Pain and ITP

Hi my name is Stephanie and I am 22 years old. In December 2014, I was diagnosed with ITP. At the time, I had 4,000 platelets. But for the past month or two, my doctor has been having me come in every two weeks to check my platelets, and recently they have been between 45,000-52,000, so he thinks that is my plateau.

About a month ago, (ironically, a week before we left for the ITP conference in Tennessee), I started waking up everyday with pain. It started off where I would wake up and it would feel like I sprained my wrist or my ankle while I was sleeping. Or I would wake up and I would feel sore on one side. And the pain was inconsistent; some days, it would be unbearable and other days it would be manageable. And it would usually go away completely when I took Tylenol and then sometimes come back slightly before I went to bed, but it was always present when I woke up. I went to my doctor the day before we left for Tennessee, and he asked if I had started any new exercises. I said I had started doing a different kind of squats, and he said that could be it. I mentioned that my fingers feel tingly a lot, and he said that usually only happens to people who have platelets in the millions, which is rare, he says. So I dismissed it and figured it was from my new way of doing squats.

On the trip to Tennessee, I didn't do any squats, and the pain was still there every single day. Sometimes it was hard to get out of bed, or fall asleep, because the pain was so terrible.

It's been a month since I started having this pain, and now it's starting to get in the way of everyday things. The pain will go away slightly if I take Tylenol, but it's always there. Now I wake up every morning with something I describe as insane soreness in my upper arms and in my legs, and my fingers and wrists hurt so much. Sometimes my fingers hurt so much that it's even hard for me to take my socks off. At work, I have to lift a lot of heavy boxes and gather stock, and I used to be able to do this without any problems, but now I can barely break down a box because my fingers hurt so much. I was thinking that maybe the soreness is coming from having to suddenly lift boxes at work, but that's why I am posting here to see if anyone else can relate. Sometimes too, the pain will wake me up in the middle of the night and then I can't fall back asleep because I can't get into a position that is pain-free.

At the conference, someone said that ITP is a branch of Lupus, and I guess I just want to know if anyone else has any similar pain? My next doctors appointment is in a week so hopefully then I'll find out what's going on.

Thank you.

Welcome to the PSDA. My situation is similar to yours insofar as I have chronic pain and low platelet counts. It's very unlikely to be related to ITP or other autoimmune disorders such as lupus.

Have you had a general physical including blood work recently? There are a variety of common problems, including for instance low vitamin D, low vitamin B12, low iron, or other micronutrients that can cause the kinds of pain, soreness, numbness, and tingling you're describing. Further, problems with nerves in the neck can cause numbness, tingling, and pain in the hands, forearms, and upper arms (this is called cervical radiculopathy). I have a combination of the above, none of which is at present thought to be related to my autoimmune troubles.

There are other causes of the kinds of pain you're describing. Your doctor will likely want to know what you've been eating and drinking, if you've been ill recently, if you've started or stopped taking any medication, if you've gained or lost a significant amount of weight, etc. All that information combined with the results of appropriate testing should clarify what is going on and suggest a treatment regimen.

I hope you can resolve this issue soon. And I hope your platelet count stays stable.

I would ask for a referral to a rheumatologist. Or just make an appointment with one if you don't need a referral. That depends on where in the world you live.

ITP can be a symptom of Lupus. I agree with Ann. You should see a Rheumatogist. The symptoms you are describing could be a connective tissue disorder. I have Lupus and my symptoms began much like you are describing.

It could be nothing, but it's best to check it out.

Have you been on steroids lately?

I agree with the idea of seeing a rheumatologist. I didn't mention it because the rheumatologists I've seen were a bit prickly with patients who didn't show up with a referral from a primary care physician and preliminary blood work already done. I actually got berated at one rheumatologist because I didn't have what they considered sufficiently recent blood work for their purposes.

But without knowing where you are, what kind of health insurance or related health care coverage you have, and what you've already had done, I can't say if you can go straight to a rheumatologist or should work through your PCP first. I hope you can get all that sorted quickly.

