Any one have an idea why im feeling this way?

Hello all I have a question. I have had itp a long long time but only ever had three episodes. My platelets are currently 181 so they are in perfect range. This week however I got a blood test and I decided to get the printed copy. I have started doing this as I'm always told things are fine but as I have written here before I have had a lot of other symptoms unrelated to itp itself. My doctor rang me and said my results were fine and all my immunology report came back fine. I had also gotten a copy before her phone call from the receptionist and I noted that my anti nuclear test ANA came back postive(very weak). Also neutrophils were slightly above normal range but she still told me everything was okay.

That is fine and fair enough BUT I have symptoms that make me worry. I do get the odd petechia, tiredness fatigue and its gotten to the point were I'm so anxious. As far as I'm concerned doesn't a positive ana not mean there is inflammation some where? Now my newest symptom is weird weak and sore knees and I feel kinda stiff in the mornings. It's not just annoying, it's causing me panic attacks now is I have no idea what it is. I still go out and try hard but I feel crap. I find that excercise and keeping walking helps and I feel better through out the day but early mornings are a nightmare. Also apparently I had a weak ana last year but never knew and I was told everything was fine. I don't know about earlier ones but because I have symptoms I'm getting so annoyed. I guess my question is does ITP cause other illnesses??The last episode I had with ITP lingered around 90k and I had a lot of symptoms like tiredness, weakness muscle pain, though I'm not sure was it joint pain. Also, what exactly does a weak positive mean? Sorry it's soo long but I'm so annoyed cos I want to just wake up with that energy I once had. It's distressing and to top it off I lost my dad a month ago but when I go to doctors I'm sure I see they think I'm just anxious cos of that. Thank u for taking time out to read

Ash:

A weakly positive ANA means nothing. It's nothing to worry about at all. ANA's are usually measured in titers. 1:20 and 1:40 are normal, although some doctors may say that 1:40 is a 'weak positive'. 1:80 is borderline. When it gets higher, that is when a doctor will begin to look for a possible cause, such as a connective tissue disorder. If your ANA were at that point, you would probably be referred to a Rheumatologist. People with ITP can have slightly elevated ANA's and not have anything wrong with them other than ITP. If the ANA gets to 1:320 or 1:640, that's when you'd need to begin to look for a possible cause if you have symptoms.

ITP does not cause other illnesses or turn into other illnesses. It can be a symptom of other disorders though, such as Lupus. If you are concerned about your symptoms, you should discuss them with your doctor and go from there. I don't know what treatments you have tried, but some of them (such as Prednisone), can cause those symptoms and will be present for quite a while after stopping the drug. If you had joint pain, you'd definitely know what it was. When I had it as a Lupus symptom, it hit my elbows at one point and I could barely bend or straighten my arms. It will almost always be symmetrical, meaning that it will be on both sides.

It's possible that you have some sort of Vitamin deficiency, so maybe suggest getting tested for that the next time you see your doctor. Having a deficiency could cause fatigue and can be a simple fix.

thanks for your repy, I guess my doctor thinks I'm just looking for something to be wrong. The thing is I'm not one to complain, I don't go to a doctor unless I feel like crap. That's what is frustrating. I know I should be glad that nothing has showed up but when I'm feeling fatigued like 90% of the time it's hard. I'm not a hypochondriac but I certainly feel like it and I hate when I'm told anxiety and by docs that i may be under more stress cos my dad died. I'm stressed cos i feel bad. I used never ever worry about itp even when I had a huge nosebleed in hospital, even when my platelets were at 6. I wasnt really that worried. Maybe because I didn't dwell on it, but then again I felt great, no lack of energy just petechia. When I feel like crap I think about it. I asked her to do tests for vitamins I thought but it doesn't seem to be on it. I guess I keep going with my ten percent when I feel better. hope you are good too sandi, I have read a lot of your posts. You are very knowledgeable in auto immune disorders. You should have a job as a researcher specifically in auto immune problems as you know so much. I will try not to dwell on the weak positive ana for now however cos I have symptoms that suggest another auto immune disease do I will keep an eye on it.

So sorry to hear about your dad.

You should not minimize the role that losing your father might play in how you are feeling. It is not about this being "all in your head" because of your sadness. Losing a parent causes emotional stress. Emotional stress takes a heavy physical toll on your body that lingers long after the emotional stress has subsided. One area of impact is on the hypothalamic-pituitary-adrenocortical axis, which is heavily involved in immune response. There is research that shows that even depression can be part of an immune response, (and depression and anxiety are closely related, so much so that they are often treated by the same medications).

