Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 Oh goodness! The REMERON was awful! awful. It totally wired me up. I started it last tuesday Oct 24. 30 mg. I was LITERALLY " up all night " . Blood pressure sky high! I was not really " jittery " , just " up " . Like I had already slept. And HEADACHE from hell. It was not a migrane. This was different. It seemed to circle around my ears and onto the bony parts of the back of my lower head. It felt like someone had pressure in my inner ear or something. Escruitating. And you feel like you are almost totally deaf. For sure. But I was determined. It caused my eyes to run and water yucky stuff, and I could not open them. Fused. Had to hold underwater. And I never really felt " depressed " before taking it. BUT, I felt so low and helpless/hopeless while taking it. Really strange, since it WAS SUPPOSE to be for depression! Ha. The pain of the FMS literally got worse and more vindictive. Really, if that is possible, it did. Go figure! So, I took this for the 6 days, then started the EFFEXOR. I made the decision to STOP the REMERON when I started EFFEXOR. All these meds I was instructed to take in the evening. The EFFEXOR wired me also! Why? So, I stayed up all night again! But I did note one thing. I would come to LIFE and ACTUALLY HAVE ENERGY at about 3 to 4 in the AFTERNOONS with just the EFFEXOR. So, I did not dose that evening. I waited until the next morning. Well low and behold, when I take the EFFEXOR in the mornings, and it no longer keeps me " up all night " , it keeps me up all DAY. I have a " low of energy " around 2 p.m. in afternoon, and take break for a couple of hours, and then cook supper. By time that is all done, it is close to bed time. I now sleep approximately 3-4 hours! Great for me! And best of all. Thank God... NO side effects. None what so ever. No weight gain (it seems). BAD NEWS, you still hurt like heck. NO, I repeat NO, NO, NO ease up of PAIN what so ever. This is a two edged sword... you FEEL like you have ENERGY... but almost hurt too bad to put that GOOD ENERGY to GOOD USE! (so near, yet so far!) This drug strickly gives you a higher " stamina " type of energy. Not to go jumping fences of course. But, you do not say, " I really need to do laundry... it can wait, I am too dead tired. " I now get up and say, " Get the clothes together, I am doing laundry. I need to get it done, I want to work in my garden later. " I hope you understand what I mean. If they can figure out how to control the PAIN with the " SHORT TERM ENEGRGY BOOST " that the EFFEXOR gives, then that will be a big step for FMS. The real test is this, I am leaving today for AL to visit my grandbabies. This usually leaves me in my daughters bed the whole time. I will see if I am able to FUNCTION this time. I will let you all know when I return. Susie Matsumura wrote: > I second this. > > Thanks, Susie. I'm glad you found this doctor and that he revealed his > > experience to you. Hope that you can form a good partnership with him > and > that he can help you. > > Are the medications working any better? > > > > > ----- Original Message ----- > From: " Jon " <apex@...> > < egroups> > Sent: Friday, November 03, 2000 8:40 AM > Subject: Re: [ ] A silent one comes to life > > > > I was very, very moved by this. I read, as you do, and we ALL do, > tons of > > e-mail, daily. > > > > But THIS one will forever stick in my mind. > > > > I know it sounds trite, and I apologize: but: Thanks for sharing > that. > > Really. > > > > Jon > > > > > > ----- Original Message ----- > > From: Headley <sheadley@...> > > < egroups> > > Sent: Friday, November 03, 2000 12:02 AM > > Subject: Re: [ ] A silent one comes to life > > > > > > > When I was in Dr. office last week, I started crying. He said, > " This is > > > not something that goes away. " I said, " But... " (boo hoo me) > " but... " > > > He said, " But what? Say it. " I said, " WHY ME, why did I get it, > what > > > did I do??? " > > > Then he got inches from my face, and eye to eye he focused on me > and > > > said, > > > " Why not you? " Then he went on to say, " Why my dear Mother? What > did > > > she DO to get this? I grew up watching what this does. That is > why I > > > went to Med. School. I wanted to help. I am 42 years old and saw > She > > > struggled with it for 35 years. " > > > > > > I think I got a wake up call! It is hard to imagine a doctor > being this > > > " close " to a situation. Makes you feel you are going to be > listened to > > > and understood. > > > So folks. I guess though he does write strange " directions " on how > to > > > take meds, it is safe to say that this Doctor just may be one in a > > > > million... and help me, because he KNOWS. He saw his Mom struggle > daily > > > with it. > > > So, I will not ask, " Why me? Why did I get it? What did I do? " > > > Susie > > > gambler4402@... wrote: > > > > > > > In a message dated 11/2/00 5:28:18 PM Eastern Standard Time, > > > > demarn@... writes: > > > > > > > > << > > > > Date: 11/2/00 5:28:18 PM Eastern Standard Time > > > > From: demarn@... ( & Elaine Holder) >> > > > > Hi Vegas, I'm gambler 4402@... I am encccourged by your > letter, It > > > > made > > > > me remember to thank God for my own health. Sometimes it's hard > to > > > > think we > > > > could be much worse off.We need to be thankful every day. There > is > > > > always one > > > > out there bearing a bigger cross than ours. Thank you again for > the > > > > reminder. > > > > I am fairly new to the site, but feel I know the members on > board. I > > > > will > > > > keep you in my prayers as I do all the others in the group. Take > care > > > > Judy > > > > from Indy > > > > > > eGroups Sponsor > > Our websites: http://rheumatoid.arthritis.freehosting.net/ > http://www.rasupport.webprovider.com/ > Change subscription options: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 Have a great trip and visit with your daughter and the grandbabies, Susie! Sorry the Remeron and Effexor have such terrible side-effects for you. Could it be that the side-effects could lessen after you have been on them awhile? Could it be, too, that their effectiveness will increase after they have had time to build up in your system? What did your doctor say about the situation? ----- Original Message ----- From: " Headley " <sheadley@...> < egroups> Sent: Friday, November 03, 2000 11:07 AM Subject: Re: [ ] Susie > Oh goodness! The REMERON was awful! awful. It totally wired me up. I > started it last tuesday Oct 24. 30 mg. I was LITERALLY " up all night " . > Blood pressure sky high! > I was not really " jittery " , just " up " . Like I had already slept. And > HEADACHE from hell. It was not a migrane. This was different. It seemed > to circle around my ears and onto the bony parts of the back of my lower > head. It felt like someone had pressure in my inner ear or something. > Escruitating. And you feel like you are almost totally deaf. For sure. > But I was determined. It caused my eyes to run and water yucky stuff, > and I could not open them. Fused. Had to hold underwater. And I never > really felt " depressed " before taking it. BUT, I felt so low and > helpless/hopeless while taking it. Really strange, since it WAS SUPPOSE > to be for depression! Ha. > The pain of the FMS literally got worse and more vindictive. Really, if > that is possible, it did. Go figure! > So, I took this for the 6 days, then started the EFFEXOR. > I made the decision to STOP the REMERON when I started EFFEXOR. > All these meds I was instructed to take in the evening. > The EFFEXOR wired me also! Why? So, I stayed up all night again! But I > did note one thing. I would come to LIFE and ACTUALLY HAVE ENERGY at > about 3 to 4 in the AFTERNOONS with just the EFFEXOR. So, I did not > dose that evening. > I waited until the next morning. Well low and behold, when I take the > EFFEXOR in the mornings, and it no longer keeps me " up all night " , it > keeps me up all DAY. I have a " low of energy " around 2 p.m. in > afternoon, and take break for a couple of hours, and then cook supper. > By time that is all done, it is close to bed time. > I now sleep approximately 3-4 hours! Great for me! > And best of all. Thank God... NO side effects. None what so ever. No > weight gain (it seems). > BAD NEWS, you still hurt like heck. NO, I repeat NO, NO, NO ease up of > PAIN what so ever. This is a two edged sword... you FEEL like you have > ENERGY... but almost hurt too bad to put that GOOD ENERGY to GOOD USE! > (so near, yet so far!) This drug strickly gives you a higher " stamina " > type of energy. Not to go jumping fences of course. But, you do not > say, " I really need to do laundry... it can wait, I am too dead tired. " > I now get up and say, " Get the clothes together, I am doing laundry. I > need to get it done, I want to work in my garden later. " > I hope you understand what I mean. > If they can figure out how to control the PAIN with the " SHORT TERM > ENEGRGY BOOST " that the EFFEXOR gives, then that will be a big step for > FMS. > The real test is this, I am leaving today for AL to visit my > grandbabies. This usually