Does anyone ever feel like theyre a hypochondriac?

Does anyone ever feel like they are a hypochondriac because of their ITP??

so we went on our 1st family vaca to the beach. and i come home with a bumpy rash on my hands/wrists and inner knees & petechiea - nose bleeds on the ride home- headache
(and i always get leg pains- especially at night- i run up&down steps to relieve the nagging pains then as soon as i lay back down its unbarable) (also have been having problems with my vision past few months- had to get my contacts changed twice and still cant see right)

made me think of the symptoms i have (dr never says much about my leg pains and fatique) But im bringing all these points back up to him again --- makes me wonder if all this is related or just my luck to have a crappy vaca or maybe i have have sun poisoning

my platelets were 80 2weeks ago i get them checked again and have hemo appt tuesday (and prob another round of IVIg).

Before I was diagnosed with ITP I had been having a bunch of weird symptoms. For example, a finger or a toe would be painful for a week and then get better. I had a rash on the palms of my hands. I lost a bunch of hair and had a huge bald spot. Finally they did a blood test and I had like 20k platelets.

I think sometimes other people don't understand that we are really sick and have these weird things but I know they are real.
Erica

Sometimes I think that doctors are to blame for this type of feeling, but don't ever give up on you. If you feel some thing is wrong more than likely it is.

Before ITP my health was great, never sick not even a cold or flu, since ITP dx I have had non stop immune system problems, thyroid, endometriosis, and rhum arthritis. I think that once your immune system gets out of wack things will go wrong.

So brittany don't feel as though you are a hypochrondriac, you are just a person like the rest of us that wishes people could see life like we do. We have to make decisions on treatments and they all have an ugly side, no treatments are easy they all have side effects.

I have recently had to push the pain thing at my doctor for three months and sometimes I felt like giving up but I knew it was real, I knew I was in pain and only after really pushing to go to a rheumatologist did they find out about rheumatoid arthritis, so stay strong and find a way to make your Doctor listen to you.
I totally agree with Erica that people don't understand and they don't realize that in a heartbeat they too could be living a life with a auto-immune problem and it is not much fun.

how do they diagnose rheum arthritits? also my pain starts in my hips (like i have rubber bands around the top of each leg and no circulation is getting to them- so my hips & knees ache and the rest of my legs tingle) thats how i describe it. I am only 24 so i feel too young for arthtitis but i act like an old women. i also fractured my back last yr, which they said id never know after it healed. but it hurts alot too--- so more old lady like lol

Yes! I feel like that all the time. I get all kinds of stuff that doesnt make sense, especially weird tingling sensations all over my body and bone/muscle pain. I feel like the prednisone treatments make it all worse. I try not to talk about it that much with my family or friends, except for a couple close friends. My arms and legs are all bruised up, I look like a mess and cant sleep. I think that generally doctors dont realize the toll that this takes on our general well being.

I have found there there can be different reasons for weird symptoms. I also had the leg problems at night and couldn't sleep for two years. I finally discovered that my ferritin was low and began treating with iron. Within two weeks, it was gone.

"Low iron reserves are a known risk factor Restless Leg Syndrome, as blood iron levels below
45-50ng/mL have been tied to more severe expressions of RLS. In fact, iron levels are so
important to assessing RLS, that it is now common for doctors to test blood ferritin levels
when first assessing Restless Leg Syndrome. Celiac disease is a common genetic disorder of
the immune system that can cause iron deficiency."

www.rls.org/Document.Doc?id=1782

I had discussed the problem numerous times with a few of my doctors, but they were not concerned with finding a cause or helping the problem. I eventually solved it myself. They were not interested in treating the low ferritin because it was still in low-normal range. If you read about it though, symptoms can appear at levels below 50 (mine was 20).

Most of the weird symptoms that people have are not ITP-related and there are reasons, you just have to keep trying to find it. I push constantly for blood work to check different blood levels and am surprised at how often I find out that something is low.

I was just at the beach and have weird bumps on my knees, but I'm chalking that up to sand fleas. I've had it before; they will go away in a few days. Both my sister and husband have had their entire bodies covered in a bumpy rash at the beach before. We know that my sister has Discoid Lupus and my husband has chronic hives, but we don't know why the sun caused the rash that particular time and not other times.

