"It's all in your head" :(

[Sekaya]

Hey guys, I'm new here. :)

I'm currently trying to get a diagnosis other than an "its all in your head" or "chronic pain" one. It feels like none of the doctors so far have looked beyond the most obvious symptom: pain in the joints and muscles.

The thing is, I'm not showing any swelling or signs of joint damage, so its assumed I'm not relapsing from my RA that I had as a kid. I was recently checked for MS, but it was before it worsened last. I didn't have the numbness in the tips of my fingers like now.

I don't see the neurologist again until may sometime. He has been the only one so far interested in getting to the bottom of this.

The rheumatologists I've seen so far say that its untreatable and to simply "exercise and eat right" and it should help. it's ******** I've done for 5 years now and hasn't helped. Its very frustrating, since I've fallen behind in school and will end up graduating a year behind my friends.

I don't know if its MS, but its on the suspects list. I'm nearly seventeen, so its quite young for something like that to be considered. it does run in the family though. I've had a lot of health problems for most of my life.

anyways, I kind of was swept away there. I just wanted to try and give some background info. it's almost 6am, so I know I'm probably sounding jumbled.

I've been experiencing a sort of half numbness in my fingertips. I can feel, but my sense of touch is dulled, like feeling something through silk.
Haven't been able to sleep more than 3 hours and not well.
Shortness of breath.
Nausea.
Near blackouts ( only 3 times. they disappear as soon as I sit and go as fast as they come, in under 5 min.)
Joint pain but no swelling
muscular pain
headaches
Skin sensitivity (feels like its on fire)
cold hands/feet
spiking temperatures that come in go in minutes.
Inability to concentrate; feels liking I'm trying to think through a fog.

I'm sure there's more but I'm having trouble remembering them all atm. I lost the sheet I have them written down on.
If you guys have any ideas, its much appreciated.

I used to have so much trust in medicine up till now. Now its just constant brush offs and people thinking that, because I'm a teenager, I MUST be making this all up or faking it. Its like my history is being ignored really.

Thanks for reading all this :)

[Momzilla]

How frustrating!  I'm so sorry you and your daughter are going through this.

Have you posted before?  If not, let me welcome you.  Others will, too.

There is just nothing worse than watching your child suffer, with no answers and no one much interested.  It's a shame no one is doing much more than "Take a Motrin, call me in the morning."

Is there a way to see a different rheumy?  I know specialists are hard to come by, it sounds like.  Is there a big hospital anywhere around?  Maybe you could get a referral that way.  Or perhaps an Infectious Diseases doc, or endocrinologist.  A lot of us have had good visits with endos.

Please stay with us, and don't give up.  There are a lot of mothers on this forum. (Sounds kind of funny!)  Dads, too.  We are here for you.

Take care,

Momzilla*

[DrMom45]

I am going to bookmark this page and let my 14 yr old daughter read this, it sounds like you two could write a book.  Unlike you, she has had no recognizable disorders until "THIS" arrived in our lives.  By "THIS" I mean muscle pain that appears in all 4 quadrants; is random, can last from seconds to minutes to hours to days!; is sometimes triggered by weather, emotions, or over-exertion, but can also occur for no apparent reason; varies in intensity from mildly annoying to debilitating; tender points in many of the typical fibro sites but also more than that (that is why her rheumy said it couldn't be fibro she hurt in too many spots and was too young); she wakes stiff and mildly achy every morning; is an extremely restless sleeper; extreme sensitivity to scents; has non-allergic rhinitis; very low tolerance to heat etc, etc, etc.  

We are also in Canada, but in rural Saskatchewan, so we have even less access to specialists than you :(  It is tough on her because so far, on average, the medical community has not been interested in finding out what is going on.  Our previous GP told her to take an ibuprofen a day and she would be fine!  Our new GP is more interested in trying to help.  The rheumy told her at the last appointment that he is stumped  and she may just have to accept that she may never know what is causing her pain...the only reason I keep taking her for appointments with him is that he is centred in one of our big hospitals, has easy access to other specialists and can get her appointments quicker than if we had to keep going through our GP.

All the docs concur that whatever she is suffering with it is not fatal and here they usually tell her that she should be happy with that.  While we are ecstatic that she is not suffering from any of the BIG BADDIES, we want a diagnosis.  She needs one because as she says, if you have a name for what is wrong with you others believe you are sick, if you don't pretty soon people stop believing you.  I need a diagnosis so that I can find an effective treatment for her...I'm a mom, I need to be able to help her when it hurts.

Anyhow that is our story, I hope things are going better for you.

