Pain Concern
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Is there a cure for CPPS ?

I've been living with CPPS for over 6 years. The pain gets severe this year. I've tried many treatments but no result. Is there a cure for this painful condition?

Update: I'm sorry for not expressing myself clearly and had misled all of you. CPPS stands for chronic pelvic pain syndrome. I'll keep update if i find a way to get rid of it.

Update: I'm taking a herbal medicine called diuretic and anti-inflammatory pill now. It's made from natural herbs without side effects. Hope it can help to relieve the pain.

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Sorry about your condition. What does

CPPS stand for?

Good Luck from the US

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It is CRPS,complex regional pain syndrome!

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Thank you. Is it similiar to fibromislgia

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I don't know anything about that condition?

Sorry

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CPPS stands for Chronic Pelvic Pain Syndrome. It's different from CRPS.

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Hi david52 no there is no cure for crps I had it for 6 years and in that time I had my left arm above the elbow and my right foot amputated because my crps was bad my pain specialist told me that was the worst case of crps that he had seen in the last 20 years or more. U need to back to u specialist and get them to sort out some better meds to help u with the pain.

Best wishes to you

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I'm sorry for the situation you were in. My condition is different from yours. CPPS stands for chronic pelvic pain syndrome. Thanks for sharing your story and the kind advice.

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Ditto Yogibe...get something for the pain asap.

Sky

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Thanks!

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My daughter has crps in her right leg she is 14 but no there is no cure but as time has gone on she has managed to try and distract herself from the pain from anything to listening to music or just watching tv or drawing it sometimes helps.x

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Me too...mine is in my right leg-foot...and I cope with it via my rehab + meds for my primary conditions (infant onset lupus + vascular ehlers danlos + primary immunodeficiency) + lifestyle techniques. I'm 63 & have been living with CRPS for 10 years 🍀🍀🍀🍀 coco

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Hope your daughter will get a radical cure soon. CPPS stands for chronic pelvic pain syndrome, it's quite different from CRPS. I'll try my efforts to cure it.

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Hi David,

No there is no cure.But don't despair,I know how easy it is to do that!

I smashed my right wrist and possibly damaged my left hand digits too.I have 'residual CRPS' which means I have the symptoms that I had at first but without the searing heat.

The pain is still evident though and the constant needles and tingling.I also have what I think is like cattle prods going into my fingers.My fingers tremor and the pain when I cath them or my wrist is excruciating.I found CBD oil earlier this year which has helped enormously.I have terrible head pains which could be the result of my fall or CRPS no one seems to know?The oil takes the edge off the pain for me and helps me have a more restful sleep.

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Where did you get the oil from maybe it might help my daughter get some sleep at night

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Hi,

I bought it from CBD brothers online.You can buy it on Amazon too.I did try another which was about a third of the price but it was just like olive oil.It isn't cheap but I find I can cope now.Suffering from high levels of pain and the effect of prescription drugs many of which are opiate based it was my only hope!

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Thankyou for that will defitnetly buy some for her how do you apply it and how often

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I put one drop under my tongue and let it absorb.That was the way it was recommended.

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That great thankyou x

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Sorry forgot to ask (sleep deprivation she was up most of night) what is it called x

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Hermes123. I had a pain spike on Monday terrific head ache as well the pain spike was of the scale so when I was due to take my tea time paracetamol I swapped them for Tramadol as advised by my chemist, it works, but can take two to three hours to get into the blood steam. Last night Wednesday evening I suffered a bout of shake and shivers it took me about twenty minutes to get up the stairs to get into bed, I have had it before and it is not very nice at all. Can someone tell me what causes it.

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Thank you for sharing your experiences with me. My condition is quite different, it's chronic pelvic pain syndrome. But your advice is so helpful for those who are suffering from CRPS. Thanks anyway.

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Idea only david52, - Check out if crps is linked to vitamin deficiencys.

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I'm sorry for not expressing myself clearly. CPPS stands for chronic pelvic pain syndrome.

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Apologies David!

I haven't heard of that condition and suspect it is very painful.How does it manifest itself?

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I have CRPS and I have just had a lidocaine Infusion. At the time I didn't feel any different, (last Thursday) but now I do. The painful pins and needles have eased and the burning has settled down. Also where I had my ankle pinned it constantly felt very sore and bruised, but that has also improved. I would recommend anyone with CRPS to look into having a lidocaine Infusion. I will definitely be going back for more xxx

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Thank u for that information Beth

I have got a pain specialist appointment in Dec so I am going to ask him if I can have one 😉

How do they do it ?