To illustrate how this might work physically, let me give you my my pet theory, which involves some solid research by others as well as my own intuitive efforts. This theory has to do with glucocorticoid receptor resistance, where stress causes elevated cortisol levels, followed by cortisol receptors losing their responsiveness, sort of a stress rebound effect, perhaps. Almost every cell in your body has glucocorticoid receptors, and when they stop being receptive all kinds of bad things can happen.

It is important to note from this that the physical impact of emotional stress can occur after the stress itself is gone, and can linger long after.

Most of your symptoms COULD be explained by this phenomenon. Whether or not they are is way above my pay grade. Don't be surprised if you never get an answer.

Most of what one reads about recovering from emotional stress relates to the emotional aspect, and not how to recover physically. However, some research-based information is out there.

Googling "how to reverse glucocorticoid resistance" yields some interesting (though often highly technical) results. The article below from the Lancet indicates one might be helped by Vitamin D, antioxidants and chocolate (a source of theophylline, the darker the better)... in case you needed an excuse to eat more chocolate.

www.thelancet.com/journals/lancet/article/PIIS0140-6736%2809%2960326-3/abstract
Glucocorticoid resistance in inflammatory diseases
Prof Peter J Barnes, Prof Ian M Adcock PhD
Summary
Glucocorticoid resistance or insensitivity is a major barrier to the treatment of several common inflammatory diseases—including chronic obstructive pulmonary disease and acute respiratory distress syndrome; it is also an issue for some patients with asthma, rheumatoid arthritis, and inflammatory bowel disease. Several molecular mechanisms of glucocorticoid resistance have now been identified, including activation of mitogen-activated protein (MAP) kinase pathways by certain cytokines, excessive activation of the transcription factor activator protein 1, reduced histone deacetylase-2 (HDAC2) expression, raised macrophage migration inhibitory factor, and increased P-glycoprotein-mediated drug efflux. Patients with glucocorticoid resistance can be treated with alternative broad-spectrum anti-inflammatory treatments, such as calcineurin inhibitors and other immunomodulators, or novel anti-inflammatory treatments, such as inhibitors of phosphodiesterase 4 or nuclear factor κB, although these drugs are all likely to have major side-effects. An alternative treatment strategy is to reverse glucocorticoid resistance by blocking its underlying mechanisms. Some examples of this approach are inhibition of p38 MAP kinase, use of vitamin D to restore interleukin-10 response, activation of HDAC2 expression by use of theophylline, antioxidants, or phosphoinositide-3-kinase-δ inhibitors, and inhibition of macrophage migration inhibitory factor and P-glycoprotein.

..... and that's just the summary!

Intuitively, I would expect regular exercise (with emphasis on the "regular") to also be helpful.
And of course, all of those other things you are supposed to do to maintain general health!

I hope you start feeling better soon.

thank you for the reply rob and thank you for your condolences. I guess I do have stress and I guess cos my dads death was sudden it might have not helped anything. It's very interesting what you say about glucocorticoid receptors. I know stress can cause a lot of things but sometimes I feel stressed because of the symptoms. Maybe I have made it worse by th consistent worrying. I try to keep stress to a level but then then what with my bereavement it's maybe compacted it.

It's interesting you say that stress can linger afterwards which I would have never thought. I do feel like I may be under a constant wave of stress but I guess I just want to feel good. When I feel really stressed I get petichae on my arms it's funny how that happens.

I take vitamin d tablete as they were low last year, but I will def try the chocolate. Haha.
Thank you for the detailed reply, it's interesting and I have learned something new.

I understand how you feel and I have been in the same boat. I have had some of the same symptoms as you describe and have gone to many doctors about it. I went to a great rheumatologist and he tested me for many things. My ANA was weak positive too and he said no worries about that. He diagnosed fibromyalgia. This is a little bit of a vague diagnosis and to me I believe it can be caused by stress.

These are the things that have helped me a lot:


Sleep, very important and especially deep sleep. When you are stressed you do not get enough. I take elavil very low dose and that is a big help.

Exercise starting just a little bit and work up to more

Healthy foods so you get all your vitamins

I too have felt like I did not want to be a hypochondriac and also very anxious.

