Prolotherapy

Hello everybody! My names lea and I have EDS hypermobility. I've had numerous dislocations in all joints just from rolling out of bed, I was only 14! I was so desperate to find a cure, because going to therapy only caused me more dislocations and subluxations. I found a miracle treatment called prolotherapy. Now I'm 15 and I've had prolotherapy done in my shoulders. It truly Saved my life. I haven't dislocated them since! I just wanted to share with people that maybe this can work for you! Just look it up it will only take a few minutes and can maybe change your life forever!! Good luck to everyone and I hope that this post can at least help someone suffering!<3

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Hello Lea222,

I am happy you received a positive result from prolotherapy. It is great to hear your shoulders no longer dislocate.

I do have to take issue with the words "cure" and "miracle". Prolotherapy has helped some people with EDS. Prolotherapy has also harmed many making their issues with EDS worse. The majority who have tried it have received neither positive nor negative results. Prolotherapy has not yet been scientifically studied for the effects of Prolotherapy on those with Connective Tissue Disorders. Additionally insurance does not cover this expensive option. I have received numerous messages from those who had disastorous results and seen others' experiences in various closed Facebook groups.

Again, I am thrilled you have had success with it and I hope that continues to be the case in the future. Please understand that it does not help most like it did you.

Take care...

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I understand where your coming from I'm honestly just trying to help people, even if this helps one other person then it's worth it. My prolotherapy was only 60 dollars each time, to me that "expense" was worth it. Just letting people know there are alternatives to surgery that might be able to help them..

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Hi Lea,
It is always encouraging to hear when someone finds a treatment that works for them - thank you from sharing. Having followed these boards for quite some now, it does seem to matter who you see for prolotherapy. Would you be willing to share the name of your doctor?
thank you:)

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:) I go to Dr. Purdue in Seminole Florida, he is a phenomenal doctor! And yes of course it depends greatly on the doctor! He has helped many others who have hypermobility and EDS, he is very skilled and a wise person. So make sure your doctor knows what he's doing obviously! Good luck to you!!

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Troll much?

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I have been waiting to hear from my orthapedic Dr. That Cleveland clinic will let him do it and that my insurance will cover at least some. I want to do it and yet I am afraid to. He wants to do my knees which have minor dislocations every time I walk. I would love for my ankles to quit collapsing too. Has anyone had their ankles done?

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What does troll much mean? I am just curious as I have seen it mentioned on other posts?

I am glad prolotherapy has worked for you, I am considering it as an option as soon as I can afford it as the VA in SD will only help with minimal expenses concerning this treatment option.

Hooray for you, I am always glad to hear when someone is feeling better.

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I have a couple of friends who had great outcomes with prolotherapy for the spine, SI joints. My understanding is that PRP (platelet rick plasma) therapy is even more effective but more expensive. I hear prolotherapy takes a couple of treatments but PRP takes fewer to work usually. I did have one friend get her upper cervical spine injected and had severe neurological symptoms afterwards but was brave enough to try again with a more skilled practitioner and has resolved her symptoms. Many doctors doing injections will do them under flouroscopy (like ultrasound where they can see what they are doing inside) and that seems safer so the doctor can be sure they are not hitting the wrong strutures (ie nerves especially) around the area. I know the research on it is inconclusive, but there are those that swear by it.

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While positive (and negative) anecdotal evidence exists, objective literature—studies not done by and approved by prolotherapists, in other words—do not exist to prove that prolotherapy helps EDS: "Prolotherapy, in which saline and/or other irritants are injected in tendons or around joints to induce scar formation and increase stability, has not been objectively studied. It is probably safe and probably subject to the same limitations as orthopedic surgery [which are] in general, orthopedic surgery should be delayed in favor of physical therapy and bracing. When surgery is performed, the patient and physician should cautiously anticipate some improvement but expect less than optimal results. Unlike the classic and vascular types of EDS, the hypermobility type has no increased risk of perioperative complications." http://www.ncbi.nlm.nih.gov/books/NBK1279/

Prolotherapy should probably be ruled out in EDSers for whom healing normally is a problem. It has the potential for being harmful. Some EDS specialists are absolutely negative about prolotherapy, others less so. Prolotherapy's helped some EDSers, it's made others much worse. It's also expensive, and as an alternative therapy, usually not covered by insurance. Prolotherapy has only be in widespread use since the 1950s, 50 years after the first cases of EDS were described; we all know how little is truly known about EDS, and even less is know about how prolotherapy interacts with EDS.