Christine CRPS

I HAVE CRPS IN MY LEFT ARM/HAND/FINGERS

XX

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They put you on a drip and monitor you over an hour. So nothing painful. Good luck in pain clinic, I hope it helps you xxx

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I'm sorry for the situation you are in. Hope you will find an efficient treatment soon. My condition is called chronic pelvic pain syndrome. It's quite different from CRPS.

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Hey there. Can you tell me what did you tried for this syndrome? And do you suffer from ED, urination problems and does your pain gets worse when sitting?

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Hi BaneBane

Yes I do suffer with urination problems !!!!!! It's ruining my life !!!!! I suffer with CRPS THEN 8months later I had all these wetting myself sitting down,standing up, walking , it gets worse when my burning pain is 8/10 or if I am stressed etc: had all the tests all come back normal😊 Specialists says its to do with the stress of the pain,not sleeping, depression,anxiety etc 😪 Have not lefted my house the last 2 weeks because it's that bad !!! With the pain and wetting myself it gets me really down 😪😪

My house feels like my coffin most of the time 😞

Drs,specialists have said they can't do anything for me 😞

If anybody knows ways to cure it , I would be extreamly grateful

Christine CRPS

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Hi BANEBANE

JUST SENT TWO MESSAGES TOGEATHER

ONE PART WAS FOR U

AND ANOTHER PART WAS FOR BECKY

CHRISTINE CRPS

TAKE CARE

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I would recommend 2 things; first, check your pelvic alignment with any chiropractor, i had the same problem and my doctor notice that i had a misalignment in my pelvis, realignment of the pelvic will help a lot (may be it is the origin of the problem).

Second, check the level of vitamin D in your blood, this vitamin or hormone has a direct effect in your pelvic muscle healthy ( you can google it), I checked my level and it was too low, please try and let me know if you get any improvement.

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You have not said what you have tried and for how long. There are things you have not tried.

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I've tried antibiotics, natural remedies, and physical therapies, but none can get a radical cure. It's chronic pelvic pain syndrome, not CRPS.

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There are many physical therapies. What physical therapies please? What did you do in the physical therapy?

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Is it like fibromyalgia?

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It's hard to say. But it's really painful.

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I am so sorry that you are in so much pain.

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I would still be inclined to check out your vitamin D and vitamin B12 levels david52.

B12 deficiency can give pain from head to toe also spine problems.

Vitamin D3 can help treat and prevent many conditions and 85% of us here in UK are either low or deficient in vitamin D. I was told there was no cure for my tailbone pain, yet a higher dose of 5000iu vitamin D3 cured it almost over night along with many other pains and stiffness I also had.

Might be worth a try if you have tried many treatments and still can't find the answer.

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Also taking vitamin D3 can help prevent many more serious illnesses too.

vitamindcouncil.com for modern safe up to date doses and illnesses Vitamin D3 helps.

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Thanks for your advice. I'll give it a try.

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My friend had knees that hurt, she tried everything going, since on the vitamin D3 her knee pains have gone. Can't say everything vitamin D3 cures, but certainly worth trying. My family and friends are all on 5000iu of D3 we take it with 100mcg of K2, K2 helps calcium go to where it should and takes calcium out of the places it shouldn't be.

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Just noticed your post and wondered if you had posted on the Pelvic Pain Support Network as they may have more specific advice concerning Chronic Pelvic Pain Syndrome.

Hope you get some help and relief soon.

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Thank you ! I found a herbal medicine called diuretic and anti-inflammatory pill. My friend told me it's efficient on CPPS. I'll give it a try. If it doesn't work, I will post on the pelvic pain support network to get some help. Thanks again.

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I would recommend 2 things; first, check your pelvic alignment with any chiropractor, i had the same problem and my doctor notice that i had a misalignment in my pelvis, realignment of the pelvic will help a lot (may be it is the origin of the problem).

Second, check the level of vitamin D in your blood, this vitamin or hormone has a direct effect in your pelvic muscle healthy ( you can google it), I checked my level and it was too low, please try and let me know if you get any improvement.

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For anyone who comes across this. I was diagnosed with Prostatitis/CPPS about a year ago. After going to multiple urologists, neuropathists (to make sure my kidneys werent an issue) and hundreds of dollars in urine, blood even semen tests I have had it come and go. I also had one urologist tell me it was all in my head and prescribed me amatriptaline which is a anti-depressant with pelvic nerve blockers. I did not want to do this because that addresses the symptom not the problem and becomes a dependance with ED side effects as well as the usual A.D. side effects. No thanks.

