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9 years ago  ::  Apr 06, 2009 - 8:37AM #1
Flsunshine49
Posts: 14

Good morning everyone.


I have had reflex sympathetic dystrophy and fibro for 10 years and have had many hospitalizations for pain management, in office treatments and hords of medications. I was so doped up for years. Nothing actually helped and now the cycle starts over again with the trigger injections, blocks and so forth. Now I have osteoarthritis and osteoporosis throughout my body and currently both have taken an active residence in my spine causing degeneration of the disks.Everyday chores are getting harder and harder to do, as are fun activities. Does everyone have a good support system in their spouses, partners or children? My husband has researched both diseases and still doesn't understand why it takes me so long to clean the apartment, why I am starting to stumble and lose my balance and the biggest one is what is wrong with your memory...Any of these sound familiar ? I am hoping this is an active forum to start dialogs with people who are in similar circumstances. Sometimes I feel like I am losing my mind when I am around people who just don't understand the disease process  



Have a great day everyone

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9 years ago  ::  Apr 06, 2009 - 4:38PM #2
Dreamweever2
Posts: 733

I want to say hi and let you know that you are not alone.  My diagnosis is different from yours, but chronic pain is chronic pain, no matter what the cause. I know it can be hard when you don't feel understood by loved ones. I have come to look at it like this. I really don't want my family to understand what it is like to have chronic pain, because the only way they really could understand it would be if they suffered from it too. I have taken family members with me to the doctors office for my appointments. This way, they can hear what the doctor has to say. I don't know if you have tried that with your husband, but it might help. I hope you get feeling better soon. I will say a prayer for you. (((hugs)))


dreamweever

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9 years ago  ::  Apr 11, 2009 - 9:32AM #3
karbie
Posts: 3,329

Hi sunshine,


 I have fibromyalgia, degerative disc, spinal stenosis, osteoarthritis throughout my body, and at the moment all my joints are visibly swollen--even on my toes. I've already had a spinal fusion on my upper spine because some of the discs were completely gone except for some debris and of course the bone spur pressing on the spinal column. I'm shrinking in the wrong direction--I need it to be horizontal loss, not height! I just started on medication to prevent osteoporosis in February. I've switched family doctors...I shouldn't be the one who brings up having things like bones scans and stress tests. I don't know if they were just burnt out or not, but if a nurse had to help catch me to keep me from falling getting on the examining table I should have gotten more than 3 minutes of her time.


 The balance and the stamina go directly to the fibromyalgia; I've had it "officially" for 12 years now. If you try to push yourself too hard, it has a tendency to shove back. Our son commutes to college, and the first year I was in so much pain that if I took anything for it I'd fall asleep. My husband had his leg & back broken and his pelvis crushed years before we were married, so I was trying to help out more with the driving. We just have one car, so the idea of leaving it at the campus all day didn't thrill us. I decided to try to substitute pain for energy to be able to keep going because I knew I wouldn't run out of it. Bad idea.


If you try to keep pushing yourself too much, you can end up with something called "fibro fog". I thought I must be having mini strokes because I started having aphasia,problems with my balance, thinking straight, and being  very emotional without being able to have any control over it. The further you go into energy debt, the worse it gets. I had lost control because the brain starts shutting down everything to survive. It's very frightening when you are the one it is happening to and it was very hard for my husband and son to watch.


So, if he wants to do more research, have him check that out. Does he know how lucky he is that you are managing to get things done at all? If it isn't fast enough for him, he can do it himself. My husband does the laundry because the last time I was doing it I went airborne after the second step on the basement stairs and fell down head first on the concrete. I had managed to get an arm out to try and stop, so I broke my right arm and he says he'd rather do laundry than risk my getting hurt. The only other time I've broken a bone was on those stairs, although it was half a flight. I broke my tailbone the week before I had the spinal fusion. The neckbrace just made it more fun. He'd just fixed a place down there for me with a rocking chair to sit in; there's a shower and a half bath down there and I miss being able to use them.


So what you can when you can and don't let anyone beat you up about it, including you. My husband understand my being in pain because he's been badly hurt himself. YOu are going to find that you will get dialogues going with people here. I've met some wonderful, caring and compassionate people on these forums. We share good days and bad ones, so if you need to let off steam, this is a safe place. We all do it from time to time, but it just has helped me so much being able to talk to people who really understand what I'm going through because they are living it as well. I'm glad that you found your way here--I'm just sorry that you hurt badly enough to need to. Welcome aboard!

"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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9 years ago  ::  Apr 12, 2009 - 5:40PM #4
MarleneEmmett5
Posts: 1,799

Karbie/Dreamweaver2:


I've been here before~I've been away for sometime,still suffering from my problems with my
lower back, I've got three herniated discs/3 compressed verterbrae,2 bad knees and a history of Chronic Migraines for 49 years~all this on top of Epilepsy which is the only thing that's not giving me any real trouble!!!!!


I agree with you Dreamweaver "Chronic pain is Chronic Pain~one never rarely ever outgrows it or gets over it~ You learn to manage it~But, that's it"!!!!!


I've dealt with the pain from my back for 12 years,the pain from Migraines 49 years and both
knees since 1994~and two pinched nerves in my neck-the results of cooking large turkeys
for Thanksgiving dinners!!!!