Aoi - Thank you for your advice! No I have not done a general physical lately but will look into that. I will also ask my doctor next week if he can refer me to a rheumatologist I take B12 and Iron vitamins. I used to take them everyday but in December when I was put on prednisone for a month, it made me anxious to take other pills (I was suddenly afraid of choking - probably anxiety caused by the prednisone) so now I have to remember to take the vitamins. But those vitamins are among a few others I take also when I remember to. But I will ask about that as well. Thank you and I hope you feel better

Sandi - Yeah I heard a few people at the conference I went to talk about how they have Lupus and ITP, so at first I just assumed it was that, but now I want to KNOW if it's that or not. My boyfriend thinks it could be fibromyalgia or rheumatoid arthritis.... but I'll ask my doctor when I see him what he thinks. And no I haven't been on steroids lately; they had me stop taking the prednisone at the end of January.

Ann - thanks!! I will ask my doctor

My first real Lupus symptom was sporadic pain that moved around. You need to have an ANA test done, that is usually the first step. Usually with Lupus or other disorders like it, the sooner you treat the better off you are. You also have to be persistent. Sometimes symptoms show before the labs show anything definitive, so don't allow doctors to blow you off.

Agree - rheumatologist asap. Sounds like lupus pain. I had similar roving pains.
Erica

Sandi - Thank you! I see my doctor in a few days and will tell him about the pain and suggest that maybe I should have the ANA test done before he can dismiss the pain like he did a month ago.

Erica - Thanks! Will do further research

Let us know what the results are. Don't let your doctor dismiss the pain, even if the blood work is negative. I went through that for years before underlying deficiencies and such were found. I hope your docs are better than mine were.

Thank you Aoi, I will. I am sorry you had to go through that I have already switched doctors once because my first doctor was dismissive of anything I said about anything. But the current doctor I am seeing is nice and listens to me most of the time! However, he did somewhat dismiss me (at least, I wasn't too thrilled with his response) when I told him (for the second time) about my pain. He said it has nothing to do with ITP or lupus, and he said lupus is not pain but is only swelling and rashes on the face... And then he told me to go see my primary care doctor. So, I made an appointment with my primary care doctor but unfortunately he is not available until the beginning of October. It may be in all in my head, but I do think the pain is getting worse But I'll definitely post my progress

Lupus IS pain. It is widespread inflammation that can occur in any part of the body. I didn't have any swelling until six years after diagnosis. I rarely ever have the facial rash and if I do, it is subtle.

The first Rheumatologist I ever saw dismissed me without doing any blood work. He looked at me, said I was fine and sent me on my way. I saw my Hemo the same day and told him. He ordered an ANA which was elevated and referred me to another Rheumatologist. That one monitored me for a year and my labs slowly began to meet Lupus criteria. So many doctors, even Rheumatologists, do not seem to understand what Lupus can do and how it can develop. Anything can be a symptom and it can affect any body part(s). That is a shame because the sooner it's treated, the better off the patient will be.

Oh wow Sandi I am so sorry it took them so long to finally treat you But I am glad that they finally did! Thank God for nice doctors who actually care about us.

I had my rheumatology appointment today. Thankfully, the doctor was soooo nice and listened to everything I said. She seemed annoyed that my doctor had dismissed my pain when I had mentioned it to him. And she also told me that, as far as we know currently, ITP IS an autoimmune disorder meaning I COULD develop lupus etc.

She pressed on the 18 pressure points, I think she called it, and only 3 of the 18 hurt slightly (good sign). She also felt my hands and arms to check for swelling and couldn't find any. She ordered me a ton of tests (pictured below) and I did that in the lab. The lady drawing blood thankfully was able to condense it from 11 to 9 tubes! That was not fun; still feeling a little dizzy.



((I am so sorry the photo is sideways - I have no idea how to fix that))

Ha, I get that sort of blood work every 3-4 months. You get used to it.

Looks like she ordered all of the right tests. Perfect. Good luck with the results and please let me know. The Double stranded DNA and Anti-Smith (Sm) are the big ones. The ANA, SED and C3 and C4 are good indicators of autoimmune dysfunction but do not clinch a diagnosis. If they are off along with the dsDNA or Sm, that usually does it.

Update:

The test results came back saying that I have three of the eleven criteria for lupus, so my rheumatologist is calling it "undifferentiated connective tissue disease" which is basically lupus. She didn't want to diagnosis me as lupus because she is hoping this will turn around and disappear, and she also said having such a diagnosis will make life insurance go up and it will be hard to get rid of the diagnosis.