leaves me in my daughters bed the whole time. > I will see if I am able to FUNCTION this time. I will let you all know > when I return. > Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 Dear Susie: Hi, my name is . I read your email today and I am sorry you are having so much trouble. I guess we have all had times like that, when finding the right Doctor, the right treatment, and/or the right medicine, and etc. can be a pain in the butt. I hope you can find a Doctor that is more compassionate and helpful for your needs. All this can be better than what you are going through now, believe me please, I have been there too. If I am not mistaken, don't you live in or near ville, Fla? Maybe I have you mixed up with someone else, but if you do, the Mayo Clinic is in ville and that might be a better place for you to go to. Well, good luck. I wish you well. If I can be of help, please write to me at: Anjillah@... If you just want to talk or vent, I am willing to listen. Sincerely, Colletti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 Susie: It sounds as if you are really suffering with this illness, my friend, and I am so sorry to hear it. You have enough to deal with on a daily basis - I hope that the medications are of help to you and you begin feeling better soon. Know that my prayers are with you. Kathe in CA --- Elf <sheadley@...> wrote: > Carol, this is why I haven't written in a week or > so. Got it. > Mine turned into pneumonia. Have a terriffic Sinus > infection. Also got a > good bout of infected ears. Pain is understatement. > Taking Cipro with > pain killer that goes in ears for this. And so many > meds I don't know > what all they are. Don't really care right now, > either. > I have been taking antibiotic shots, and also > antibiotics by mouth > again. > I also have a bad UTI. But, according to the ER > clinic, the UTI is a > combination of having the infections of ear/sinus > and also because of > the MS. Being as I am one with MS with among other > things, have trouble > with bladder/bowel. I can not empty bladder. > So I am not feeling the greatest. And all this has > thrown arthritis into > a rage. My knees are huge and hurt so bad. > Actually...EVERY joint is > swelled now. Hopefully, that will subside as I get > better. > Ok...am up taking medicine right now. I am just > reading the posts for > awhile...and then I crawl back into my cave and die > until next > medication time. > Susie > > Carol wrote: > > > > http://www.11alive.com/life/life_article.asp?storyid=27024 > > > > There are similar outbreaks in NH, TX, AL. IN, KY, > MS, KY, TN, IL, IA, > > > > AR, MO, IA, NC, NY > > > > I found this out by doing a Google news search, > using " Flu closing > > school " . It looks like it's all been since the > 15th of January. > > , > > a: Is this something that happens often? I > don't think I've ever > > > > heard of a school closing because of the flu here, > but then again I > > live > > in Floirida. > > > > I only started looking because and > got sick, then Suzi; > > > > then my mom and (all in GA). My Mom told me > about the school > > closings and I got curious. My brother had > mentioned to me that he > > thought the way this was moving through the > community was curious > > (like > > the cruise ships - he thinks terrorism), I thought > he was being silly. > > > > It is weird, though. > > > > Anyway, I bring this up so that everyone living in > the SE and Midwest > > (and NY and NH) is extra cautious right now. > Also, prayers for my > > Mom > > (Irene) and would really be appreciated. > She's pretty sick, and > > she's wheezing really badly. He's better able to > fight it, but I'm > > worried about both of them. They're going to the > doctor this > > afternoon, > > and my if my mom goes to the doctor, you KNOW > she's sick. > > > > Love to all, > > Carol > > > > > > > > Carol > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2003 Report Share Posted April 14, 2003 Yes Judi, hers are in same places as yours. The last she had off several months ago was on her thigh. It caused her so much pain they had her on STRONG pain meds afterwards. She has MANY all the time. They started when she was in her late Teens. Now she has too many to even keep up with! (Thank goodness she says that they aren't " noticable " by people, as they are under the skin and clothes cover the " lumpiness " of them) She has one in particular right now, that is probably size of a quarter that came up fast, and it is close to her Kidney ... the bad side is, her KIDNEY is giving her trouble lately. So