Sorry to hear about your dad. That can def be a factor in your not feeling well.

The problem with some autoimmune disorders is that they can begin slowly with vague symptoms. It's very difficult to know if something is going on or if stress or illness is the real factor. I'm using Lupus as an example because I've been through it. It did develop slowly with the first symptom being ITP. 8 years later, I began feeling flu-like for a few days every few weeks. Months after that, I started with fatigue and muscle pain that was pretty significant. About a year later, I started with joint pain that would move around every few weeks. All this time, the only thing I had in blood work was an elevated ANA of 1:320 and an elevated SED rate. None of that was enough for a diagnosis. By this time, I was being monitored by a Rheumatologist every 3 or 4 months. He kept telling me that I was fine. I knew I wasn't, but since nothing could be diagnosed, I was actually happy about it. I didn't want any diagnosis. Shortly after that, more testing turned up an elevated dsDNA and ACL antibodies, and those were the clinchers for the Lupus diagnosis.

My point is, if you really think something is wrong, keep pushing for yourself. It might take a long time to actually get a diagnosis if you're headed that way, but don't just let doctors brush you off.

Rob is right, stress does last a long time and it can be cumulative. My sister used to call stress a full time job, and it can be. Sometimes just managing it can be time consuming. It can also cause many symptoms, which is why it can be hard to figure out what is going on.

All you can do is try not to worry and do whatever you can to take care of yourself. Worrying that something is wrong with you will not change the situation.

Ash, I can't agree with Sandi more.
I always thought there was something not quite right with my daughter. 9 1/2 years, and 11 Drs/Specialists later, she was diagnosed with a very rare disease (1:250,000). During that time, so many people - doctors, friends & family doubted my husband and myself.

If you truly believe something is not right, follow the path for as long as you can.

I am also very saddened to hear of your fathers passing.

Jackie

Ash, I think it is important to note that both Sandi and Jacchab spoke of vague symptoms that concerned them, and 9 or 10 years later the symptoms became pronounced enough for them to receive a diagnosis. I agree with them that you should follow your intuition in pursuing this further. It may be possible for the doctors to find something, it may be that your body is responding to recent stress, or it may just be too early to tell.

If you are worried that you may have the early signs of an additional autoimmune disorder, such as SLE, ask yourself if there is treatment available where the benefits would outweigh the side effects. At this stage the answer might just be "no", in which case a diagnosis won't do you any good. Then it would make sense to wait and see if the symptoms get worse.

Whatever else you do, it is important to take the best care of yourself that you possibly can. As Sandi's sister said, stress can be a full time job. (Just don't let this job become too stressful!) If you take care of your emotional and physical health, you will undoubtedly benefit from it, and who knows, you may just ward off that unknown illness you are worried about.

Can't hurt!

I agree with the others that you should continue to pursue your issues with doctors until you can get to the bottom of it. In my earlier post I put in some things that helped me. Those were for stress relief and some of them may help you as you continue to consult a doctor or doctors.

thank you guys everyone for your views. it means a lot for you to answer. yes, i will keep pursuing every avenue. i will look also into getting vitamins tested. my doctor is lovely, she is nice but i get frustrated at her but she points out my bloodwork is fine, apart from that ana weak positive and slightly over neutrolites(whatever that is) and even then she says . i think she will be annoyed at the receptionist for handing out my lab results cos sometimes read into things more then i should. i do think, my personality is that im quite sensitve and i tend to think too much. for me knowledge can be a bad thing.

she ahs given me anti depressants, which im wary of taking as i have never taken one before but i feel like maybe i s hould. she said that they will help with what has happened and also that if say i have a fatigue syndrome it will help.i think i am repressing a little bit about what happened with dad. he was sucha good man and for him to be taken away so quickly shocked me but now i think at times like it wasnt real. i had no time to prepare or speak to him one last time.

i guess i believe something is going on. i was never so anxious and it seemed to hit me when i got a flu last year and my platelets shot down and i will continue on and get tested for vitamin deficiencies. i feel like the stress filters are turned off and i cannot stop worrying about every little thing. i will keep in contact with my doc and see how it goes.i will have to do some meditation to relieve my anxiety.
on the upside my platelets have steadied themselves well after last year. i am greatful for that. i do see petichiae sometimes so i thank god for that.

