Right??!! There is something about watching them that puts me in a better "zone". I have found shows that I never watched at the time they were popular so it is all new to me!
Glad you enjoy them too!
doggie said:
I love watching some of those old comedy reruns.
Michelle said:
Welcome! I was diagnosed with Fibro about 2 years ago. I'm 62. I live with my husband and 2 adult children. I had undergone terrible stress before the Fibro kicked in. I find the biggest problem is the fatique and feeling like I have the flu. I also have bursitis, stenosis. So I ma dealing with a lot of stiffness and pain. I just started with a new rheumatologist and she put me on 2 weeks of predisone and also a muscle relaxer. I had seen a rheum 2 years ago and she did nothing for me! I just got blood workup back and my ANA was above normal, so I am waiting to here from her about the results. It is Sat. so no Dr.'s around!
I think it is great that you love gardening. Anything that helps is a good thing! I love singing and reading.,,,(just finished the "Outlander" Series......amazing). also find that watching reruns of old comedies is great medicine.
Hi, I am so sorry you are going through this with your boyfriend. My husband was diagnosed with Amyloidosis (a rare blood disorder... it is treated like blood cancer. Chemo and a stem cell transplant, about 3 years ago). I think that the ordeal of going through that was what kicked in the Fibro. I was diagnosed after this. He is remission (knock wood). So now he is taking care of me.
The only thing I can think of for you is to get some other family members or friends involved if possible, for physical and emotional support. We have 2 adult children. We all live together. I don't think I could have taken care of him if it weren't for them.
As for dealing with a flare-up I really wish I could tell you what to do. I wish I could tell me what to do! What you are going through is not helping, as you know. Just take care of yourself. Talk with your Dr. and tell her/him the stress you are under and the toll it is taking on you. Try and find a food store that delivers. That is a great service.
I think other members will be able to give you great advice here!
Michelle
MoJean said:
Sorry it's taken me so long to reply. My boyfriend was in the hospital for a week, and I was staying with him. He is on dialysis, and was doing the home dialysis, but his catheter stopped working, so he had to have surgery to fix it, but it hasn't. He had to have a port inserted into his neck/shoulder area. His catheter still isn't working, the cavity where it is, is bleeding. He's in so much pain, and they still don't know whats going on. As you can imagine it's causing me a ton of stress, and thats causing terrible flare up, there for causing me to stress that I can't take care of him like he needs, and that stress causes me more flare ups lol I would love ideas on how to cope with the flares, maybe help with the pain? What do you do to make your flares tolerable?
Sounds like you’re really having a rough time between you both. I’m currently doing a Pain Management Programme which my Rheumatologist referred me to, its taken a whole year to get on the course as the courses are few and far between. It deals with the psychology involved in pain and is very interesting and I’m hoping it will be helpful…the idea is to help you cope with “dirty pain” which is all the emotional and psychological pain we deal with and hopefully the actual pain will be less overwhelming. I’m currently off work as I’m in a bad flare. I’m finding that listening to my body, exercising within my limits (loads of stretching) and eating healthily are the only things that help at the moment. As I’ve been coping with chronic pain for long time I’ve re-organized my life alot during that time. Everything is as easy for me as possible!
I’m sorry to be nosy…and please don’t answer if you don’t want to, but my job is in haemodialysis and anything to do with dialysis interests me. When you say home dialysis is that peritoneal dialysis with an abdominal catheter that your BF has?
Yes, he was on the peritoneal (Always makes me think of Captain and Tennille lol) He had the catheter inserted and started using that in June. Then earlier this month it stopped wanting to drain. Then it became painful, and he ended up going to the ER, and they sent him to a larger hospital, where he spent a week trying to figure out what was going on. They still are unsure. They went in and fiddled with the tube, and we were told two different things about what they did. One doctor told us a bubble of infection had formed around the end of the catheter, and then another told us something had blocked it. They tried to put fluid in the day after surgery, and it hurt him so bad he was screaming in pain. That was so hard for me to watch. They say he may have to have it removed altogether so they can redo it.