She said my three criteria are the double stranded DNA, Smith, and the ITP. She is not quite sure yet if the pain I have been having since July is another criteria has I have not had any noticeable swelling with the pain (the other day I noticed my finger was swollen and hurt a lot but that is the first time I have ever noticed any swelling).

She put me on plaquenil, which thankfully has not hurt me in any way. Yesterday I checked my platelets again and they are at a number we haven't seen since February, so that was good news! I know it was not the plaquenil because I know that takes 2-3 months to have affect, but my doctor was excited the platelets had gone up.

Some days the pain is so bad that it's really difficult to do normal things, such as driving. I put my two weeks in at work and my last day is Sunday. I work at a movie theatre so it has been increasing in difficulty since July. I plan to take a month or so break so I can focus on my health and getting through school.

I'm so sorry, Stephanie. I had a feeling that's what it was. I think you do meet the criteria but it's good that she is holding back the diagnosis for now. She's right, it will affect life insurance. She is treating you regardless and that is good. Hopefully you can get things under control, soon. If not, call the Rheumatlogist and see what you can take for the pain. You don't have to live like that. I take several meds that help, but nothing takes it away completely. Everyone is different.

I have not had low counts since I started Plaquenil, and some articles have implied that treating Lupus can also help ITP since ITP is a symptom of Lupus. I hope that happens for you too. One less thing.

We have the Lupus section down below so feel free to join us. It isn't a big group but there are a few of us.

I have had ITP for over 12 years. Pain, fatigue, malaise has always been a problem for me. I started using Opioid pain meds. almost immediately after I was diagnosed and recently the doctors have insisted I begin weaning off of them. They are the only thing that have helped me but I suggest you try other pain management therapies. The process of weaning off of Opioids is extremely difficult and the stigma that has developed recently for the use of Opioids is something you want to avoid. I hope you have better luck with your situation and if you find an effective way to manage your pain I would like to hear from you. I hope this helps in some way, I find that just knowing others experiences helps me to understand my own issues better. Chuck S.

Are they substituting something for the Opioids? I take them too and couldn't imagine having to stop. I'm not sure what you mean about the stigma....I get that they are connected to drug abusers but I don't consider myself in that category and I don't tell many people. I'm not all that crazy about the occasional drug tests, but I understand the reason and have nothing to hide. I once had a pain management doctor try to prescribe Morphine. I refused that.

Sandi - Thank you so much. So far, I have been taking Tylenol. Ever since I was a child, I have had headaches. I usually have some idea for why the headache is occurring, but I almost always have one. They range from what I call an "annoying headache," which is when it is there but I am not in pain, to what I call a "blinding headache," which is when I can't focus on anything, see clearly, and it doesn't go away no matter what. So, since a young age, I was taking Aleve multiple times a day, and when I was diagnosed with ITP, they told me to stop taking Aleve and start taking Tylenol (the only bad thing anyone had ever told me about taking Aleve was it could burn in a hole in my stomach if I didn't eat while I took it, so I didn't think it would harm me, but my first doctor thought it did). I have been trying to ignore my headaches and not take Tylenol for them, but I still end up taking it every day for the pain. So I really hope I can find something else as I don't want to end up with other issues from Tylenol... or become used to it and then it doesn't help me anymore haha since it seems to really help me with the pain, but like you said, nothing takes it away for good

I have had two Platelet checks since i started the Plaquenil, and I know that the plaquenil is not supposed to noticeably work for 2-3 months, but my platelets have gone up on both those checks, so hopefully it does help me with ITP as well. I'm glad it helped you! My rheumatologist also told me the plaquenil could help with the ITP, but she didn't seem convinced it would help too much, so if the plaquenil helped with the platelets already, then that is certainly a blessing and one less thing!

Thanks Sandi! I'll check out the Lupus section I am glad you refused the Morphine! As with anything, our bodies can become dependent on medications, and I think Morphine would not be the best treatment to become dependent on!


