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Hi, Gail
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annette030 posted:
Just writing to see how you are feeling?

I saw a rheumy yesterday about some bumps on my fingers, of course he said he had no idea what they were. But he did a very thorough history and physical exam. Any how he isn't worried about cancer or anything terrible, but got xrays that he will go over with me in Aug. when I go back to see him. He is going out of the country for a month meanwhile. I could have gone in to see him just before he left at 8 AM, yuck!! I am just not a morning person, lol. I feel better knowing that at least I don't have to worry.

I hope all is going well with you since your surgery. I am thinking of you.

Hugs, Annette
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findingpeacewithpain responded:
Hi annette030,
I am glad to hear your visit with the doc was ok. At least there is one less thing to worry about. Do the bumps hurt? Do you see a rheumatologist because you have arthritis already? I am not quite sure what your pain is like that you have to manage....if I recall it is fibromyalsia right? Sorry I can't remember if you have already shared....I get a little caught up in my own stuff.
I haven't seen a rhumetologist yet. I would like to. The private pain doc however did refer me to the UBC bladder clinic to see if my bladder issues are neurological. He also referred me to the Spinal Cord Clinic in Vancouver to a doc that he thinks will be able to help me if indeed it is tethered cord. At least that is some movement in the right direction and it is through the public system so it won't be 600 dollars an hour. It is just going to be a year away....
I hope you have a nice relaxing weekend. It might even be sunny up here in Vancouver this weekend. I always feel a bit better when the sun is shining. I have had 3 of the worse days in a while. My son has t-ball today and hubby is working so I am going to have to suck it up.Take good care. Talk again soon.
Lisa
 
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kerrplunked responded:
Hola Annette, you are so sweet to check up on Gail who has been through so much lately. It's comforting to see so much compassion and support.
I'm wondering about the bumps on your hand? Of course you are stating that you are uncertain, but could you describe them? Swelling? Tiny bubbles present?
I would just like to offer my experience, rather than a sound medical opinion. The field of medicine fascinates me; that is all. And I am a proven Geek.
I will be seeing a rheumy here soon in order to detail my physical ailments and rule out Fibro.
Well, Best wishes to you and Gail!
I hope you are pain-less, -Kerr
 
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gailb54 responded:
Hi Annette,

You're so thoughtful. I'm fine and mending well. But first, I'm really concerned about you. Did you go see the rheumy with any idea about what the bumps might be? It would seem you must have tried to figure it out... do they hurt? I'm guessing that they aren't anything a dermatologist would diagnose or you would have seen one instead of the rheumy. Do you feel very concerned? I'm so sorry, Annette. It seems sometimes that things pile up on one person while so many suffer very little and it's something that's very hard to understand. I'm so sorry. I sure hope that they will somehow resolve without causing more pain. How long have you had them? I'm sorry for the questions, but am truly concerned.

I'm not a morning person, either! The one time when I would have preferred early morning was for surgery but of course they didn't have early openings! I really am fine. The incision is only about 4" and really the pain has been much less than the pain I had before surgery. You'll be interested to know that the actual toe pain is gone, absolutely gone, in the small toe where I felt like I was being tortured. I still have burning in the remaining toes which seemed worse about 3 days after surgery but calmed down quickly and is not bad at all.

When I say "not bad at all" I'm describing what I feel now, still on all the medications that I've been taking for some time. My hope is to see my pain doctor after I get back home in a few days and wean off some of the meds, if possible. Right now I'm very hopeful that I can do that and maintain a level of pain control that will be fine with less meds, but this is still a bit of a "fluid" situation.

I know that surgery can cause RSD to spread and there is no evidence of that one week post-surgery, but you never know. I do feel hopeful that now I will be able to get around more and have some of my life back which was my hope. I didn't expect to be pain-free, but I'm enough better that I'm SO thankful I had the surgery and only wish I'd done it 2 1/2 years ago when the first physician suggested it. Oh well, I'm thankful now! Do you think I'll get a discount on pedicures?
:)

Thanks for asking about me. Is your brother still doing well with his recovery? I'll be thinking about you, too, and hoping that the bumps will not be anything too bad. Do you have any thoughts on it? Do you think you should see another physician while the one you saw is out of the country? I wish I knew something to suggest. Have the bumps affected your ability to use your fingers? I'll stop asking questions now since I have no idea what to ask, but sure hope this will not lead to additional pain for you. Let us all know.