A few things. 1) I havent had a cystoscopy yet which I should to make sure this isnt related to a spermotocele (spelling might be wrong) or any other blockages or enlargements. Prostate has always been diagnosed as normal size via cat scans. What I do have is massive amounts of stress (it all started 3 months after my mom passed) and L5 vertebra damage and spondylosis. So the nerves and everything down there are all screwed up. But one thing that come away with strong results was being diagnosed with a weak pelvic floor muscle. It's pretty much the muscle under your perineum to my best understanding. 2) I was prescribed physical therapy but a very specific kind that is very hard to find. You need to find a pelvic floor therapist and very few are found and sadly pelvic floor therapy is specifically not covered by a majority of insurances. Luckily the one I went to padded the documentation and wrote it in as general physical therapy. Apparently the anus, inside, has very very few pain receptors and if your feeling pain inside when a finger is pressed around the edges it means the muscle is incredibly weak and susceptible to pain.

What pelvic floor therapy involves is something you have to be comfortable with so I'll try to explain it as scientifically as possible. 1) Weak core and pelvic muscle can be strengthened through a lot of pelvic based exercises. I do about 5 specific ones every other day. Cat cow, Upper body pushups only, Marches, Pelvic thrusts, and side to side pelvic rotations. 2) Electrostimulation of the pelvic floor through the anus. Sadly for men the best path to your pelvic muscle lies there. The treatment involves a specific small hourglass shaped probe that's inserted about an inch or two and for 10 minutes it electrically stimulates the muscles within. It doesn't hurt at all though! So dont imagine shock. The electro stimulation causes the muscles deep within to contract hard for 10 seconds. Then stops for 10 seconds. That goes on for 10 minutes. Usually before this there is also a round of digital pressure stimulation. Another cause is there are nodes of tensed muscles within the anus and pelvic floor that kinda...get stuck in tension mode. The therapist would insert their finger in and move it slowly in slightly hooked position till I felt pain. Then they pressed hard for about 10 seconds and I would have to tighten and release my muscles myself while they did this. Believe it or not after every session my pain went from a 8/9 down to a 2/3...sometimes even a zero! And I'd feel great for days. Eventually they taught me how to do it myself using a "wand" that curves enough for you to do the digital (meaning finger) pressure stimulation myself. It's called the serenity pelvic floor massage tool by CMT Current medical technologies inc. Sadly the electro is not available for home use.

Sadly I had to stop going because the co-pays were killing me and so was finding time to go 2-3 times a week after a new job and medical insurance demanding I have to see my urologist again to prove I still need the therapy. It became too unmanageable time and financially. But it really helped. I hit a point where my stress decreased and I was pain free for months. Sadly it has started again after getting violently sick with the flu and all my muscles got screwed up again and work piled on massive amounts of stress.

My symptoms are thus so maybe people can see how CRPS differs from Chronic Non-bacterial Prostitits/CPPS. I have sharp/dull pain in one testicle which feels like someone is constantly just gripping it with pressure. Lower back and abdominal pain. Leg weakness and pain. Most of the pain feels muscular. I dont feel pain in my nerves. Its never like needles. It's just a constant relentless sore and tension and pressure pain. Back sides would burn and hurt. Trouble holding urine and letting it all out. And perenium and anal pain sometimes and painful erections since the testes would tense and the pain would increase. The problem is nothing diagnoses this except the complete lack of any bacterial or viral infection. It started with a bacterial infection for me however I had an entroccoal facillis (basically fecal matter) infection and after I took Cipro (which SCREWS UP YOUR NERVES AND I PUT HEAVY BLAME ON IT JUST LOOK UP POST CIPRO HEATH PROBLEMS) and that's when the pain got a million times worse.

Hopefully some of this might help. The PT and the trying to manage stress help. I'm also trying to get back into shape to hope a lighter weight and healthier body handle this better but I have to say the pelvic floor therapy is VERY helpful. Find a physical therapist who knows what cpps/chronic prostatitis is and see them if you can. Best of luck to anyone who winds up in this boat. Acupuncture has helped some (just started. Believe me I thought it was all hooey and a scam but I felt great after my first session) and I'm off to a Chiro for similarly mentioned pelvic misalignment.

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