she is worried enough about this one, that the doctor is doing a scan next week to see if this one has grown inside also. She is 29. A little over a year ago they were going to do Hip Replacement on her, as the arthritis like pain from her hips were so bad. She looses lots of sleep over her hip pain all the time. They did all the scoping with MRI, etc. And the doctor was shocked at how bad her hips were for her age. Well, when they scheduled the surgery for replacement (she needs it badly they say) the nurse happened to ask her " How many children do you have? " And Ami told her, NONE yet, why? Then the nurse freeked! She went out and got doctor. He came back and said NO SURGERY of the type they had to do, until she had a child (if they were planning on having any.) So they have the surgery on hold. She also has Degenerative Disc Disease (as I do) and it is pretty bad. With a few disc already herniated. But like me, she tests " neg. " for arthritis! So assuming it is Sero neg. ra. She had some bad lumps taken off her forarm last year also. The scars were over an inch long, so that should tell you how big those got. They interfered with her typing work (in the Ortho office she works in) she is a coder and Insurance. The Doctors who she works for had her a new " super chair " ordered to help her back, and also a new desk with the computer set at a proper height to help her. (LUCKY GIRL!) I feel for you Judi! I know what you are going through with this. It is like just that " last straw " that it deals you! Ami agonizes with hers at times they get so big/bad. She also has one that came up close to her spine that has her worried now. (That one and the one by kidney). I am going to send her this INFORMATION on DERCUM's, and let her see what she thinks. I am so glad I saw your post! Because I had no idea it was this " serious " , until I read the stuff on it after reading your post. I talked to her this afternoon and told her somewhat about it, and she is really interested, as the surgeon she sees says, " Oh, they aren't nothing...harmless. " You know the speech! Ami is a very outspoken person. I gurantee she will be one who PRINTS and BRINGS copies to the doctor next week! Keep me informed about what goes on with yours, please. Susie mormar46 wrote: > Susie, > > How old is your daughter? Sorry she has suffered too. It has only > been in the past year that they have been bothersome to me, but > getting worse and I can watch new ones grow ever day. The biggest > ones are on my back, near my waist, so I wear loose clothes to > compensate. Had one removed last year that was as big as a Jumbo > egg. The ones on the backs of my upper arms are the most sensitive, > and the ones on my upper thighs. You might want to check the net for > Dercum's and see if she has any of the other symptoms--fatigue, RA- > like symptoms affecting hips, tailbone, wrists, elbows; headaches, > clumsiness in the hands (I have CP and thought it was just that.) I > am taking a sheaf of papers with me to the IU med center May 12 and > see what they think. I just hope this isn't bogus. > > Peace and grace, > Judi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2003 Report Share Posted April 15, 2003 Hi Susie, Did you go to the sites that posted? There are literally hundreds of sites, and I wonder why the surgeon didn't know of this before, or your daughter's doctors--it has apparently been around a long time. They do mention obesity as a factor, and I have been overweight for many years, but this all surfaced AFTER I lost a lot of weight (70 lbs. last year.) Maybe the fat was just hiding them? One article said that Dercum's can RESULT in weight gain, and maybe thats why I have gained 20 lb. this last 6 months, despite being on a very healthy eating program. Of course I was on Pred. for awhile, and also on Elavil which causes sugar cravings. I had a large lipoma removed last year from my back, and now there are a bunch of smaller ones where the old one was. I had one removed from my armpit but that doctor has been removed from the hospital, and I'm not sure he was correct in telling me it was a sebaceous cyst. He was the one who did my lumpectomy last year. My old pcp would only tell me the lumps were " nothing--don't worry about them. " I told my new pcp this, and also told him " please tell me what they are and WHY they are nothing, and then maybe I'll quit worrying. " He laughed and said he refused to make light of any situation. Hopefully your daughter will find out something before I will, as I don't go see the IU doctors until May 12. Until then I am off the Bextra I was taking, and tetracycline, but I don't think they were helping anyway. My best relief comes from Tylenol PM and that's just at night, but at least I am sleeping better. The only way I differ from the profile, is that I am pretty sure I don't have the mental problems they list, other than occasionally being depressed, but there has been a great deal of stress in my life the past year so anyone could get squirrely! Keep me posted! Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 Susie : I thought it was Louise that was being tested for MS....and where is she? How is the new product working on your hair...and I was going to tell you I use a knife instead of scissors.....just run it under the hair on the vaccum roller......remember when you used to be able to sell your hair for the use in real hair wigs? Where did those places go? I would have enough weekly to have mad money.....LOL ...Did you ever see your new doc? And if so what was the plan of action? Oh well inquiring minds and all hugs Kathi in OK --- Elf <sheadley@...> wrote: > YES! Take it... please! haha! > Like I said, I just always assumed it was another > " quirk " of the MS! And > I have SO MANY " unreal " complaints... that ARE > real... till I don't even > bother to bring to attention to doctor! Though, a > BIG DENT would be hard > for a Doctor to look at and say, " I don't see it, it > must be in your > HEAD! " > Ha! Or.... maybe he would! > Wasn't someone on this list also being tested for > MS? It wasn't you was > it? > Elf > > Jan Tully wrote: > > > Thank you, Susie. Now I don't feel so stupid > asking the question. I > > had put it off because I had never heard of such a > thing before. I > > think actually, with your description of where > your's was is probably > > more accurate than mine. I think it did the > same thing, especially > > the angle. My appointment with the Rhuemy is on > the 5th and I > > definitely will mention it to her. With your > permission, may I take > > your post to show her? > > > > Thanks again, > > Jan +/:=) > > > > Elf <sheadley@...> wrote: > > Jan, now THAT is weird! Mine did the same...only > NOT ankle. It was to > > the side-front of my lower leg AVOVE the ankle. It > ran at an " angle " > > from side to side, yet at an angle, if that makes > sense! It is almost > > as > > if my leg in that area is STONE HARD. After it > happens in " spots " , the > > > > " stone hard " look never goes away, but the dent > does. Bummer. > > I have the spasams and spastic muscles and tendons > draw up due to my > > MS. > > So I just always thought the MS was doing mine. > > But now that I read your post, I guess I need to > point it out to my > > doctor! > > But YES... I do know what you are talking about. > > It don't look " real " , does it? It is the strangest > looking thing I > > ever > > saw. " Dent lady " . Yes... I am " dent lady " !!! You > remember those > > " stocking dolls " they use to make when the Cabbage > patch kids were so > > popular? People would make " home made " real > babies. Took old panty > > hose, > > and made the " sculpted faces " . I feel like one of > those! Like I took a > > > > needle and thread and " sculpted " a " dent " here or > there! > > It does not stay like this. It comes and lasts a > day or so then > > goes... > > may come back within a couple weeks, off and on > like this all the > > time, > > in different spots. > > I have also noted the last few weeks... my RIGHT > arm is doing this. > > Not > > the inside of my lower arm...but just above my > wrist about 4 or 5 > > inches... between my elbow and wrist. On the " tan > part " of my arm, not > > > > the inside. > > Now THAT looks really strange! And like you said, > looks like TO THE > > BONE. I wonder where the muscle and stuff in my > arm " goes " when the > > " dent " happens. You know, where is it " displaced > to " ? > > Ha! Boy... our bodies come up with some " good > ones " don't they! > > Susie > > > > Jan Tully wrote: > > > > > I had something strange happen a few nights ago > and wonder if > > > anything similar has occurred to any one in the > group. > > > > > > I was stretched out on the couch reading when my > ankle began to > > throb > > > causing me to glance down at it. What I saw > right at the ankle was > > > weird. It looked like a whole cup of flesh had > been taken out and I > > > > > could actually put my fist in the hole. It > seemed to go straight to > > > > > the bone. Brought to mind cancer surviver after > they had had a > > large > > > tumor removed. It