I hope you don't mind, but I'll pray for you. And, thanks, Annette.

hugs,
gail
 
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annette030 replied to findingpeacewithpain's response:
Yes, I do have FMS. My pcp takes care of me for now. The rheumy was a new doctor for me, my pcp just wanted me to see a specialist about these bumps. They are not in the joints, but alongside the bone between the last two joints of my fingers. They don't really hurt, just when one of them gets really big, it feels tight. But, it has shrunk down again so all is well. My pcp said I could go see a hand surgeon who would probably want to cut them out and biopsy them, I declined. So she suggested a rheumatologist. This guy is the boss of the rheumatology clinic at a big hospital with a good reputation so I think I am in good hands.

He did say it looked like I had very minor OA in the end joints of my fingers of the right hand. News to me, lol. No pain that I have noticed, and no swelling that I can see, but he felt he could see some minor swelling.

You are talking about the Canadian Vancouver, right? We have a Vancouver too, here in Washington State just north of us.

My son played a year of T-ball when he was a little kid. He really didn't like it but I made him finish out the season. He liked playing ball in the street with the neighborhood kids, baseball, basketball, football. He is in his 30s now and has a 4 year old of his own.

I have found that when I suck it up and go somewhere, even if I didn't feel like it, I do get benefit from it. I have a good time and get out of the house. I do plan rest and recovery days afterwards to pay for the good times, but it is worth it.

I mowed the lawn today and pulled some weeds, just before it started raining again, and again, and again, lol. We haven't seen much sun here yet this year. You have a good weekend.

Take care, Annette
 
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annette030 replied to gailb54's response:
Gail,

Please don't worry about my fingers. The rheumy said it wasn't anything he had ever seen before. The placement of the bumps are odd, as they are between the last two joints on the fingers, not the joints themselves. The first one I noticed was xrayed 2 years ago and it didn't show anything bad. My pcp suggested I see someone now because I complained to her that I had several bumps now including one on my wrist over my radial pulse point. She said I could go see a hand surgeon, and he would do surgery and remove them, I passed on that since they don't bother me that much right now. So, she suggested a rheumy to see if it was some form of arthritis.

This new guy, who I liked and seemed very thorough, had me get xrays to compare with the old one and I will go back and see him in August when he gets home again. He said he wasn't that concerned as they don't cause any pain, and the main one has actually gotten smaller again since I made the appt. to see him a month ago. He said if I wanted to I could see a hand surgeon and have them all biopsied just to ease my mind. I declined as I am not that worried, lol.

I am so glad your recovery is going well. Are you putting weight on that foot yet? A guy I know actually said he had to learn to walk again after having his little toe amputated. He said his doctor told him that the little toe sends pressure messages to your brain that tell your brain what position your body is in, like little outriggers. He described it as very strange, but once he got going, he never missed it at all. I think you should get a discount when you have a pedicure, lol, it is only fair.

I am not sure, but I think it has been my experience as a nurse that when RSD spreads due to a surgery it happens right away, maybe Transcriber52 knows more about it. She is a neuro nuse. I think that you are not having increased pain now is a very good sign. Give yourself time to get back on your feet, then you can talk to your doctor about a weaning schedule for your meds. Go slow is my only advice for that.

My brother is doing well, he is sober and in Santa Fe. He has had some medical stuff taken care of, and a tooth pulled. He found a good therapist that he really likes. The fact that he is doing well, really lifts my spirits.

