Sharon...RE: Jackie........RE: High pain days

[Guest guest]

Hi Sharon,……Steve sees his Dr. on a regular basis, maybe every 3 months. But I think he downplays how he really feels, and they get to talking about “other†non-medical stuff. It just seems to me his Dr. isn’t taking Steve’s pain as seriously as I think he should be. And his memory problems. Now he is getting bruises that he doesn’t remember how he got, and I know unexplained bruising can be a symptom of FM, but I’d hate for them to just keep blaming everything on FM. There’s a type of leukemia that develops over time that has some of his symptoms too, and I’m scared these Dr’s he sees might not think to check him for anything more. I wish I could go with him to his appts. But one office isn’t handicapped assessable. Go figure on that one? Steve doesn’t have any short or long term disability on the plan he chose for us. There’s open enrollment coming up in Nov, and I’m going to see if there’s a different plan that has it. Not sure if  I saw the post about supplements? He does take a multivitamin, and his D levels are okay. My leg pain comes and goes too. Right now it isn’t as bad as it was. Steve can massage them and it helps. He has to be extra gentle tho because the insides are the worse and any hard pressure sends me thru the roof. The insides are worse for the skin dryness too. The rest of the legs are smooth as a baby’s butt. So my dry patches are only in certain areas and have pain associated with them. Thanks for the hugs, glad you can take the pred to help you. I can’t take it because it affects my Dercums lumps and makes them grow like crazy. LLove, Jackie From: MSersLife [mailto:MSersLife ] On Behalf Of SharonSent: Monday, August 08, 2011 7:40 PMTo: MSersLife Subject: Jackie........RE: High pain days When was the last time Steve saw his doctor? I think the doctor should know about Steve's memory problems. Does Steve have short term and long term disability through his employer? Did you see the supplement type treatment for fibro that Anne mentioned? In 2007 I had about a year of the most terrible leg pain during the night. My neuro did a nerve conduction on my legs and said nothing showed up on the test and the pain was therefore from MS. In response to my question he said he didn't think the pain would ever leave me. The pain was so bad I would wake up during the night, crying. I dreamed about suicide. It was horrible. Then it went away! I think the pain was from a lesion that appeared and then disappeared, or moved. No pain medication would touch the leg pain. sending you hugs! SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Monday, August 8, 2011 4:35 PMSubject: Sharon.....RE: High pain days Hi Sharon,…….its hard to tell because when I sit I still have pain thru-out the day, but I keep my mind occupied, so diversion helps. But when I lay down its a lot worse. This has just started affecting me like this within the last year. So I imagine whatever is causing it has progressed up a level or 2. I am taking more pain meds now, and that still only takes the edge off. They make me want to sleep more, so I am now taking 2 naps a day which I do not like at all. I’ve always hated sleeping anyhow unless I was super tired and it usually took a lot to make me that tired. I agree about the roll in shower. Steve and I have talked about it, and I guess I’m going to have to be the one to make it happen if I want it. I think his pain meds are affecting his brain, honestly not to be mean, but his memory is really really bad, and its either from the meds or his illnesses are affecting him that way. He has Lupus and FM. I have to always check to see if he has done something I’ve mentioned needs to be done, and he says okay and then forgets. He says its all he can do to get thru the work day and keep his job. So I give him a lot of leeway because I know how it can be. His memory stuff is worse than mine ever was. I just hope its not something else. He’s going to be 63 in Nov. and I know that a lot of illnesses can start showing up in your 60’s. he’s a Vietnam vet with exposure to agent orange, and 30 years later illnesses are showing up. I worry about that too. Hugs, Jackie From: MSersLife [mailto:MSersLife ] On Behalf Of SharonSent: Sunday, August 07, 2011 2:17 PMTo: MSersLife Subject: Re: High pain days I am so sorry hear of the high pain you are having Jackie. You mentioned the leg pain at night. Is that different pain than the daytime pain? It would be wonderful if you could remodel your bathroom! My nephew, Greg, has muscular dystrophy. He has a large bathroom with a roll-in shower. He has a special wheelchair just for the shower so he is able to just roll on in and shower when he wants to.... Maybe someday you can have the same set-up. hugs SharonThis email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. To: MSersLife Sent: Sunday, August 7, 2011 12:50 AMSubject: High pain days Hi friends,…I have been having so much pain all thru-out my body for some time now. Since I have several illnesses its hard to know which one its coming from. I think it might be mostly from the RSD, because I have quite a bit of swelling and skin pain in my right leg/foot and that is typical for some types of RSD. [reflex sympathetic dystrophy]. My left leg and thigh use to be my good side but the thigh muscle [quadriceps] seems to be weakening and the more I use it the more painful and weak it gets. This is a new symptom for me. I noticed it a few weeks ago how hard it was to walk back from the fridge to my desk and make it into my chair. I hang onto a walker so I have some support. But man it was really painful. I also have a disease that develops painful lumps under my skin and connective tissue and I am wondering if they are growing deeper to affect the muscles. That happens as well as they can wrap around nerves too. See what I mean about not knowing what’s what? The Dr’s don’t know either which illness is causing which symptoms. If it can be tested then they would know. This is just so frustrating to me. I can be lying in bed and the pain in both legs all the way from my feet to my thighs/pelvic area is aching so bad I can’t sleep. I’ve now been sleeping during the day at my desk, so that makes 2 naps now. You would think laying down would relieve the pain, but it seems to be worse then. And not the parts that I’m lying on. I can only lay on my back now, and it’s the front of my body that hurts the worse. Go figure. Our weather has been very high humidity and low pressure, and not very warm but the humidity bothers me quite a bit. Tonight I can smell the swamp like smell from the lake and expect “Yoda†to walk thru my door any minute…..lol…inject a little humor here! J [Yoda is the little green creature from the movie Star Wars for those not familiar with him, and he came from a swamp]One thing that I was wondering, do any of you have any skin involvement that creates extremely dry skin? My dr. said it was Icthymotosis [sp], or something like that. It’s only in areas that are the most painful, and all the moisturizing doesn’t seem to penetrate. So I guess that’s my update. I just don’t know what I will do if I lose my ability to walk altogether. Steve can take an early retirement, but the SS would be peanuts. L the pains in my legs are so bad I can’t even get into the shower we had modified with grab bars, to take a shower. A bath tub is out of the question. Too bad they don’t make people washes like car washes! Wouldn’t that be FUN! Lol..Love and hugs to all, Jackie