"There is conflicting evidence regarding the efficacy of prolotherapy injections for patients with chronic low-back pain. When used alone, prolotherapy is not an effective treatment for chronic low-back pain. When combined with spinal manipulation, exercise, and other co-interventions, prolotherapy may improve chronic low-back pain and disability. Conclusions are confounded by clinical heterogeneity amongst studies and by the presence of co-interventions." https://www.ncbi.nlm.nih.gov/pubmed/17443537

"This review included five studies that examined the effects of prolotherapy injections on 366 patients with low-back pain that had lasted for longer than three months. Because these studies used different types of prolotherapy injections and different treatment protocols, their results could not be combined. The five studies we examined were therefore divided according to whether they used prolotherapy injections alone or combined prolotherapy injections with spinal manipulation, exercise, and other treatments. Of the five studies we reviewed, three found that prolotherapy injections alone were not an effective treatment for chronic low-back pain." http://summaries.cochrane.org/CD004059/prolotherapy-injections-for-chronic- low-back-pain
See discussions: https://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion /prolotherapy-and-prp/ and https://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion /prolotherapy-anyone-had-it-please-share/, in which it is reported by a member that "Dr Brad Tinkle, MD....who has authored at least 2 books on the subject, and attends the convention too. He wrote back and basically said prolotherapy is not recommended for EDS. He would NOT send any of his patients for it, and hopes we don't try it. I think it goes against our condition, and with EDS, he said it won't work. It is also VERY painful, so you need to be aware of that too."

My personal experience is that no one thing works for all of us. EDSers vary so drastically in symptomatology and severity that each of us has to be careful in what we use for treatment. Intervention is best for me when it's careful and non-invasive, and is careful not to make things worse in other areas. We are not all the same. We don't all heal well. We don't all have the same EDS in severity or type.

Prolotherapy in some types of EDS could be destructive—if you're susceptible to blowing out tendons or muscles, as Vascular EDSers are, I really don't like the possible results of injecting an irritant into one.

My own opinion: Some of the damage we do to ourselves and possibly a lot of our pain in hypermobility is in the form of microscopic tears in tissue, which happen when our joints sublux or dislocate. Only recently have we been able to see these tears in MRIs. Tears in tendons, ligaments, muscle, fascia trigger the inflammation response. Prolotherapy's purpose is to trigger the same response; and for me, I can't see why doing more of it to myself will help more. It might help those with less severe EDS who don't dislocate and sublux constantly, I don't know.

Please listen to the advice of your EDS-knowledgable doctors.

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Sixty bucks is a really good price, I have been paying 300 to 500 a session and having to make a whole day route trip to drive to the doctor qualified to do my vital areas.

I have been one of the ones that it has helped, but it seems that in my case unless I keep up with having it done every other month or so my body reverts back to it's old self so it has left me wondering if the ongoing cost justifies the results.

I truly wish that there was a way for science to determine the mechanism in which it changes my physical structure during that period because if the corelation could be found I am sure there is a segment of the population that is like myself and possibly other means could be found for the treatment aside from injecting the solutions directly into the joints like they do now.

It sounds absolutely stupid when you tell someone that sugar water injections can make dramatic physical differences to an anatomy, but as much as a pessimist I can be over such things I cannot dispute that during those periods my collapsed arches go away, my spine straightens and I get taller, and my pain decreases and I feel superhuman.

Go a few months without treatment and my feet are flat again, my posture has gone bad again and I feel like death warmed over.

I have had other doctors ask me if I was sure and I have told them I have ruled out all other variables and I cannot find any other answer logical or otherwise, it is just like if you were to take a viagra and get the desired result and if you took a placebo and nothing happened.

I have had injections of steriods and supposedly the sugar water and had better results with the supposed sugar water so what can I tell them other than in my case what shouldn't work does and should doesn't, just like if I could go to the pharmacy and get a bottle of placebos or a bottle of Vicodan and if the sugar pills worked better for me I would much rather go in and get the sugar pills but unfortunately that has not been the case.

I am glad it is showing you some benefit and hope that the benefits are long lasting for you, but for those that are considering it as an option please consider all information available to you and understand that it is not recommended for everyone and in cases of those with autoimmune problems it could actually be very harmful to you since it triggers the bodies immune system to get to work in the areas injected.

I hope everyone has a great day!

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It appears to me that many of the issues with prolotherapy are practitioner dependent. Both my daughter and I are having our initial visit with Dr. Hauser tomorrow. He has had excellent success with EDS patients. I am so hopeful. My major pain areas are hip and knees and hers are neck and feet/ankles. I will report on our progress on this journey.

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when prolotherapy was mentioned as treatment for me, by an orthopedist, i believe in what my physiatrist said, he said, "i will never agree that harming someone's connective tissue is the way to heal it, it is unproven and i will not allow anyone to inject you without proof it WILL NOT harm you." Dr. Sheldon Goldberg, Wheat Ridge, CO.

I had injections in my SI joints and I am traumatized to this day from the horror of the pain. horror is not a strong enough word. That was 2 years ago!!!

A problem for many EDSer's is not being able to be adequately anesthetized, locally. like getting novacaine for dental work, it can take numerous shots for us to even get numb at all. same goes for other local anesthetics like given for steriod injections, prolotherapy, nerve blocks, etc.

