I have not been on in a while because honestly I don't have the energy and not too many people respond to my posts. However, my Fibro is still the same, my anxiety and depression are worse, my back pain is still the same and my stressors are increasing.
I recently had a cystoscopy done at a local hospital and my urologist confirmed Interstitial Cystitis another painful condition I have to live with. He does not want to start me on Elmiron because my liver enzymes are elevated (yet again!).
I was on Low Dose Naltrexone for three months and it did nothing for my Fibro pain, and I think it may have caused my liver enzymes to elevate ---that or pain medications--I'm not sure which.
One good thing is that I found a good psychologist near my home that takes my insurance and I have seen her three times so far. I guess I need to figure out how to deal with my dysfunctional family and life.
I have not heard from my disability lawyer yet, it has been six months since she filed for a hearing. This too, is adding onto my stress, because I am struggling financially.
I cannot take any anti-depressants because they all give me migraines, and my primary is refusing to give me anything for anxiety because he says I'm on enough medications.
(((Hugs))), I'm sorry your anxiety and depression are getting worse but with everything you have going on its understandable. So much of this is out of your control and there is no easy fix. I'm glad you found a psychologist near you sometimes just talking to someone who can validate you have reason to be anxious and depressed makes you feel a bit better. I hope your week gets better.
I’m sorry you feel so bad. I’m at the point of asking for an anti depressant just so I can deal with feeling so crappy all the time so I understand somewhat.
I am not sure that I can say anything that will help. I know that stress was one of my biggest factors. The more I stressed the worse I felt. And having people people to tell me not to stress, or just don't worry about did not help. Its hard for anyone to know the pain you are in, even those of us who also deal with pain on a daily basis. But the support and compassion I have found on this site and been such a comfort to me.
The Disability thing was such a journey for me, and not really a positive one. But I stuck with it and finally after about 1 1/2 I was approved. I miss working and maybe someday I can go back but for now this is where I am at. I have tried many combinations of medications looking for something that works the best.
Keep your head up, I believe things will get better. Sending you as many positive thoughts that I can.
I'm sorry that you're going through all of this. I can totally and completely relate to your not having the energy to be on here much. Ninety to ninety five percent of the time I don't want to go out or even get on here and write because it's exhausting and I know I don't have that much energy. It's our illness.
I'm really sorry that your pain level hasn't diminished from your meds. Can you speak to your doctor about trying different meds? It sometimes takes a lot of different meds until we find something helpful. Or maybe something else could be going on too? I don't know.
SK just shared with us some studies that showed that a substance that's found with fibro, Substance P (I think), is also tied in with depression and anxiety. The way I read the studies, we are at risk of having all three as a result of Substance P. Of course, that doesn't really help us and yet it does, as it shows that the depression, anxiety and pain ARE NOT ALL IN OUR HEADS! Hopefully this current research will help researchers to find better treatment for us.
I'm sorry about your internal cystitis. I've heard that it's very, very painful. Is it treatable or is it something you have to live with? I think so, according to your words. If so, i hope there's a pain medicine out there that can treat the pain, and other meds to help control it.
It's really GOOD that you're seeing someone who will listen. You've just got too much on your plate and you need someone to share with who is a good listener. We try but, of course, we're in the same boat so can't always give advice that is not based upon our pain. I plan on seeing someone again when I return to Massachusetts.
Please keep coming and keep writing. Different people are on at different times/days and some might have helpful advice or a good listening ear for your particular situation.
Hugs to you and hoping you have better days ahead,
Thank you everyone who responded. I'm sorry if I came off as needing the attention, I just get really frustrated and depressed about all these medical conditions as I am sure the rest of you feel also. I did see my psychologist today who validates every thing I feel and my conditions which helps alot. At least she does not think that its all in my head! lol
I am not sure there is another medication for IC except Elmiron. I have to watch my diet. If I do have a flare up now..I just take one 5 mg of Oxycodone and lay down with a heating pad and it calms down. I just thank GOD that I do not work!!
I have to be careful with any medication including pain pills because my liver enzymes keep elevating and my primary is not happy with this.
Sorry the LDN did not help you, but I think it was worth a shot as many do get significant improvement from it. I have to go through constant blood tests for liver and kidneys because of the NSAIDS that I take. Of course they help me the most, so I have been warned to stay within the daily guidelines of these meds, as I don't want anymore health problems!
I talked with a PhD Psychologist for a couple years long before a diagnosis, when I could not recover from a rear end car accident, she did me nothing but good, so I'm very glad you took this important step!
I'm on enough meds too, but perhaps you could take a good look at your vitamins, that may be an avenue to explore?
I'm glad you posted again, sorry if I did not get to other posts of yours, sometimes discussions get pushed to the second or third page before we even get a look at them! Don't give up! Just keep responding to it and bringing it back to the front page!
Hang in there, girlfriend! The eventually warming weather will surely help us all!
Hi Linda I to have IC of the bladder!! I’m so sorry and I feel your pain!! Just wanted to see if your doctor suggested a catheter cocktail? I had these done and they help a lot! Hopefully I can help relieve some pain!!
Hi Linda,
I just wanted you to know you can send me a message anytime I’m here to listen and chat if you need someone. I’m sorry you have this IC… Anything On top of fibro has got to send someone over the edge… Anyways hope your feeling okay tonight, take time for yourself and try to find a happy place mines with. My 4 year old as he runs around singing “everything is awesome”!!! Which is the song from the new Lego movie
Hugs
It sure is hard when you can't take enough pain meds to really get the full benefit from them, due to liver enzyme levels, and there's only one med you can take for your medical problem. Is the IC related to fibro, do you know?
Yeah, it's normal to feel frustrated and depressed and anxious over the fibro, and as the research suggests, substance P plays havoc with us so those very feelings are enhanced from it. If Fibro were a Rubic cube, it would never be solved!
I had a cystoscopy done last week and he stretched my urethra and also distended my bladder. He said that this should provide relief for now and wants to see me in six weeks. He did mention on an office visit the bladder cocktails but he wanted to do the cystoscopy first. So far, my bladder has been fine...I am keeping my fingers crossed!! I used to take Elmiron (with a former urologist years ago)...but it has been known to elevate liver enzymes and mine are now elevated so no Elmiron for me at this time!! It stinks getting old! lol
Yes a 4 year old can certainly distract you! lol..I love them at that age!!! My daughters are grown and unfortunately still living with me! lol....I have alot of family problems and issues that along with all my medical conditions drive me over the edge. I try to listen to music...play my guitar a little and try to relax as much as I can. I also like being outdoors..but have to wait till it gets a little warmer. I feel so much better in the summer!!! Thank you for your kind words! How long have you had Fibro? Any other medical conditions?
I also have interstitial cystitis. I recently read an article about Elmiron and its poor absorption rate in the body. Here is a link to the abstract: http://www.ncbi.nlm.nih.gov/pubmed/16278190?dopt=Abstract . I tried taking it for a short time but didn't feel a benefit. After reading this, I wonder if this is why. But then I read that there has been some success with shooting Elmiron directly into the bladder. Maybe after your liver enzymes improve, you could discuss this with your physician? Or is this one of the bladder cocktails you mentioned?
I can relate to your disability struggles too - it took me three years to get through the appeals process and win my case. But as my attorney said - they turn everybody down the first time. Your persistence should eventually pay off. I know how stressful it is. I lost my house before it was over. I'm happy to hear that you found a good psychologist near your home. Support is so important. If you want to talk, I'll be happy to chat with you. You are not alone. We are all feeling for you and wishing you better days.