[Sekaya]

Essdipity: We pretty much have a medical shortage. Nurses and doctors alike are in need. I had a bad episode of the skin sensitivity in Sept that seemed to have set off all that's followed. It felt like my skin was on fire and was definitely above my established pain threshold, so I was writhing a moaning and trying not to move too much as movement made it worse. and then of course, I'd jerk and make it worse. It was a 3 hour wait till they got me in, and I was the second most severe case in the waiting room, with a woman just as bad as me with abdominal pain. Only the two of us were admitted in that 3 hours. And after a bit longer, it went completely down. I had a fever, but it was down yet, and i had just taken tylenol, so it wasn't that either. It was extremely weird, but ever since I've been making sure I don't have another episode of that.
Yeah, we have two neuros in town, but the guy I'm seeing is new here. He has a controlled attitude, and he doesn't rule anything out. I was in the office with him for 2 hours, bordering on three. Hewas very thorough on checking me for possible causes. The older one in town is one that not a lot of good things are heard of, so I'm glad I have this one!
However, he's so packed that its difficult to see him very fast, so its a few months before I see him again. The rheumy is to see me again in april, If I remember right.
Oh, I know! It amazed how hostile they become towards me after everything I've been through with them. Its because I'm a teenager that they seem to think the cute, cuddly thing has turned into some mythological beast they can't get rid of. I thank my lucky stars every day that Dad taught me at such ayoung age how to read people, otherwise I'd be falling into different pits they dig to try and catch me, to strengthen their thinking. Most don't expect me to watch them that closely, but I do.

willowwoman7: Ohhh, ok. I wasn't sure about that, in diagnosing lupus. I don't think they've seriously checked more than the ANA. The doctor (the pedi) who carried out the test has barely mentioned anything to us, to which the GP is both shocked and angry. the GP basically explained his copy, but he didn't go too into detail, so its a question I can ask next.
I don't really get the redness, but I wonder... I will get this strange splotchy look on my skin, especially on my legs. Its hard to explain, but maybe I can take a picture. The dermatologist shrugged it off as being natural, since I'm incredibly pale, but bits of it'll go red and white forming a rash-like pattern, but it isn't raised. Something to think about.
Yes, I do have Fibromyalgia. I've had it since I was 11, so five years. I was a classic onset of it, with 14 trigger points intially up. In flare I have almost all 18 up.

Spastic: Haha, we're very familiar with Still's. Its what we've currently been suspecting, because of my past history with it. The problem I've been having is, because my joints aren't swelling, the rheumies refuse to diagnose it as Arthritis. So we've struck up some dirt to get me on some treatment. I was first put on Voltarin in november, which helped a lot at first but, since it was an increibly low dose, not for long. and recently we managed to get me on Methotraxate, but I just started a few weeks back and only today went up to four pills.
Haha, I think their heads are! ;)

Deb61: Oh, I know. Ours has done plenty of that in the last year.
           I know that my GP checked my thyroid function a while back and said I was normal, so It's lower on the list.
Haha, you learn fast when you deal with them all so much! I've been used to this since I was little, so it's not like I'm a fish out of water when new things happen.
I will. :)

[Deb61]

Sekaya,

It makes my blood boil when doctors are so lazy and thoughtless to tell a patient that their problems are all in their heads!  I've been told this before, and I guess I never recovered . . .

I have more than one autoimmune disease and I know that things can get pretty confusing.  I think that you need to find a really good neurologist to help you sort through things.  That's who brought it all together for me.  I've gone the rheumatological route because of a low titer ANA test.  Many autoimmune disorders will cause that.  

I was diagnosed with arthritis (which I don't think I have), fibromyalgia (which I also don't have), and Raynaud's (who knows!).  The only diseases that I know I have are thyroid disease and MS.  I know this from the clear cut spinal tap and MRI showing lesions and the blood work showing that I have a thyroid problem.  

By the way, many of the symptoms that you've described (joint pain, temperature regulation problems, cold hands/feet, etc.) went away after thyroid treatment.  It's just a thought.

I am quite impressed how knowledgeable you are at 17 and how you've learned to self-advocate for yourself.  Continue advocating for yourself and never let anyone make you feel crazy because you are sick with a true physical illness!

Deb

[spastic]

  I want you to google a condition called Still's Disease. It has rapidly spiking fevers and sometimes there might be a salmon colored rash. It is very rare about 1 in 100,000 people get it.  With your history of juvenile RA, Still's is also called Adult Onset Rheumatoid Arthritis. Make your dr's head spin with that one.

Wishing You Well,

Spastic Ada

[willowwoman7]

I don't get the discoloration in my hands and feet. I do know that when I take a hot shower, my feet turn bright red, almost, but not quite, scarlet. I myself have a very high positive ana, but it wasn't until they checked specifically for the AP protein that you only have with lupus, that they were able to diagnose me with it. I also have fibro along with everything else. The trouble is these things are all so hard to dx. They checked me for lupus for about 15 years before they pinned it down, and never did check me for MS until fall. That's when they found out I have many large lesions and have probably had it since my 20's. The point is, it isn't in your head and don't let the lack of dx make you crazy. The rheumatologist told me you can have a positive ana with fibro, you can also have raynauds. he just told me that in spring. have you been checked for fibro?