ashybobashy wrote: thank you guys everyone for your views. it means a lot for you to answer. yes, i will keep pursuing every avenue. i will look also into getting vitamins tested. my doctor is lovely, she is nice but i get frustrated at her but she points out my bloodwork is fine, apart from that ana weak positive and slightly over neutrolites(whatever that is) and even then she says . i think she will be annoyed at the receptionist for handing out my lab results cos sometimes read into things more then i should. i do think, my personality is that im quite sensitve and i tend to think too much. for me knowledge can be a bad thing.

she ahs given me anti depressants, which im wary of taking as i have never taken one before but i feel like maybe i s hould. she said that they will help with what has happened and also that if say i have a fatigue syndrome it will help.i think i am repressing a little bit about what happened with dad. he was sucha good man and for him to be taken away so quickly shocked me but now i think at times like it wasnt real. i had no time to prepare or speak to him one last time.

i guess i believe something is going on. i was never so anxious and it seemed to hit me when i got a flu last year and my platelets shot down and i will continue on and get tested for vitamin deficiencies. i feel like the stress filters are turned off and i cannot stop worrying about every little thing. i will keep in contact with my doc and see how it goes.i will have to do some meditation to relieve my anxiety.
on the upside my platelets have steadied themselves well after last year. i am greatful for that. i do see petichiae sometimes so i thank god for that.

i meant thank god they are stable lol

Are you sleeping okay?

Ash,

I have the same marker on the ANA that you have. My doc said probably arthritis is lurking. I know where it is lurking, my knees, my shoulders, my back, and most other places it can lurk! LOL It is ok! What I do is very inexpensive, I whine! Sandi, Rob, and the others have you excellent advice. You should be your own advocate. Press for your own cause and health. You know you better than anyone else. Keep your notes and records and move forward.

Keep us all up to date!

Jeffrey

Rob16 wrote: Are you sleeping okay?

NO! My wife snores like a freight train!

Ha ha, Jeffrey! Actually, I can't live without my cpap. Even use it in the dentist chair, but thAT'S A long story.

Ashy, the reason I asked about sleep is that if you are really anxious and worrying that might be getting in the way of your sleep, which can contribute to fibromyalgia, which could (maybe!) explain some of your aches and pains... just a thought. Since you are in Great Britain, hopefully you will be reading this after a good night's sleep!

Ha ha, I'm actually in Ireland. I get to sleep pretty well, I do wake up unrefreshed and stiff. It depends it changes really. But I stiff feel like I could sleep another few hours. Once I start moving I get better. Actually, once I'm up walking its fine but I get a sick feeling on public transport and being in shops. It's like the only way I can describe like I'm on high alert most of the time. Jeffrey, I get sort of weird achy pains in my knees, I find them odd. Oh and i whine too, haha.I also get this weird feeling of brain fog.

The worst thing for me is feeling weak and sick. See, smetimes I wake up feeling like iv run a marathon and if I do too much to talk to much it's like I'm mentally exhausted and physically.

To be honest ove the years I have gotten little odd things happen me. First I'd get an episode of brain fog, little aches but over longer periods like every two years. i reckoned in was down or something.

See my family have lots of immune problems, each of the women except me have thyroid problems, then we have chrons disease, episodic itp(me), arthritis, etc. I do know that I tend to let it get to me. I know that a positive attitude is going to help me also as I see the effect a positive attitudes can do for your body. Guess I'm gonna try to new fit as well. Gosh, I never liked being fit though. Although I'm slim im so out of shape so il need to join a gym....sigh.

Rob, to be fair I thought fibro but then I don't have much pain, and I thought that was a disease that caused pain. Like I get stiffness must not really too much pain a little muscle pain

Yes, for a diagnosis of fibromyalgia you have to have some muscle pain and there are trigger points. Poor sleep is a big component of it. Chronic fatigue syndrome can have some of the symptoms you describe. People with thyroid issues can have those too. Hope you don't get discouraged and continue to pursue what is causing your symptoms.

Ash,

I hurt in all my joints and my back. I just kind of move through it, like you do in the morning. I try to mentally make my body compensate for how it really is compared to how I want it to be. Some days it works betters than others for me! LOL I too get tired. That was my first hint a couple of years back that something was not quite right. It just kind of sneaked up on me. Anyway, don't stress yourself over it, if you can do that! When I am active I just feel better. You seem to have a lot of the symptoms that I have.

Rest up and go and do something fun, then tell us about it!

Jeffrey