Steph castle 155

[Castle155]

Hi all does anyone else suffer with really bad joints & muscles? Most days I find it really hard to get up and move my joints are hurting so much. Itp sufferer for 3 years plus. Any ideas greatly received. 😊

[eciardullo]

Yes l do itp suffer for 3 years my rheumatologist put me back on a low dose of prednisone it helps but is definitely no cure he is going to wean me off in the fall no idea what to expect but l have been on this terrible drug far to long anywhere from 100mg to 20mg right now..no fun good luck...

[virginiabranscom]

Yes, I can tell when my platelet counts are decreasing by the amount of inexplicable (otherwise) aches and pains I have. I sleep more fitfully, too, probably because of discomfort waking me frequently. And we can't really take painkillers, except the (very) occasional Tylenol, which is pretty ineffective. I find that an old fashioned hot water bottle placed on achey joints, especially my back, before I go to sleep, does help some. Hot showers or baths too. Best of luck to you!

[Msvensen]

I was suffering from terrible bone and joint pain and was advised by my doctor to cut out processed foods, sugar and dairy. I feel like a new person!! It's challenging at first but once you figure out what you can and can't eat it gets a lot easier. I occasionally take a day off and go back to what I was eating before and I can totally feel the difference! I can't say that the pain is completely gone but most days I feel ok!

[laurenbeatrice in reply to Msvensen]

yes exactly.you have to watch what you eat.nobprocessed foods&all those preservatives stuff.avoid white sugar&dairy products.Better to settle for organic.

Same her suffered from rheumatism.joints were pretty bad painful.Platelet is 36.but never we did settle for those steroids.Instead,We had HOMEOPATHIC TREATMENT.and I would say it helps a lot from january platelet was 36.started homeo by October and it slowly shot up.bu april platelet rose to 150,highest now 190.sometimes woth allergithrinitis cough&colds it will go down to 100.But we observe strict diet of no processed foods.do fresh juice 3x day organic honey as sweetener.and ITP is no longer a hassle.and a lpt of prayers i would say.

[Lin6 in reply to Msvensen]

I am considering a gluten free diet. Have you tried this too if so did it help. I'm on high dose of steroids at mo it's really affecting my stomach

Any help/advice appreciated

Lin

[crissy22a]

Yes . I've had itp for three years also. I have been on Duloxitine for 2 years . It will stop all the pain. They give it to people with fybromyalga. It really works . I had to rock myself out of bed every morning to be able to stand up . And also help you with depression. And there are no side effects. I'm on the Romoplostim injections.

all the best crissy22a

[Castle155 in reply to crissy22a]

Morning thanks for the info. Where do you get this from? Steph

[crissy22a]

From my doctor. They have saved my life honestly . All the best Chris

[Jami89]

Hi Steph

I do have joint and muscle pain and chronic itp and the specialist think that I have arthritis.

[crissy22a]

Hi , iv had itp for 3 years, I'm taking Duloxitine. It stopped the the pain in the joints . I used to have to rock myself out of bed. I am now ache free. ? It also helps you cope with the depression of having itp . It saved my life . You ask your doctor for them . Also people with itp dont have anywhere for the serotonin to bank, because it is banked in platelets. Well if yiu dont have platelets you dont have seratonin, which means depression. My consultant didn't even know this , I found it out myself !!!