Unfortunately I totally agree with you about suicide and illegal drug traffic, which is so sad. I don't understand what is happening, that they think chronic pain patients do not deserve to have our pain managed so we can have fairly comfortable lives.
I have a tough time as it is on my meds. I have already told my family when the day comes that my meds are taken away I will try but I will not live in constant relentless pain. I just won't do it. Unfortunately the people that have abused the system have ruined it for the people that truly need their medications. And the government has stepped in and now we are not going to get the medical help we need.
It is becoming a very sad world when the people suffering can not get the proper meds to give them relief.View Thread
I had frozen shoulder and yes it is very painful! I didn't have surgery but I have fibromyalgia and my doctor said it is very common to get frozen shoulder when you have fibro. I was in so much pain , couldn't raise my arm to wash my hair, couldn't sleep, basically I couldn't use it for anything, it got so bad I couldn't drive. I went to a orthopedic surgeon thinking it was a tear in my shoulder but he said it was frozen shoulder. He gave me a steroid shot and I went to PT for 6 weeks, 3 times a week. Yes the PT was brutal but keep going, I am amazed at what I can do now. If you don't continue with therapy they will have to go back in and manipulate the shoulder to stretch it loose. I don't think you want that. I also use my tens on it and that seems to help. I know your shoulder problem is different than mine being you had surgery but I wanted to share with you how much therapy helped me. Good luck and I hope the therapy starts to give you some relief. Take Care! CybilView Thread
I am so sorry to hear you aren't getting any relief. I also have vulvadynia and Interstitual Cystitis, I know the pain very well. I went to a womens center for physical therapy they use dialators and put me on vaginal valuim. The valuim has worked wonders for me maybe you could check into that if you haven't tried it. I use regular valuim tablets and insert them vaginally at bedtime, they also have vaginal suppositories.
I am lucky I have a patient husband also, not saying it is easy for him but he is pretty good. Well I just wanted to share what I am using in case in may work for you. I wish you well and hopefully some relief! Take Care, CybilView Thread
Hello, I was wondering if anyone has had Rhizotomy procedure done and if they had excruciating pain the next day? My husband had part of it done yesterday and was up all night and still no relief!
They had him for a long time so I asked the nurse if everything was alright. She took me back to see him, I was shocked how he looked! The nurse said they had to stop the procedure so they did only part of one side. She went on to tell me when the doc put the needle in his back my husbands leg started to shake uncontrollably and then his blood pressure bottomed out. That explained why he looked like he did.
They took his blood pressure a few times then said they wanted him to walk. The nurse got him up and he tried to walk and down he went. His leg kept giving out on him.
The doc came in and said they would finish that side and do the other side in 2 weeks and he could go home. My thoughts were you have to be kidding! So we came home and his blood pressure keeps going up along with his pain. He is on blood pressure meds and is usually controlled. Also he is numb all around his groin area?
I called the doc this morning told him he is in uncontrollable pain. His answer was this is normal take advil, if he is still in pain on monday I will call a few muscle relaxers in but I don't prescribe pain pills. This is a Pain Specialist he sees.
Any thoughts on this procedure would be appreciated. Have a great weekend! CybilView Thread
Thank you for your reply now we know it is normal to have pain/discomfort after the procedure. My husbands family doctor called in some pain meds for him and will see him this week. My husband is really unsure about going back to the pain clinic that did the procedure. He will discuss that with his family doc when he sees him next week.View Thread
CTBeth, I just wrote a long Post and lost it! Anyway, I have not had the epidurals but I know there are many different kinds of pain blocks that are offered for IC. I will ask the next time I go to the IC Center. I didn't think it was odd at all that you were interested in IC. Your friend is very lucky to have her in your life. It would be so nice if more Family and Friends would take the time to educate themselves on our daily struggles with Pain. I have never heard of IC getting better after menopause. I am so happy for your friend that she is feeling better. I am 55 but I had a total Hysterectomy at age 28 so that won't happen to me. The DMSO cocktail actually made me worse so I don't do that. Using a Tens across my bladder and lower back seem to help me somewhat. Nothing takes all the pain away and some days are much worse than others. We can only keep hoping they will find a cure. Take Care! CybilView Thread
Hi I am so sorry you are suffering with IC, I too have had it for many years. I have not had the epidurals but I did go to an IC center for treatment.
I have been on Elmiron for many years and it does help me somewhat but if you don't have insurnace it is very exspensive. I went through a very extensive work up which included exploratory surgery and bladder biopsy. There are many different meds they can put you on to help to be more comfortable like vaginal valuim for one. I use a tens machine and went through physical therapy for 2 months and now I do it at home everyday. The therapy was very uncomfortable but I have to say it has really helped me. Diet is also supposed to be a big thing so you should check out the IC diet. Most women with IC also have problems with their pelvic floor muscle. I have been on and off a few different meds in the last year. I am also on the Fentanyl Patch and breakthrough pain med for the IC and Fibromyalgia. Along with many other meds, I take an antibiotic before having intercourse as a preventive. If I don't take one I go into a major flare so that has been a huge help for me.
