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  • #1

    In So Much Pain

    HI All,
    I HAve Had IC, Now For About The Past Five Months ,And Man It's Not Been A Blast Thats For Sure . I As have Fibromyagia, I Just Went Into The hospital The 28th Of Feb, And the Doctor Said He Took Out More Polyps This Time Then The First, And it's Only Been Four Months Since i Had it Done The First Time . I Have been Doing What my Doctore Told Me To Do But It Still Don't Help. I Have Been On Elmiron, and Pyridium Plus, And I Have Had the DMOS Done For Five Weeks Also. At This Point I'll try Anything !!!!I Seen On The Website That Glucosamine /Chondroitin MSM. And Quercentin . So I Even Went And Got that , Can Anyone Tell me if they Have Tryed This And if it Works ? Please .!!!! I Hurt With Burning Down My Legs , It's Just unreal, So If Anyone Can Give me Any Info That Would Be great. Thank You So Much ,
    Tags: None
    • #2
      I just wanted to say to the IC Network! I don't really know anything about MSM but I do know that there are people that have used it and I'm sure they will chime in with their input. Sorry you're in so much pain
      Christine



      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus

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        • #3
          I've been using glucosamine/msm & quercetin for the last month or so. It has helped a lot with the pain, although I don't think I was as bad as you sound. It took about 2 or 3 weeks to really see a difference, so hang in there! Make sure you are good about taking it, don't skip. Hopefully you will see some relief. And make sure you are watching what you are eating & drinking!

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            • #4
              And one more thing... be careful about Chondroitin. It doesn't seem to bother me, but can cause some people to flair. Since you are already in pain, it may be best to get the glucosamine/msm without it. You will probably need to go to a health food store. Look at the ingredients to make sure it doesn't have a bunch of other stuff in it.

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                • #5
                  I use the MSM gel and it works great for me! Roxie

                  Double Spinal Cord Stimulator surgery 8/09
                  Unsuccessful MiniArc sling surgery 12/07
                  Dx'd Hypothyroid
                  Dx'd Chronic Axonal Neuropathy & Myopathy
                  June 2007
                  Dx'd IC May 2006 (after suffering for 25+ yrs!)
                  First Cysto 1979
                  First Hydro 1981 (Many treatments since then!)
                  Collagin"Durasphere" injections for urethra
                  Gall bladder surgery Aug. 2004
                  Gastric Bypass Dec. 2004
                  Dx'd: Barrett's Esphogus July 2004
                  Dx'd: Vaginal Atrophy 2005
                  Bladder surgery 2000
                  Dx'd: IBS 2000
                  Hysterectomy (fibroids) 1999
                  Laminectomy 1989
                  Dx'd: Degerative Disk Disorder 1989

                  For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                  I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

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                    • #6
                      I'm like you~willing to try anything. I've been taking the MSM G. for about 3 wks and haven't noticed a difference. I also have the burning down my thighs. Mostly my left thigh. to all the fun!!!

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                        • #7
                          The Burn,

                          Originally posted by Roxie2007
                          I use the MSM gel and it works great for me! Roxie
                          Hi And Thank you , For Your Input, Bless You As i Have Been Thinking I'm All Alone with This Mess. i Guess I'm Just scared, As I Have Never Had Anything I Could Not Just Walk Away From before. Yes I'm Using The Glucosamine Chondroitin MSM , But I'm Almost Scard To Stay On It As i Think Thats When I Started to Flair With It . I Got The One That Is For RX Joint, As Thats The Only One My health Foor Store Had. Is This one Ok To Take ? I'm Going to The Doctor Today For A DMSO And I'm Asking For A Stronger Pain Pill As he Just Has me On Darvocet 100 Mgs. And it Dose Not Do Anything For Me For the Pain. I Went to bed Last night And Just Cryed. As i Hurt So bad. At This Point And Time I Don't No What To Eat Or Drink, Can You Drink Too Muc h Water ? As i Drink it All Day About 64 OZS Aday. Is That Too Much ?I Stay Away From Everything High in C Supplements. Thank You So Much Again God Bless You , Penny