My point is: Most of these things are not ITP-related, but once the immune system is affected, other problems can crop up that no one thinks to look at. Start researching and ask questions.

Sandi,
Look up PMLE for the itchy sun rash.
Erica

Yes! Lately especially I have been feeling like that. It seems there are more and more things that I notice that aren't the same as they used to be and I feel stupid for mentioning it to the doc/nurse, so I don't! Then I eventually do and they just blow it off with a I dunno answer. Like the foot thing. I can remember in March or so of 2010 I mentioned to my nurse about the feeling of a piece of fabric or something on my foot. She just said..hmmmmmm and that was it. Little did I know that's a sign of Neuropathy! So this time at the Neurologist I metnion everything I can think of and the customary I dunno answers. We'll see. I'm going to start keeping a journal type thing. Ok, not I sound like a hypochondriac!

Erica - thanks for that. I'm not sure if that is what it was - it didn't look like the same thing they both had. Their bumps were skin colored and not clumped, definitely raised. You'd think I'd be the one with the skin reaction since I have Lupus, but have never had any rashes from the sun (yet).

Brittany,
Very small children get RA so age really not the thing with RA, it is auto immune so can effect anyone.
The dx is not always easy and you have to really follow up with your Doctor, there are blood test that can be done but all my test came back in normal ranges so my GP tried all different pain relief from paracetamol to morphine and none worked. I think the numbers are something like 20% of people have RA of these 10% don't test positive at first, some never do.

So after a long battle with my Dr and refusing small dose of pred with no dx he finally sent me to a rheum and he is great, he also tried a number of things but he also listened to what I was saying about the pain. The pain was worst when resting, if I was moving it was ok, still there but not so bad. Heat didn't relieve it the only time I had relief was when I was in the pool I think it was the that while in the water there is no weight on your body. I also had swollen joints and the pain is usually down both sides of your body, feet, arms, hips, back, sholders I often would just sit and cry with pain, it was awful.

Anyway he started me on methotrexate and after about three weeks pain is gone. I don't think he is 100% that it is RA but the only other thing he thinks is early signs of Lupus so we are watching this carefully.
If I can help just send me a message and we can email. Please follow this up because both RA and Lupus can effect a lot of things. Good luck

I would never receive ivig for 80. Mine has to be under 10 at the best

Yes I am beginning to feel the tiredness and feel like one does with a virus of course heamo's happily blamed a virus rather than the symptom being that of ITP.

Sometimes we know more and they know we do but them being the professionals want to look their best in helping us so am willing to play that ball game rather than argue though they are happy to accept swollen throat being purely ITP sign! Its invisible to the docs but it is a recognised immune symptom

When my platelet count goes much lower than 100 I seem to have the leg cramps. I hav tried sports drinks and was told about drinking pickle juice and it seems to help. I had wondered if others has the same problem. During my low of 27 I could hardly take steps without really pushing. When I am around 150 I feel really good.

thanks everyone for your thoughts and concerns
milly- thanks for sharing ur experience. I try stretching and some exercise (my husband isnt the most compassionate person all the time-- he tells me I need to exercise more and i dont have a high tolerance for pain) He just doesnt seem to understand Im in the same shape ive been in my whole life and have nly felt these kinds of pains since my diagnosis with itp... so its frustrating

riahhna- 80 was my last platelet count. i dont get me IVIg till they drop somewhere below or around 30. this is new to me ive been doing it since about january. the dr. has me get them checked every 2wks cuz they seem to drop kinda quickly (200's-30's in approx 2months) so when they are 30s-40s he just says lets do IVIg now cause 2wks later they could drop alot more...... Does this seem normal to everyone???

im sorry i meant rhiannon **

Brittany, It is probably hard for other people and husbands to understand what all this is like, taking meds, having treatments (which I think the meds are the worst part of this)

I have found that as time goes on people find it hard to believe that sometimes you just don't feel right and they tend to have a hard time believing that you have a problem that Drs cant cure. I have had people say to me "they can cure cancer I cant believe there is no cure for me".
Pretty flipant statement I think, but anyway all you can do is the best you can do, be proud of yourself that you are doing as much as you can and try to educate those around you.