Hi: Hi I'm 38 I have itp and I've had... - ITP Support Assoc...

ITP Support Association
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Vickymm
Vickymm

Hi I'm 38 I have itp and I've had it for 14 years I've only had treatment once when first diagnosed drs think I might have had it longer, I found out I had itp through lumps on my legs that turned to bruisers I had to have 6 weeks of blood tests and 3 months of steroids and steroid infusions since then I've had no treatment. I suffer with ibs, endometriosis and possibly fibromyalgia. I stuffer bad hips, restless legs, pain I'm my wrists, arms, and I'm always tired.

I was wondering what exercises I can do to help relieve the aches and pains

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Hi Vicky I have been diagnosed with ITP for about 3 years my count at the lowest has been 29. I have never had any treatment I just have a blood test every month and monitor how I feel i have an extra blood test if I think I need to. I also have pains in my wrists and arms and feel very tired (drained). I would also like to know if anybody does any exercises that they think may help

Hi Vicky, You could try aqua aerobics. I have been doing it for some time now and it is about the only exercise class I can work hard at without being in terrible pain the next day. Worth a try at least. Exercise, for me, helps my joints with movement and my emotional state of mind.

Hi, where do you live? I’m in Chicago, USA within a 15 mile radius of 5 major medical centers and thus have access to the top doctors in the country. To diagnose and treat itp with ONE course of steroids and no follow up would be considered negligence and/or malpractice. What is your platelet count? When my counts drop to 25 thousand or less I have increased fatigue, bruising, irritability, pain and depression.

Your symptoms may be related to low platelet counts, have you been diagnosed with fibromyalgia? Please see a Hematologist if possible to confirm your diagnosis. This site has a good educational section check it out, learn as much as you can about itp diagnosis and treatment options. Be well:) Georgia

Vickymm
Vickymm
in reply to Kyriak51

Hi I'm from the UK my GP thinks I may have fibromyalgia as well as itp but don't know where to go for more help on fibromyalgia, I also have IBS x

Vickymm
Vickymm
in reply to Vickymm

I've had itp for 13 years not 3 my last count was 120 hospital diagnosed me years ago only had treatment once when I was first diagnosed not had any since I see my hemo Dr yearly now x

Kyriak51
Kyriak51
in reply to Vickymm

This site has an excellent educational site you can also check: mayoclinic.org for information on fibromyalgia and IBS. Did you mean to say “ your GP didn’t know where to go for information on these diseases “???? You need to see a hematologist to diagnosis your ITP also are receiving treatment for ITP if so what treatment regimen are you on, what’s your platelet count range? Learn as much as you can about disease and treatment options, be strong:)

Hi Vickymm I do aqua aerobics and beginners yoga both seem to help.

Hi,

It seems the Americans tend to always treat, UK are more likely to treat only if you can’t cope/ in danger. I have a regular count of between 15 and 30 platelet per unit, and I’m usually NOT medicated for getting on for twenty years.

However when your immune system starts to go wrong, you are more likely than another human to pick up another auto immune issue. I have recently been diagnosed with Lupus, which is horrible & so is the medication, many of them also suffer with fibromyalgia too. I bet if you look there is a fibromyalgia group on here too.

Brain fog and fatigue seem to be standard problems across the auto immune community. Think we have all experienced that.

Hope you get some answers. But honestly, the longer you can stay off the meds the better!

Now I’m also happen to be a fitness instructor! Walking is one of the most underrated exercise. I even got a dog recently to help keep me walking. Swimming/ water based exercise is good because your body weight is supported. What do you enjoy doing?

One of the most important things with auto immune and exercise is that you need more rest than ‘healthy’ people, if you rest well, it’s amazing how much you can build up to!

Hi vickymm, have you tried yoga or Pilates ? These exercises are gentle , not only they help you stretch to release the aches and pains, you also get to strengthen your core .

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