was red and burning. I don't > even know how long > > it > > > had been in that situation. It was too late to > call anyone to get > > an > > > opinion so decided to watch it. I did some > walking around and > > finally > > > after an hour or so, it disappeared, filling in > the cavity again. > > It > > > remained red through the next morning. It is > very tender to the > > touch > > > and smarts even right now when it is touched. > My feet were swollen > > > and puffy the next day but don't know if that > had any bearing on > > what > > > had taken place. Please don't tell me I am > having hallucinations. > > In > > > a way it was humorous.........brought to > mind........Meryl Streep > > and > > > Goldie Hawn in " Death Becomes Her. " > > > > > > Anybody with an input as to what it might be? > > > > > > Thanks Jan +/:=) > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2003 Report Share Posted May 18, 2003 So far it is working! At least, with each washing and brushing there is MINIMUM hair in the drain, AND in the brush! I think the combination of trimming and the " stuff " is working somewhat. It even FEELS soft, not as brittle. Yesterday I did NOT use anything, and it looked like " wild lady " and wire. So I put it on last night...woke up it was " tame " somewhat again! This stuff is not " greasy " ... it just seems to work on breakage for some reason. And it isn't FOR breakage. The lady at Roffler's said they just 'noticed' it HELPED the breakage for some of the clients. So far, so good! I couldn't remember who was being tested for the MS either. But I would like to know how all the tests turned out. I have been really curious about it. I hate my memory so bad! Hey, Kathi... I did have a hairdresser my mom brought me to, twice when I was growing up... my hair grew SO fast. And the lady said if she could have it for the " wig thing " to sell. Pitty... as I recall, we wern't offered any money! She told my mom that blonde hair was in demand. Susie Kathi in OK wrote: > Susie : I thought it was Louise that was being tested > for MS....and where is she? How is the new product > working on your hair...and I was going to tell you I > use a knife instead of scissors.....just run it under > the hair on the vaccum roller......remember when you > used to be able to sell your hair for the use in real > hair wigs? Where did those places go? I would have > enough weekly to have mad money.....LOL ...Did you > ever see your new doc? And if so what was the plan of > action? Oh well inquiring minds and all hugs Kathi in Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Dear Susie, I am sorry to hear that you are feeling so bad. Are your docs upping your meds or changing them since they feel that you are now in progressive? How are your ponds doing? Our largest Koi died a few weeks ago; we don't know why. I will keep you in my prayers and ask the angels to walk beside you. Hugs to you, Iris --- Elf <sheadley@...> wrote: > Kathi! I am so glad you are posting again! I was SO WORRIED for you! I > think of you daily. I am not much of a " talker " or writing personally... > but I do think of you all the time. > This is an effort for me to write this. I am still not doing well. The > " relapses " don't have remitting anymore. Just seems to stay in a level > " relapse " now for me. Not good. But they did warn me last year that it > " appeared " the Relapsing Remiting MS was " going into " Progressive. > Bummer. But hey... I CAN still walk. So that is my " up side " . > Just things that the MS has " taken away " are not righting themselves > like the use to. Just a lingering of the things the damage has taken > don't get better anymore. > But hopefully it WILL get better when I start the new med within the > next couple of weeks. A daily shot. Which I do not look forward to! > I am so HAPPY to see your " smiling posts " again! You always inspiire me! > > Susiie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 As a matter > of fact to this very day, I've never had any problem whatsoever with my GB > removal. Now, I do have poop problems, which my RN friend calls a bile dump > syndrome or something. I can't remember the name. > > Hope this helps your understanding. I always felt when I started cleansing > that I would take a day at a time. No one knows what's going to happen to them > at any time. > > Take care, > Susie Susie, can you explain " bile dump syndrome or something " ? Thanks, Leah Quote Link to comment Share on other sites More sharing options...
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