I have learned that you have to go to a doctor that specializes in IC otherwise you will get nowhere. Unfortunately there is no cure for this yet but there are things you can do to make it more comfortable. I would encourage you to go on the ICN site it has so much info and there is a blog you can read and post on. http://www.ic-network.com/forum/showthread.php?t=63879&goto=nextnewest Also make sure you go to a doctor that knows how to treat IC I went to 3 Urologist before I found the IC Center. Good luck & hang in there I no what you are going through it is such a painful condition. Take Care! CybilView Thread
So sorry to hear what you are going through, I have been there I also have IC, Fibro,DDD and a few other diseases. I was surprised when you stated you had to quit taking your pain meds because you lost your insurance. I too lost my insurance but there is no way I could go without medication. Are you aware that the pharmacutical companies have programs so you don't have to go without your meds? That is what I did and I received my pain meds along with all my maintenance drugs. The program is wonderful and is very little paper work. I continued to get my meds from them until my disability was approved last year. As far as your IC have you seen a urologist that specializes in IC? I went to 3 urologist before finding this one and he is practicing cutting edge treatment, has written many articles and has been a guest at the National IC Foundation and has just founded an IC womens center where I am being treated. He has many trial studies he also does. After seeing him the first time it was the first time I had hope. Have you had all the treatments like instillations, Elmiron,vagina valuim, etc? and when is the last time a doctor has done an exploratory of your bladder? Do you have hunners ulcers present all the time? Also with your other diagnosis has the doc told you that you have pelvic floor disfunction? We know for right now there is no cure but we have to try every option out there. Believe me I understand how painful this is and how it effects your whole life.It has taken quite a toll on my marriage. As far as your family no they can't even fathom what our life is like with this disease. I have come to that conclusion and try not to talk about my pain to them or tell them what pain meds I take. It is just to frustrating, because they just don't get it. Until they are peeing blood and screaming because it hurts so bad they won't know. I just had another exploratory 2 months ago where my doc went in and scraped the hunners ulcers and inserted med to calm things down. .Also I donated tissue from the bladder for his study as he is determined to find a cure. I went for physcical therapy , am on meds and use a tens machine. Don't get me wrong I still have constant pain and then there is always the major flares but I am much better since being treated by this doctor. It is quite a drive for me to go see him 1 1/2 hours but it is worth it. I have read on the IC site where some women have had their bladders removed. I hate to see you do that and just wondered if you have seen a doc that truly specializes in IC. My heart goes out to you as an IC suffer, I hope you get some relief from this dreadful disease. Take Care!View Thread
I know your struggles I too have IC, along with fibro and a few other things. I went to 3 Urologists before I finally got some help. I now drive an hour to my new urologist but it is worth it. My advice is to see a Urologist that knows about and treats IC, the first 2 I went to didn't know what to do for me. Go On the National IC site http://www.ic-network.com/ and you can find a Urologist that treats IC in your state. My Urologist has written articles and was a guest speaker on this site, I really like him but he is in Michigan not sure where you live.
Are you on anything for your IC? I take Elmiron for pain, anti spastic med and muscle relaxers. I just had surgery where he went in the bladder (Cysto Hydrodistention & Retrograde Pylegram) and looked for the hunner ulcers that we have and he cauterized them, took a couple of biopsies and put some med in there to calm things down for a while. My bladder when I am really bad is full of hunners ulcers and I bleed not too mention the pain I have all the time.I am also going for Physical Therapy for Pelvic Floor Muscle disorder which many people with IC have and don't know it. So you see you really need to go to a doctor that knows all about IC many Urologists don't. I know how you feel it effects your everyday life. I feel very hopeful that this doctor is going to help me. There is no cure for IC but they can make us more comfortable and better equipped to handle it. I hope this helps and you will get a lot of good info from the site I mentioned. If there is anything else I can answer for you just post me a message. Hang in there I feel your pain! Try to have a good day! CybilView Thread
I am also on Fiorinal #3 which I normally take 4 times a day for breakthrough pain which I have been on for 20 years on and off. I originally was taking it for my migraines that would put me in the hospital for weeks at a time. I have been on every kind of pain med available for migraines and nothing worked, Fiorinal was like a magic pill for me it is the only thing that worked. Since I started taking 4 a day I have not been in the hospital, my neurologist put me on this regiment. My neuro put me on 4 a day after I was diagnosed with fibro, DDD, Interstitual Cystitis, severe Arthritis, and a few other problems.
I also am on Fentanyl Patch, so I use this for breakthrough pain. I also went to a pain management dr. for a second opinion and that doctor told me for all my pain issues I was on the appropriate meds. She told me Fiorinal #3 was just as good as any other opiate for breakthrough pain. If it works for me and she didn't want to change anything right now.
I take it when I need it and the combination of meds I am on 16 total have been a life saver for me. I am happy to say I haven't been in the hospital for pain issues in 4 years. I just had surgery thursday and along with all the heavy meds they gave me they also had me take my fiorinal because that is what helps me.
I do understand Annette about rebound headaches, I also went to a headache clinic. I just know this has helped me when nothing else worked. It is in my chart not to try imitrex, maxalt and that kind of drugs because of what they did to me when I take them. I also have High blood pressure and a heart mumur from rhuematic fever.
Just thought I would share what works for me and my doctors are very supportive. I am finally on the right meds for me to get through the days. It has been a lot of trial and error but we have found the right combo for me.