Prolotherapy is NOT for me but thanks for the opportunity to share.
peace to all

P.S. the doc who recommeded prolotherapy also said he was sure I had fibromyalgia just in my left rib cage area!!! ha ha. Be careful!

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Hi Everyone

I'm very grateful to read your varying views on prolotherapy - it seems to vary so much patient to patient and practitioner to practitioner. The ability to heal and cope with a high influx of inflammation seems key. 've been considering it for years but the complexity of trying many other things along with fear of making it worse has stalled me. I'm now very desperate, having moved from London to NYC for treatment, and considering prolo in my SI joint to help stabilise it as dozens of 'stabilisation programmes' have been useless, and when my SI is way off my neck and head gets so severely bent I can't walk. My tmj doctor has also suggested having it in my TMJ ligaments. Has anyone here had it in their jaw? I have severe degeneration in my tmj and only functioning with one joint (surgeons obviously propose a joint replacement but I have so many other problems I've resisted) - so again tempted that prolo might help give some greater strength and stability to the area. Peterson1143 - I'd love to know how you got on with Dr. Hauser? I went there twice for a consult in 2005 and 2010, he proposed very aggressive prolo which wasn't feasible while living in England at the time. I hope it went well and update us when you can.

out of interest has anyone tried biopuncture instead of prolotherapy? It's less invasive and involves injecting a healing botanical/homeopathic agent into trigger points and joint capsules. Very few doctors do it and again is unproven.

Best wishes and strength to all.

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I guess I am just really weird... of course I have the same problem with lidocaine and xylocaine not working well with us and have lived through some of the horrors of dental work hurting even though they keep shooting me up until they have used a whole can of cartridges... having a vasectomy under the local twice and the xylocaine not working and feeling every painful moment of it.

But as far as the prolo, I never had a problem with it... as a matter of fact the doctors would always comment about how I never flinched or jumped and how nice I was to work on because I would just lay there getting up to a hundred injections at a time and they never heard a peep out of me.

And my SI joints always used to be my biggest problem area, I had neural ablation, epidural facet joint injections and everything else done to them and nothing helped, but after the very first prolo treatment my SI's started feeling better and although I have had problems with the other areas not holding up long term my SI's still feel way better than they ever have in my life.

I hope that eventually you will find a modality that will work well for you, best wishes!

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Thanks Old Texan for your posting your positive response to prolotherapy - particularly relevant to me as it's my SI joints I'm considering first. I tried it several years ago under someone not experienced enough, was excruciatingly painful and no noticeable difference given it was only one round...but keen to do it in NYC asap! Just holding off cos I need my treatment to be more coordinated and wondering therefore whose best placed to do it. I'm under someone at the Hospital for Special Surgery, but I know many eds-ers have found it helpful going to the magaziner clinic in Cherry Hill, NJ with Dr. Allen Greenberg. Peterson 1143 - how did you and your daughter get on with Dr. Hauser? I went there twice but given I was living in England at the time his treatment plan would've involved moving to Chicago. I wasn't quite ready for that jump! He did propose very aggressive prolo, literally 100s of injections everywhere. Every practitioners seems to vary so much in what they advise, much like every other area of medicine we come across.

Best wishes and love to all. Lucy

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Hi there. I have had it done as well. Lumbar spine, SI joints, Right hand, left achilles tendon, elbow, pelvis, pubis symphasis, buttock areas and piriformis, pelvic floor, adductors etc. I had to travel with hubby by plane, and we would stay at his moms, went to a doc in Jersey. I went 6 times in 1.5 yrs, and 2-3 days each visit considering all of the body parts. It was very tough. At the last couple of sessions, I did mostly PRP prolotherapy, and the recovery was 12 weeks when I got home. So, as far as office visits I had been there between 12-18 times, and they recommened 6 times to come out there from the evaluation.
I know there is minimal if much of anything about proltherapy literature and EDS etc, and that is why our docs are skeptical. They need case studies!!!
I do beleive it has helped me in addition to other things I do. Physical therapy stability and stregthening exercises, walking/swimming etc.. For example, I looked at a spread sheet and July 2011, my pelvis was going out more frequently and when it would go out it would be out an inch. That may not sound like alot, but beleive me, it is, and it FELT like alot. The lower extremities would tightened and my legs etc would hurt badly. This year, I have actually been able to get into "close to normal alignment" and when it goes out, it goes out 1/4 th an inch, and I am very much in tune with my body where we "nip it in the bud" and take care of it right away. So some physical changes have occured.

Since I went so much, we had to fly, stay at a relative, and the long recouperation times and pain, I just couldnt do it physically and psychologically anymore. I felt I made the most gains I was going to. Each trip was basically almost needling the whole body, so it takes a tool. Glad to be over with it, but dont regret doing it. I just say, find someone very skilled who knows EDS and hypermobility.

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