ITP Fatigue, back and joint pain

I was diagnosed with ITP in 2009, shortly after having my son who was A- blood type and I am AB+. I was given a shot of Rhogam and I feel that my ITP was associated to either my pregnancy with a + baby or the shot itself. My levels maintained at 100k with minimal bruising and bleed issues, and some pupura marks on the sides of my legs. Then I got pregnant again in 2010 and had an unexplained miscarriage. In 2011 I was pregnant again and I had a hard time keeping him, my hormone levels kept dropping but thankfully with help from my OB I had another beautiful healthy strong boy in 2012. Carrying him however was brutal. It felt like my body and immune system was always fighting to keep us both alive. At one point I my blood dropped to 20k. Has anyone had issues with their ITP levels dropping while pregnant? Once I delivered my son I went back to 100k but it was a scary ordeal. Recently though my levels are dropping again, and this time it's changed. I started with intense back pain a few months ago and ended up in the ER. I thought it was my kidney's or liver but both checked out fine. The pain gets worse if I am dehydrated, if I have a few glasses or wine or even if I am intimate with my husband. None of it makes sense. Now I have this debilitating exhaustion with nose bleeds. Some doctors say it's viral, others say it's musculoskeletal pains, no one has answers. I go for MRI after MRI, CT scan after CT scan, blood test after blood test and no answers. All they know is that my platelets are dropping and don't know why. My spleen is perfectly healthy. Steroids do help but only temporarily. Is there anything I can take or do to help my levels back up. I am extremely weak, tired and now my joints have been so achy as well. I'm a 37 years old. Is there anything I can do about the fatigue and joint pains, and does anyone have this unexplained back pain?

12 Replies

  • Was diagnosed in 1995 when I was pregnant. Platelet count was between 60-80k for years, but now runs at between 30-50, and no reason why. I get very tired, and have good and bad days.

    I don't drink much alcohol, as it depresses my platelet count, but I don't bruise much, and rarely get unexpected bleeding, normally in my mouth when it does happen.

    I get by without medication unless my count is really low, at about 15. I've learned to live with it, which is hard, and to take advantage of the good days.

    I have back pain, but it is due to disc damage. Have you seen an osteopath about it? Could the cause of yours be a gynae problem, especially as you mention it happens during sex? Perhaps that's another avenue to check as well, as not everything is ITP related.

    There is a website (PDSA), platelet disorders support association, which is a U.S. one, but very good, that is worth looking at, plus the ITP support association which is the British one. You may find help there as well. The fatigue is recognised now as part and parcel of ITP, and you have to deal with it as best you can.

    Might be worth seeing a rheumatologist, and getting checked for SLE perhaps, as that combines low platelets with joint pains.

    All the advice I've had with ITP boils down to live with it. There are drugs you can have, but others on here take them and know more about them. You can do some research on them and see your doc and ask for their opinion.

    Platelets can be destroyed in the liver as well as the spleen, and there is a test to find out which it is.

    Good luck, it is hard I know, especially if you have paid work as well, but you have to learn to pace yourself.

  • I've heard many success stories about having the spleen removed and having normal platelet counts. I have SLE - and the ITP didn't kick in until a few years later. My hematologist told me having my spleen removed would not work for me - but I have a few friends that did, and they are fine now. My platelets dropped once to 32, and my doctor tried Dexamethosone, but the result was temporary, and the pain from he 10 pills a day was not worth it. As of yesterday, they were 65, and I an surely live with that!!! For me - that's high! Talk to your doc about a splenectomy if it continues. Your condition may just be temporary and he may suggest just watching and waiting...but stay on top of it.

  • Thank you for the advice and for looking at my post. I really appreciate it very much.

  • That's what and why we are all here - to support each other and let you know we understand and can feel what you feel.

  • Thank you Scaryteacher, I appreciate your advice. The best I have received so far! I will continue on these posts, it does give such peace of mind going right to the source: people who actually have ITP! Thank you again!

  • Bebtaz,

    Congratulations on having two wonderful children! Even though I'm sure they bring you immeasurable joy, it's terribly hard to be a decent parent when you are fatigued.

