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Body aches

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9 years 2 months ago #55043 by Louskii
Body aches was created by Louskii
New here but have had ITP over 20 years. No meds unless you count prednisone before knee surgery. I've always had body aches: muscle, joint and deep bone and notice it's worse when count goes down and/or I'm not managing stressors well. Anyone else suffer with this? My intuition tells me the Autoimmune system kicks in as response to stressors and that's what drives the count down. Thoughts? Hematologist thinks I'm a nutjob.
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9 years 2 months ago #55051 by cs090978
Replied by cs090978 on topic Body aches
My daughter has increased body aches prior to a drop in her platelets, every time! She also has body aches without any drops.
The following user(s) said Thank You: Louskii
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9 years 2 months ago #55056 by Winnifred
Replied by Winnifred on topic Body aches
If you are experiencing aches and other symptoms that are interfering with your normal activities of daily living. Than it is time to have them addressed. The symptoms may or may not be related to ITP.

As for your doctor thinking your a nutjob ( it takes one to know one). sorry couldn't resist.
The following user(s) said Thank You: Louskii
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 2 months ago #55057 by Sandi
Replied by Sandi on topic Body aches
I wouldn't just assume it's due to ITP. Many people have multiple autoimmune disorders and vitamin deficiencies are also common. Speak to your GP about it and see if you can have additional testing done.
The following user(s) said Thank You: Louskii
9 years 2 months ago #55058 by
Replied by on topic Body aches
I'd be interested to know why a lower platelet count would cause body aches - I don't know why that would be a reason for aches. I agree - I wouldn't assume a lower count causes body aches and would want those aches looked into.

cs you said your daughter has body aches even without a drop in counts - have you looked into why that would be?
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9 years 2 months ago #55061 by Rob16
Replied by Rob16 on topic Body aches
Melinda, this is just my theory, but it is simple and I think it makes sense: ITP doesn't cause the aches and pains. Rather, the platelet drops are caused by the same inflammatory flare-ups that cause the aches and pains, only you feel the aches and pains faster than your platelet drops become noticeable.
... for what it's worth.
The following user(s) said Thank You: Louskii
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9 years 2 months ago #55073 by Louskii
Replied by Louskii on topic Body aches
That's right in line with my thinking. I've been tested for so many things so many times with nothing definitive ever presenting.
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9 years 2 months ago #55074 by Louskii
Replied by Louskii on topic Body aches
Lots of testing already, my best results have been achieved while seeing a traditional Chinese medicine practitioner who was recommended by a doctor from Stanford; expensive proposition, though. You may be onto something about the vitamin deficiencies, all about balance. Autoimmune disorders seem to defy traditional medicine.
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9 years 2 months ago #55077 by Aoi
Replied by Aoi on topic Body aches
Also don't forget it's possible to have something else besides ITP, and it doesn't have to be autoimmune either. Several of my doctors overlooked a separate issue in me, one that explains all my aches, pains, joint troubles, etc.
9 years 2 months ago - 9 years 2 months ago #55106 by
Replied by on topic Body aches

Rob16 wrote: Melinda, this is just my theory, but it is simple and I think it makes sense: ITP doesn't cause the aches and pains. Rather, the platelet drops are caused by the same inflammatory flare-ups that cause the aches and pains, only you feel the aches and pains faster than your platelet drops become noticeable.
... for what it's worth.


Ok - it seemed that ITP was being blamed for body aches - if an underlying problem is causing the body aches then it isn't the "fault" of low platelets. Did I get your thinking correct - low platelets (ITP) doesn't cause body aches?
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9 years 2 months ago #55109 by Louskii
Replied by Louskii on topic Body aches
I get that low platelets don't cause body aches. I think that the connection is that there is an immune system irregularity that causes body aches and, in ITP patients, low platelets. Almost all autoimmune conditions seem to have as a common denominator the presence of body aches - to the best of my lay knowledge.
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9 years 2 months ago #55110 by Rob16
Replied by Rob16 on topic Body aches
Melinda,

That is my thinking, fwiw. I also wonder if the same applies to an association between fatigue and low platelets, but TerriC14 wrote that her daughter's fatigue went away once platelet counts were raised using Promacta, so maybe the low platelets do have a direct effect on fatigue and/or body aches.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 2 months ago #55111 by mrsb04
Replied by mrsb04 on topic Body aches
I'm convinced the lower my platelets the more fatigued I am
The following user(s) said Thank You: Louskii
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9 years 2 months ago #55112 by rhoda
Replied by rhoda on topic Body aches

mrsb04 wrote: I'm convinced the lower my platelets the more fatigued I am

i say the same thing.
but this time around is not following the script.
i am EXHAUSTED, but my numbers have been 91 and 143.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 2 months ago #55118 by mrsb04
Replied by mrsb04 on topic Body aches
Oh how annoying Rhoda
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9 years 2 months ago #55223 by Anon77
Replied by Anon77 on topic Body aches
I always know when my platelets are
actively dropping because it feels like the first day of the flu... Before you are stuck on your couch but when you know it's coming.

My hematologist says this isn't
infrequent with itp- it is strictly associated with platelet drops with me and I have no symptoms that would suggest a second disorder. I would guess it's related to the body's immune response- just like a fever is from the cytokines released when you are fighting an infection.

And for what it's worth- any dr that blows off a patient's persistent symptoms is bound to miss a lot....
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7 years 2 months ago #64034 by BDS
Replied by BDS on topic Body aches
Hi, I believe I have body aches from Low platelet count (69). Although this is not due to
ITP. I am taking a strong drug for cancer treatment, Tagrissso. One of the side effects is
low platelets, however I have not read any treatment strategies to illeviat the symptoms.
I am trying Ibuprofen or acetaminophen until I hear otherwise. Any help/ suggestions.
Thanks you!!!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 2 months ago #64047 by Sandi
Replied by Sandi on topic Body aches
BDS:

I would check with your doctor. None of us here are using Tagrissso and have no experience with your situation. I hope things improve for you.
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7 years 2 months ago #64053 by momto3boys
Replied by momto3boys on topic Body aches
No idea about the cancer treatment, but you do want to be careful with Ibuprofen. With low platelets, you don't want to take any NSAIDs like Ibuprofen which can further lower the platelet count. Acetaminophen should be fine from a platelet perspective.

Good luck.
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