I really try to manage without having to take my pescription medicaton for pain:
I take Vicodin or Hydrocodine for my back,and Migraines.
I also am on Treximet.
I will only take the meds if I'm in such horrible pain that I can't stand it~otherwise I subsist
on Extra Strenght Tylenol. I'm also on Day-Pro 2-600mg tablets everyday,along with 3
Glucosmine & Condrotion tablets every day.
As long as I have the Day-Pro & the Glucosmine I'm allright~and relatively pain-free.


Trouble comes when it's rainy,cold & damp~or if I've done too much or not gotten enough
sleep or picked up something the wrong way.

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9 years ago  ::  Apr 13, 2009 - 1:45AM #5
Dreamweever2
Posts: 733

Hi Marlene,


I just went back and re read your original post. I had missed the part about memory. I thought my memory issues were from post traumatic stress and the strokes. I didn't know it was one of the side effects from pain, but I'm starting to think that it is. I tend to forget words, and sometimes events too. My kids have gotten pretty used to filling in blanks for me. I found out from my brother that pain causes high blood pressure. That was something I suspected, and found to be true with him when he got hurt. My old primary care doctor would come into the examining room and look strangely at me because I would be dripping sweat from the pain when I had to sit and wait for him. That is often a deterrent when I need to see a doc. I can't sit or stand any length of time before I end up a mess. The car isn't usually too bad because I recline the seat to get my upper body weight off of my butt. I can't say that I manage my pain. I've never really learned how to do that. For me, I just exist. I can get through each day, and that's about the best I can do. I try really hard not to look beyond the day I'm in too much, because if I do, I spiral down. I sure hope that one day, they will find something to help all of us. It sure would be a blessing.

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9 years ago  ::  Apr 15, 2009 - 11:11PM #6
Flsunshine49
Posts: 14

HI everyone


Hope you all has a nice holiday weekend. We had some friends over for a cookout , everything turned out very nice. I prepped the food and my husband cooked. A very relaxing day and evening. 


My dog, Sophie had a puppy 2 weeks ago. She had only one and for that I am glad. The puppy's name is Bella and she is beautiful. The vet didn't give her surviving much hope at all. In fact he wanted to put her to sleep because she had a hernia. I couldn't believe it, how quick the vets in this state are to put pets to sleep. Of course I couldn't agree to that at all, so my husband and I have been taking turns bottle feeding her and sitting up with Sophie to make sure she nurses this pup. One week ago Bella weighed 11 ounces,had a hernia that was bulging out her right side and was a little weak. This week she has gained weight, does not take the bottle and is nursing constantly. Her little eyes are opened and she is scooting all over the place. I turned her health over to God and prayed for Him to bless this innocent little life with good health and he has. Bella is a little miracle puppy. Bella in Italian means beautiful and devoted to God I think her name is appropiate. 


 Here in Florida we are having some beautiful weather which is helping my level of pain. I am becoming quite unsteady on my feet so I broke down and bought a nice wood cane made out of cherrywood. I figure it is better to use the cane instead of falling and breaking a bone. Last week I went to fill some scripts and was told ther is a problem with my insurance card. So I called the company and was told the billing department opted to stop having the bill deducted from my ssd and send me bills instead. Well, the department sent the bill to the wrong address and have been calling the wrong number. Here the person who took the change of address information in December 2007 was a foreigner,  spoke poor English and didn't bother to make the changes to my profile. So because of this person my insurance was terminated and I am now suffering. I take quite a few different very expensive narcotics as well as medications for heart and lung failure,osteoporosis, osteoarthritis and other medications for other problems. I am so upset. I am going to go thru withdrawl, and who knows what else . So I am praying that something good happens. If I would have know all this prior to the closing dates of enrollment I would have changed companies. At least I will soon be able to to join  AARP. I heard that is  good company to be with.


Well, my husband is home now so I am going to  close. I hope everyone is feeling as well as can be expected.


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8 years ago  ::  Oct 25, 2009 - 6:36PM #7
Lavender
Posts: 1,069

flsunshine,


I know exactly what you mean! (Although my hysterectomy took care of some of the pain.) Anyhow, I've got arthritis (in more than one joint, I might add.)  For some strange reason, cooler temps agree with me better; just not a really cold temp like 0°F.) Well, I hope to talk to you more!

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8 years ago  ::  Oct 25, 2009 - 6:43PM #8
Lavender
Posts: 1,069

fl, have you tried acupunture, gentle yoga, and massage? I know it's expensive, but I also know it'll help for more than 4-8 hours.

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7 years ago  ::  Oct 15, 2010 - 2:21AM #9
Bena97
Posts: 1

I can suggest about Hypnosis, since it has been used for pain relief for centuries, and even today is used in surgical procedures. Pain relief with hypnosis has been shown to work by lowering the brain's response to pain signals, and it is possible to learn how to manage your own pain quickly. Thats why I got hypnotherapy treatment.

Moderated by Beliefnet_community on Oct 16, 2010 - 12:15AM
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7 years ago  ::  Nov 06, 2010 - 1:07AM #10
Lowyatar
Posts: 60

Hello all,


I have Rheumatoid Arthritis and pain associated with the Gulf War Syndrome.  As these have progressed I have found that my coping skills concerning pain are almost nonexistent.  I take pain pills for it but unfortunately that is not doing the job anymore.  I have also developed tools and ways of performing physical actions while trying to decrease the pain of doing so.  But I am finding that I am not able to enjoy hobbies or activities the same or not at all anymore.  How are you coping with chronic and worsening pain without pain medication?

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