My son was approved for a 90% medical disability from his time in the Marines in Iraq and Afghanistan, he was at a 60%, but they bumped it up due to a traumatic brain injury that causes headaches and ringing in one ear at times. That happened when an RPG was shot into his mess hall, he was walking around, but had no idea what was going on. He basically had his bell rung. Fortunately, it was all documented in his military medical file. This rating improves his benefits considerably and covers a lot of his medical care through the VA. They have great private insurance now, but he likes the VA near him and uses it because they seem to be more sensitive to his injuries in the past. They just have more experience with such things.

I will wait until this guy gets home again, but if they get worse and start hurting or anything like that, I will see someone. At this point, they don't hurt, and don't affect my ability to use my hand, they are just there, and it bugs me not to have figured it out myself.

Anyhow, I am fine. I don't mind a bit if you pray for me, every little bit helps as far as I am concerned.

Hugs, Annette
 
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gailb54 replied to annette030's response:
Annette,

I'm so glad that you really don't seem too concerned about the bumps. That puts my mind to ease some. That's so strange that the doctor had no idea. If you find out what they are, please let me know.

I'm actually putting "full" weight on my foot, a bit cautiously, and having no problems at all with walking. That really surprises me about the person you knew who had so much trouble walking. My pain doctor warned me a year ago about how much the little toe is really needed for balance, but I'm just not seeing it. I was looking at shoes online tonight and wondering what styles I might have trouble wearing, but it was a blast because I haven't been able to wear any shoes really for 3 years now. When I did wear my Crocs, which were the only thing I found that I could tolerate at all, they still caused pain. So, I'm hopeful to be able to get back in some boots this fall!

I knew about your son's service but did not realize that he had been injured. I'm so sorry. I know you're proud of him, as you should be, for what he did for our country. Things are so rough right now in Afghanistan, and I'm glad your son survived. It's good to hear that he seems to be getting good treatment, too, because he surely deserves it. One thing I find absolutely intolerable is hearing about veterans who are mistreated. I just wish you could see him more.

I'm glad your brother is still doing well. He's in a beautiful place. I'm sure it makes you happy and am so glad. Let me know sometime how he's doing again.

I'm very encouraged about the RSD and agree that it would probably become evident pretty soon after surgery. I guess I just want to be happy but since I still have burning, I don't want to throw a party just yet. I'm very happy, though, about the results. I just wish I could get over a fatigue and weakness that I have and anemia which we don't yet know the cause of. Right now it's very important for me to take it one day at a time because I am fighting depression, too. I think the reduction in pain will help me get through whatever else I have to face next. I'm a little scared of the process of weaning off the meds. Surely my doctor will help me do it slowly. Surely.

I'm glad you aren't too worried. It was so nice to see your post to me this morning. Thanks for caring. It's been so nice to have the support of you and others here this week.

hugs,
gail
 
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annette030 replied to gailb54's response:
My son did not consider himself disabled as he manages to work full time training Marines for combat with a civilian contractor. When he got out, I made sure he documented everything that went wrong with his body during his exit physical just to be on the safe side. That got him a 60% rating, but one of the doctors at the VA were he goes put the symptoms together as to his headaches, ringing in one ear and partial hearing loss as a traumatic brain injury (TBI) from the rocket attack and that bumped him up to 90%. The best thing is it insures that both his boys will get their tuition paid at Calif. State colleges and universities. His monthly benefit also gets bumped up so they are looking for a house to buy. I am very proud of his service, but I don't talk about his personal stuff much.

What is frustrating is that he was in the original invasion in Afghanistan and I have photos of him in certain cities after the US and the Northern Alliance ran the Taliban/Al Quida out, and now the US is fighting to win them back AGAIN from the Taliban.

Don't sweat the fatigue yet, I complained to my surgeon after 4 weeks that I was just exhausted and didn't know how I was going to go back to work at 6 weeks. He explained that some of the sedatives and anesthesia drugs they use in surgery attached to my fat cells, and then are released slowly over 5-6 weeks, and they contributed to me feeling that way. He said I would feel better after six weeks post op and I did, it was like night and day. Were you anemic before the surgery? That will also make you feel tired out.