[essdipity]

Well, you're batting .500, anyway. I'm so glad you can count on your family. It's not surprising that some members don't 'get it,' as we see that here all the time.

As to the docs, a big BOO. A lot of our Canadian members have trouble getting the help they need, as of course do loads of Americans too. But from what I read, in Canada it's compounded by a severe doctor shortage. Neurologists everywhere are notoriously difficult, to use as neutral a term as I can, but when the supply is short and the demand is big, they can get even more attitude than usual. If you like and trust your neuro, then stick with him. As to the others, they have one hell of a nerve presuming you're either making things up or are secretly getting high. Interrogations should be limited to suspected criminals, not to young girls with documented serious medical problems.

Please keep posting here, as there's lots of accumulated wisdom. We'll do our best for you.

ess

[Sekaya]

Haha, don't worry about that! Mother hens are fine :)

Yup, the family is there a 100%. This is something everyone's fairly used to (except the grandmother, who it doesn't seem to register how sick I am to). I had a short bit of epilepsy when I was 3/4 (only 3 seizures), went into remission, and when I was six was diagnosed with JRA. I went into remission of that when I was 10 and when I was 11 developed FM.

Medical help, however-- not so much. Children's hospital in Vancouver (I'm canadian) basically told us last march I was making it all up, I was imagining it, and to get pyschological help to "deal with the pain". Ever since, we've had a hell of a time getting anything done. We fought tooth and nail a few weeks back to have me stuck on the methotraxate, to see if it would work or not. Figure it'll rule out whether its my arthritis relapsing. It worked miracles when I was younger.
I've always had a lot of trust in doctors, but after that episode (which extended over 3 days. It was not pretty.) not so much. I think the only one I trust completely is the GP, and the neurologist is close behind him. The pedi I've seen since I was 6 has lost it, and the new rheumy isn't getting my hopes up, though he's being very diplomatic, in which I give him a pat on the back for. Children's wasn't in the least diplomatic.

With all the doctors so far, I've been taken aside to be interrogated. They don't trust that I'm not into drugs (besides the meds I need for this...which isn't much, since they haven't wanted to really do anything before now) and they don't trust that I am as tight with my parents as I am. Several times in the last year they've attempted to drive wedges in between us as a family, and then accused my folks of "not letting me be independant".

Oh man, I really went off on a tangent, didn't I? Ah, I tend to do that a lot.

But yup, I've got a good support base family wise. I'm still getting some of the friends to fully realise how much worse than usual it is. They tend to get so used to it that they forget about, which is both a blessing and a curse, haha! :)

Thanks for the concern though. I know a lot of young people don't often have the understanding I've been given in the people surrounding them in their lives.

[essdipity]

Hi. I hate to come across like a mother hen, but you're awfully young to be battling all this stuff. Are you getting good medical help, and are your family supportive? You have way too much on your shoulders!

ess

[Sekaya]

I've been diagnosed with FM now for five years, so I'm quite familiar with that. CFS is something I've been thinking of for a while, but its been overlooked, among other things. So many of the symptoms overlap, that it can't be said for sure.

The fibromyalgia, however, has never caused joint pain previously, or the breathing issues, among other things. Its possible that I'm developing CFS which is worsening it, but at some points it feels like its a relapse of the JRA I had when I was little. I had systemic onset and it presented very similar to what I'm showing now.

But its those little symptoms that make me doubt. sensitivity to light, the numbness, etc.

I hope your diagnosis goes smoothly. Often with fibromyalgia they try to treat it with Amitriptyline, which I found didn't do much, if anything. when I first presented I was on 50mg, more than an adult (I was 11) and then lowered to 10 when I said it wans't helping. I weaned myself this summer from it, and found my body had actually grown addicted to it. It was hell getting off it.

[uk2]

Hi

I have raynaud's but don't get the full discolouration, i am also undx i have been discharged from my neuro as he says i have a pain condition and maybe fibromyalgia and am to see a rheumatolgist.

Have you read up on fibromyalgia as it has simular sx to what you are experiencing and CFS and there is also a condition with CFS that effects the pooling in your blood that makes you blackout and is determined by what postion you are in standing/sitting it begins with a d and i can't think of it for the life of me LOL as i have had this and posted it on the Fibromyaglia forum and a few people had experienced this and it had a name.

I hope that helps.

Sam

[Sekaya]

I don't know if it might be Raynaud's, but I'm not showing any discolouration in my hands or feet. They just get icy cold and the tips of my fingers do that odd numbness.

I keep suspecting Lupus, but I'm only a low positive on my ANA. I still want to redo the test though, considering it got much worse after the previous one. It might show something more now.

[willowwoman7]

I have both lupus and MS. Have you been checked for lupus? Both the rheumie and neuro told me some of the symptoms can cross over. Also, cold hands and feet ... could it be raynauds? I have that as part of the lupus.