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                            • #8
                              The Burn

                              Originally posted by GriffsMommy
                              I just wanted to say to the IC Network! I don't really know anything about MSM but I do know that there are people that have used it and I'm sure they will chime in with their input. Sorry you're in so much pain
                              I Just Wanted to Thank You For You Input, That Was So Nice Of You . I'm Just Having Such A hard Time trying To Find My Way Though This , I Just Have never Had Anything Like This That Just Don't Get better. And it Scares Me To Death. I'm Going to Day For A DMSO, And I'm Asking For A Stronger Pain Pill As He Just has Me On Darvocet 100 MGS And I Don't See it Doing Any Good At All. I Have been trying To Drink Nothing But Water All day Long . I Get Down 64OZS Aday. But I Still Have So Much burning. I'm Open Too Anything For Help From Any One Here On The Site. Thank You So Much , Penny

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                                • #9
                                  Welcome..sorry you're feeling so bad...

                                  If your doctor won't give you any stronger pain medication, ask him/her to refer you to a pain management center. If I had not been going for the last 6 months, I would not be able to get out of bed. Also, ask your doctor if he/she could give you an instillation containing these 4 medications: Lidocaine, Heparin, Sodium Bicarbonate, and Distilled Water. I can give you the exact amount of each if you want to check into this. I tried the DMSO instillations for a few weeks and they were too painful. I couldn't hold the medication in my bladder for more than 15 minutes and had tears in my eyes until I peed it out. My Uro sent me to a Gyn who had great success with her I.C. patients by giving them the above listed mixture. This type of instill is great. Each time I get one, it feels like cool water has been poured on a fire and put it out! Even after I void, it has coated my bladder and I feel so much better. I started doing the home instillations a few months ago as well. Please ask your doc about this. I think you will find great relief from this type of instill. Are you taking Elmiron as well? Oh, make sure to check (if you haven't already) the I.C. diet. It is listed somewhere on the main page of this site. I hope you feel better soon. I am an Alabama girl too.....from Tuscaloosa.

                                  Originally posted by Ladybug51
                                  I Just Wanted to Thank You For You Input, That Was So Nice Of You . I'm Just Having Such A hard Time trying To Find My Way Though This , I Just Have never Had Anything Like This That Just Don't Get better. And it Scares Me To Death. I'm Going to Day For A DMSO, And I'm Asking For A Stronger Pain Pill As He Just has Me On Darvocet 100 MGS And I Don't See it Doing Any Good At All. I Have been trying To Drink Nothing But Water All day Long . I Get Down 64OZS Aday. But I Still Have So Much burning. I'm Open Too Anything For Help From Any One Here On The Site. Thank You So Much , Penny
                                  Dani


                                  -Bladder surgery to correct reflux-'68
                                  -Terribly painful periods, beg.@ 13 (most likely due to endometriosis, no dx then)
                                  -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                                  -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                                  -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                                  PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                                  -DX'd with IBS in 2000
                                  -Rhabdomyolysis in 2001 (has not returned)
                                  -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                                  -DX'd with TMJ in 2000-wear splint
                                  -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                                  -DX'd with Epilepsy -2000
                                  -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                                  -DX'd with Fibromyalgia (2006)

                                  Medications:MS Contin-30mg@3xday,Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                                    Comment

                                    • #10
                                      You'll find diet information in the Patient Handbook at http://www.ic-network.com/handbook

                                      Hopefully, once you get on an IC diet, you'll begin to feel better. It does not sound like you are drinking too much water. We need six to eight cups a day.

                                      Donna
                                      Stay safe


                                      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                                      Have you checked the ICN Shop?
                                      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                                      Patient Help: http://www.ic-network.com/patientlinks.html

                                      Sub-types https://www.ic-network.com/five-pote...markably-well/

                                      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                                      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                                      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.                                       [3MG]

                                      Anyone who says something is foolproof hasn't met a determined fool

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