Pookie said:
Sounds like you're really having a rough time between you both. I'm currently doing a Pain Management Programme which my Rheumatologist referred me to, its taken a whole year to get on the course as the courses are few and far between. It deals with the psychology involved in pain and is very interesting and I'm hoping it will be helpful....the idea is to help you cope with "dirty pain" which is all the emotional and psychological pain we deal with and hopefully the actual pain will be less overwhelming. I'm currently off work as I'm in a bad flare. I'm finding that listening to my body, exercising within my limits (loads of stretching) and eating healthily are the only things that help at the moment. As I've been coping with chronic pain for long time I've re-organized my life alot during that time. Everything is as easy for me as possible! I'm sorry to be nosy....and please don't answer if you don't want to, but my job is in haemodialysis and anything to do with dialysis interests me. When you say home dialysis is that peritoneal dialysis with an abdominal catheter that your BF has?
Its very hard to see someone you love in pain, especially when you can’t do much to help them other than to just be there for them. I don’t know that much about peritoneal dialysis, but do understand that catheter problems are quite common, and removing the non patent catheter sometimes has to be done. We often have “resting PD” patients at my unit until they’re ok to go back on to PD. Keeping my fingers crossed for your boyfriend that it all settles down ok.
If you ever need to vent about all of this you can always “friend” me and send PMs
It is, and it dosen't seem to be getting better. He keeps saying he just is sick of fighting and being in pain all the time. Scares me. His pd nurse, and doctor both say they have never seen or heard of this, and they still have no clue what it is, so they keep trying all these different things, and nothing is working. It's scary, and frustrating, and stressful. Thank you for listening to me =) Pookie said:
Its very hard to see someone you love in pain, especially when you can't do much to help them other than to just be there for them. I don't know that much about peritoneal dialysis, but do understand that catheter problems are quite common, and removing the non patent catheter sometimes has to be done. We often have "resting PD" patients at my unit until they're ok to go back on to PD. Keeping my fingers crossed for your boyfriend that it all settles down ok. If you ever need to vent about all of this you can always "friend" me and send PMs :)
Hi MoJean. Welcome to this wonderful group. I have found such support from other members and it makes this disease/syndrome much more manageable. I love what you wrote about gardening. We live in Northern Wisconsin, about 500 feet, literally, from the Upper Peninsula of Michigan so the winters are long, cold, damp and miserable. I was just diagnosed last Summer but I had been in a lot of pain and terribly fatigued for years and just never put two and two together. I am so glad that your doc finally listened to you. I have been very fortunate in that I have a Primary Doc that is absolutely wonderful.
I have a husband (about 12 years old or so-LOL), and one dog. I am very fortunate in that my mobility has not been affected. I have my bad days, especially when the weather is damp and cold but I have been able to walk my dog 2 miles most of the winter. I'd like to say every day as I used to to do that but with the Fibro, I have found that my life has changed and not for the better. There are some days that I am just too fatigued to much of anything.
I also now have to choose, do I walk the dog or do I do laundry as the machine is down steep basement stairs and if I walk her, Livvy, I usually cannot do both.
I am on a medication called Naltrexone. It is a trial drug although it has been around since the 70's. I take one 4.5 milligram capsule once a day and that has helped with the pain tremendously. I also had big problems with what was thought to be IBS and that went away when I started taking the drug. (Naltrexone was used on heroin addicts in the 70's at much higher doses with horrible side effects). So far, no side effects. Because it is a trial drug, I have to pay for it myself but it is less than $40.00 per month, a price I am more than willing to pay.
Are you sleeping o.k.? I had issues with that as well until my doc and I finally got the formula right. Most nights, I sleep like a baby, thanks to better living with Chemistry-LOL!!! I truly hope this site helps you as much as it has helped me.