My husband was on methadone and oxycodone/APAP prior to his THR, the doctor let me taper him off the methadone as soon as he wanted to get off, a week or so after surgery. I did it in about a month or 6 weeks. He said he never felt a thing.

Please don't worry about my hand, I am not worried at all, I shouldn't have said anything.

Hugs, Annette
 
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annette030 replied to kerrplunked's response:
Hi, Kerr

They are just small mobile nodes between the joints. I am really no worried about them, I saw a rheumy and had some xrays done, we will see what they show.

They don't cause any pain, so don't worry.

Take care, Annette
 
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gailb54 replied to annette030's response:
Hi Annette,

I'm glad your son is still able to be so active. Oh, my heart goes out to the vets who are suffering with different things as a result of the war and I hope our country will take good care of them. And, it's wonderful to know that about your son's boys going college! That's a great help. I watch too much news and get upset about it all and can't imagine how much more "real" the war is to you. I don't know what to think anymore.

Thanks for telling me that about the sedatives/anesthesia... I had no idea. That's good to know. I didn't mention how I was feeling (other than my foot) to my surgeon but I did find out about a month ago that I was anemic and was put on some supplements. So, hopefully it will help soon.

I wanted to tell you that I got my stitches out today and all is doing well. I had the best day in YEARS! I went to the mall with my sister-in-law and 2 nieces and it was so nice. I hadn't been to a mall in 4 years. Then, tonight I went swimming with my 10-year-old niece and had a blast. We had fights with the water guns and it was the most fun I had had in years. And, now I have plans to do some cooking/baking with my 15-year-old niece tomorrow. Just 6 weeks ago I truly wanted to die. It goes to show that you never know. I can't believe it.

When I saw the surgeon today he told me that he had talked to the anesthesiologist that did my surgery to tell him I was doing well. They seem really excited about this, which is nice. The anesthesiologist recommended that I stay on the Neurontin for a year, which I think my pain doctor will also think is a good idea. My pain doctor has told me that there "might" be some preventative help regarding the RSD by taking either Lyrica or Neurontin, and I might still need it, so I just thought that was interesting.

I hope it's not awful to be here and say how good I feel when so many suffer just in terrible pain 24/7. I don't know what's in my future regarding the pain or the RSD, but I just feel so grateful today and had to tell you about the mall and swimming. Thanks for the encouragement. If I'm able to get off the other pain meds, I might end up moaning and groaning here but it does help to know that your hubby did so well with it. I'm pretty sure I'm a wimp compared to him, though! Thanks, Annette.

hugs,
gail
 
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Caprice_WebMD_Staff replied to gailb54's response:
I just wanted to say, Gail, that it's ALWAYS good to hear when someone has an ease in their pain. I'm very happy for you! :-)
Treat people as if they were what they ought to be, and you'll help them to become what they are capable of becoming. ~Goethe
 
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gailb54 replied to Caprice_WebMD_Staff's response:
Hi Caprice,

Thank you so much. I just wish I knew how everyone else could get the relief from their pain that is so needed. Thanks for writing and telling me this. I hope you're hanging in there OK at least. Caprice, thanks for the encouragement both recently in this and for a long time now.

Have a good summer!
gail
 
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annette030 replied to gailb54's response:
Hi, Gail

I am SO glad to hear that things are going so well. Don't overdo it and end up being sorry later.

I would agree with the anesthesiologist about staying on Neurontin as a preventative to keep the RSD away. It intuitively sounds right. I guess there is not much medical research in this area yet, maybe you will be the case subject of an article for the journals?

It is wonderful to have you here in pain or not, preferably not, because you can teach newer people so much. You have been through a lot so far, and can give hope and inspiration to others with RSD or any chronic pain condition.

Hugs, Annette
 
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trying2findjoy replied to annette030's response:

Just got back online this AM and I am so happy to read these posts...... Gail, so wonderful to hear that you also have had a great response to the amputation. I have maintained all along that I feel like a new person (that I actually want to live again!) but having said that I still am on some meds to control the RSD but nothing like pre-amputation! Sounds like you have experienced the same result.

Keep the positive thoughts and enjoy each day.......


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