, there's a lot in Canada that say its not possible to have lyme disease, but the cases are rising. We know several people in town who went over the border and tests came back positive. They've been doing great since.
Gloria: Yes, I've thought of that as well. It would make sense then, and especially when it involves the more recent symptoms. I'm a classic FM diagnosis, according to doctors (for what little its worth... I'm not sure anymore) and one year it appeared to be getting a bit better. And then it started going back downhill and the newer symptoms (dizziness, muscle weakness, rash, migraines, and back to back infections... fainting, anemia) started.
Pieti: Its horrible, isn't it? I dunno if you've noticed similar, but... do you get a low fever and find you stop sweating? When I had my first episode and I went to the Emerg, I had a fairly high fever and wasn't sweating in the least, and when I moistened with a wet piece of paper towel (which hurt like heck) the water seemed to help... but as soon as the area dried again, the pain was worse. I wouldn't be surprised that it was evaporating the water from the cloth, and it helped bring the fever down which also helped the pain.
Oh, I wish it was so easy to get a different one. We've nearly exhausted all of the specialists we can see in town, so we're going to be inquiring soon about a referral to some out of town, that might be of some assistance. But yes, most of them are being downright jerks and just will not treat any of the symptoms that are the worst of them all. We've been accused of looking for a magic bullet by many, but... its not a cure we're asking for, just something to help me function! you'd think it wouldn't be hard to try me on several painkillers till one works.
While I realise all I can really do at this point in time is rest and try to feel better, I'm getting to that point where I just can't anymore. Earlier this year, the two things that had been keeping me sane even when schoolwork (online schooling or otherwise) was impossible were my writing and my singing. When the shortness of breath came, I couldn't sing without almost fainting from not enough air. And then I couldn't write because my concetration became so bad that it was amazing if I could get a page down. I'm used to putting out closer to 20 a day, not 1. Even now, my writing is at a standstill and while I can sing... I haven't been up to performing in public due to my unpredictable stomach and the havoc the butterflies would wreck on it. (I don't eat the whole day before singing due to them, and with my stomach now... well, I just wrapped an anthem a provincial ball game and I couldn't eat until the next morning, which was abnormal... I usually hoe in about two hours later)
So most of my days, I feel like a bum, sitting on the couch, forcing myself to eat, or sleeping. I've been forcing myself to bike again lately, and so far so good, but... I really miss not being able to do my favourite hobbies. I discovered both of them when I was initially diagnosed with FM, and they lifted me from my depression then. I'm a bit nervous about how not being able to do them will affect me in that aspect, so I still try my darndest to work on my writing in some form and sing in some form.
Patsy: I had both the RA and Lupus test, but my ANA, while not normal, isn't high either, more a low abnormal result. And the lupus came back negative... though both tests aren't always very reliable, and often some who turn out to be FM or another diagnosis are misdiagnosed with Lupus or RA. You would think it most logical to leap to what I last had (RA) and the possibility it is flaring, but... they're all wanting swelling joints, and while not all arthritis causes swelling, they refuse to consider it. We had to fight just to have the lupus test and RA test done.......and you know, I still don't think I was checked for Rheumatoid Factor. I can't really remember, so its something I'd have to check. I think they only checked ANA, to rule out RA.
Take care!
If your doctors agrees to sign for it, you can get a lyme western blot through Igenex labs in California. You would have to pay for it yourself. You call and order a kit and it is sent to you at no cost. You only pay when you send it in. A lyme western blot IGG/IGM is about $200. If you are interested google Igenex labs and read on it.
and finally one who does not dismiss your complaints and symptoms. finding a good support system,family,friends,etc never hurts. laughter makes every better
I found having multiple hobbies to be a benefit. i knitt when my hands allow,
walk when my legs are cooperating, swim if the suns not out etc.
i exercise at my own pace and i always always always soak in warm water daily.
because i do i now consider it one of my hobbies. bath soaks, candles,a good book,
calming music help to make it not seem so therapuetic.
hang in there and try not to give uo.
1. Have you ever had achy, painful and/or swollen joints for more than 3 months?
2. Have you ever had an unexplained fever of over 100 degrees for more than a few days?
3. Have you ever experienced persistent extreme fatigue/exhaustion and weakness for days or even weeks at a time, even after 6-8 hours of restful nighttime sleep?
4. Have you ever had a sensitivity to the sun where your skin "breaks out" after being in the sun (not a sunburn)?
5. Have you ever been told that you have a low blood count- anemia, low white cell count or a low platelet count?
6. Have you ever been told that you have protein in your urine?
7. Have you ever had chest pain with deep breathing for more than a few days (pleurisy)?
8. Do your fingers and/or toes become pale, numb or uncomfortable in the cold?
9. Have you ever had a prominent redness or color change on your face in the shape of a butterfly across the bridge of your nose and cheeks?
10. Have you ever had a seizure or convulsion?
11. Have you had any sores in your mouth that lasted more than two weeks?
*If you answer "yes" to at least three of these questions, the Lupus Foundation of America suggests that you consult with your doctor and discuss any questions that you may have about lupus.
Good luck and may God bless you.