    You might ask your doctor about Rituxan. I think its original use was to help alleviate joint pain, though I was given it for my ITP. I'm not sure it will help the fatigue though; it exacerbated mine, which happens to slightly more than a third of the patients who take it. The fatigue is supposed to pass; mine hasn't and continues to worsen even though it's been two years since I had the infusions. On the other hand, my platelets have remained stable over 100K during that time.

    I don't find that I am able to accept the fatigue and learn to live with it. It gets too much in the way of my being able to earn a living, something that is becoming more and more urgent that I be able to do. I continue to seek answers and hope for a solution or amelioration from my ever-increasing pool of doctors.

    I think scary teacher's suggestion that you talk with your gynecologist about your pain is spot on. Some of the pain may indeed be caused by pregnancy and giving birth. Those experiences and the ITP may be working together to make you so tired and achy. It can be difficult to shift out what's causing what if there are multiple issues swirling around.

    The bone-marrow biopsy I had done to diagnose my disorder left me with back pains; I have found that physical therapy has, slowly, helped me quite a bit. You might want to see if you can find a physiatrist to help you sort out possible causes for your pain and to recommend a good PT.

    I hope this helps, and that you let us know how you come along.

  • Thank you SoporRose! Yes my 2 boys keep me grounded, and it is so hard to keep pushing in our crazy busy lives with children when you can barely move some days. This is new to me so I am hoping it will pass if I give myself time to rest, as hard as it may be most days. I'm thinking about starting on homeopathy to see if it helps.

    Thank you for all of your advice!

  • Please tell us if you find something that helps. I realize that we're all different, but it's worth knowing what others have found ameliorative. You may find that a lot of your fatigue goes away when your youngest child starts college … : )

  • Thank you everyone for your kind words and advice. It is nice to know that I am not alone. I maintain my platelet counts between 100k and 50k. The fatigue is new, along with some of the pains, but I will have to live life the best I can. I would prefer not take any medications until I have no choice. All my other tests keep coming back normal including my GYN so at least I have some peace of mind knowing nothing else is going on right now.

  • I was working 60 hour weeks as a teacher, with my husband posted overseas, and our son at home with me. I resigned and moved abroad to join my husband. Took me 18 months to sleep normally and destress. Stress can also affect the platelet count.

    I live in Belgium, have just come back from a week in Bavaria, and am off to Oman for a fortnight from tomorrow. Following that, it is the drive back to UK from Belgium to drop my Mum home to Devon, then back to Belgium via London to pick up our son who is now at university. I will be really tired after all that, but by building in rest days,and breaking the journey at a hotel at night, it is doable.

    You will learn what you can and can't do; when having a freezer dinner doesn't matter (one you'd made earlier of course), and that sometimes the need to sleep trumps most things. I try to build in time in the bath, and, it does get easier as your kids get older. My son now looks at me, makes me a cuppa, and sends me off for a nap. He has been known to produce a meal as well.

    It isn't easy, but learning to listen to what your body is saying and acting on it helps. Working with it rather than against the ITP helped me. The problem is that it is not a visible disease, no pustules or running sores, so people don't realise why you are feeling so crap.

    I think really I am saying be kind to yourself, and cut yourself some slack. Some days I forget I have this, and others I am only too aware of it. I miss having energy, but it could be so much worse, and I could have something truly life limiting, as opposed to having something which means I have a valid excuse for a snooze and an excuse not to play ladies rugger.

  • ScaryTeacher writes "The problem is that it is not a visible disease, no pustules or running sores, so people don't realise why you are feeling so crap."

    I think that is part of the problem I have. Don't get me wrong — I'm not wishing for worse. But even my husband doesn't believe that my fatigue is as debilitating as I find it to be. I'm grateful for the support here, but the lack of it in my home life is terribly disheartening.

  • I have been taking NIACINAMIDE, 2000 mg a day, a B vitamin, for back and joint pain - that has helped me. It might take several weeks before you feel improvement. I have been taking nicotinic acid and niacinamide for 45 to 50 years, I am now 92 years old and still walk, with a walker.

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