Chassigg2015 - I agree that knowing others' experiences helps me as well. My rheumatologist told me to try to stay away from forums and blogs, but I think that it's a great help for me - if I go straight to the internet, I won't learn anything about what people have actually been through, just a general idea of what "could" happen. So yeah I am extremely grateful for these pdsa forums - I trust you all

I am very sorry your doctor wants you to stop using the Opioid. I have not heard of that medication, but from what you and Sandi have said, it sounds like it's the one medication that helps the most. I have a feeling Tylenol will not help you as much as the Opioid does, but it does at least help a little.

My mom went to a Lupus conference last week and told me she learned stretching helps a lot - it sounds ridiculous because of the pain but I do try to stretch and that helps a little. As with anything, it probably will help in the long run. But I hope you find something else if you really have to stop taking the Opioid, and I hope the weaning off process won't be too difficult

About two weeks ago, I started drinking milk every day. I read, too, that milk is very good for Lupus patients has it helps with bones. I don't know if it is coincidence, the milk, the plaquenil, or the Tylenol, but I do feel a little better since I started drinking milk again.....

Actually, milk has been found to not help bones much at all. Vitamin D and Magnesium do. Magnesium is also very good for muscle pain, but you have to get the right kind. Stretching will help, both short term and long term.

Opioids include Vicodin, which is what I use. It's called Norco which is a high dose Hydrocodone mixed with Tylenol, I've taken it for years. I also take high dose Naproxen (Aleve) and have for 10 years. I do have pretty bad reflux but so far, no real stomach issues. I'm expecting that some day though because I've also been on Prednisone for the last 10 years.

You should try to find out the reasons for the headaches. Sometimes they can be caused by something called APS which is common with both ITP and Lupus. It wouldn't hurt to ask to be tested.

Hmm well if the milk doesn't helps with bones, then hopefully it actually does help with teeth because I have really sensitive teeth and it'd be nice if they were a little stronger.

Wow I am sorry you have been on Prednisone for 10 years I was on it for a little over a month and had a terrible time, and hope to never have to go back to it. Does it get better? The side effects? Do you get used to them? I was all over the place when I was on prednisone.

We tried to find out when I was a kid, and at that time we learned it was sinus related and hereditary. I am also sensitive to the weather - when it is 100 and bright/sunny outside, but then 60 and overcast and rainy the next day, or vice versa, I have a headache that doesn't go away.

A few months ago, I thought maybe they were due to stress, and I started trying to manage the stress better and it seemed to help because I have far less headaches than I used to. But I will look into the APS! Thank you!!

Stress can cause headaches big time. So does using the computer too much. It does damage to neck muscles and cervical disks. I've been dealing with that since 1996.

Sensodyne toothpaste can help sensitive teeth. It's the only kind I use. Abrasive toothpastes with baking soda can cause sensitive teeth.

I am used to the side effects of Prednisone. It's 15 mg's a day, so not too high. I am much better with it than without it at this point.

My dentist told me to use sensodyne a few years ago because I apparently had gingivitis, and I have been using it since then.

Oh I am so glad you are used to it and not taking a high dose!

Did you sat that you were on Prednisone recently? That can cause tooth sensitivity. I think there is also a gel that you can buy that works. I used it a long time ago.

I was on prednisone from the middle of December 2014 to the end of January 2015. Thats interesting that prednisone can cause tooth sensitivity - I didnt know that! But I have always had sensitive teeth (the front ones especially). It's not a huge problem but I do have a gel that I use sometimes when my teeth are really bothering me (and it works great)! thanks!

Well, I can't tell you anything, girl! You already know! Maybe I can help with the next thing....

Hahaha no!! You've helped so much, thank you!

Sandi - what do you know about essential/natural oils in regards to helping with pain? My mom is very interested in trying to make me use some

Funny you should ask that. I've only recently started buying Essential Oils. I bought one called Muscle Relief by Edens Gardens on Amazon. It smells sort of like peppermint and it does feel nice when you use it, kind of like a mild BenGay sort of thing. It does work to relax muscles. It feels cool and tingly.

The other ones I bought purely for aroma therapy purposes. I have Vanilla, Cinnamon Bark and Patchouli. They are relaxing if you like those scents. I am one who really uses scents for relaxation, especially candles and lotions.

Other than that, I don't know much about them. There is a lot to learn. There are some FB pages with people who are pretty knowledgeable about the oils. You'd be better off asking them for info.

Oooh okay thank you! I'll let my mom know :lol: