My pain is driving me crazy

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2784
   Posted 7/28/2013 11:47 PM (GMT -6)   
Hey all:

Have to say that I've really not improved since my cataract surgery on June 17th. I'm in the middle of a huge flare up and I'm a total mess.

I was in the Dr's office on Friday for acute care and he did nothing other than order me x-rays of my foot. Apparently, I have several bone spurs on my left foot and that may be causing some of the pain in that foot. I had some very stressful stuff go on last week and I've finally crashed so to speak. Today, my temp was 103.5 when I woke up from a nap. It's now 101.3, my joints feel like they are on fire.

The rest of my joints ache and my calf muscles hurt like a 9/10. Was worried my blood was to thick and I have a blood clot. Just checked my INR and I'm right where I'm suppose to be so that's good. I'm on blood thinners daily as I have a huge blood clot in my SVC. This is my second blood clot so I'm on thinners the remainder of my life. I know I'm not a Doctor and can't self medicate or DX so I'll call the coumadin clinic in the AM and tell them about my calf pain and see what they have to say.

I know that I've got fluid around my heart as I'm having major chest pain, and my breathing is really bad tonight. Just checked my oxygen saturation and it's sitting at 89% with me wearing 2 liters of oxygen on. I guess I'll need to contact the cardiology clinic too. Having a temperature and fluid around the heart may not be such a good thing. It just seems never ending for me as of late.

I just am so frustrated, the Doctor that saw me on Friday, had the nerve to ask me what keeps me going and not giving up on life. I answered truthfully and said I'm not sure anymore. I really don't know what's keeping me alive these days. I have so much going on and have so many issues with my health. If I were someone's pet I'd have been put down long ago. I just can't take much more of this constant pain, that I'm dealing with on a daily basis.

I know that I can tolerate a lot more BT pain medication than what my PCM is allowing, but she's so hung up on my respiratory issues that I can't get her to see beyond that. I mean I feel like I'm gonna lose my ever loving mind. Shouldn't she be worried about how I'm feeling mentally as well as physically?

I'll have my left cataract surgery done on August 5th. Please pray that all goes well and my flare up doesn't get worse by having the surgery done. The tendonitis in my Achilles is terrible and nothing is working on that end. The only thing I can say that seems to be helping me right now is my Therapist. At least, she's getting why I'm so agitated and upset 24/7. She's at least understanding when I'm focused on my pain issues. I just can't sit around and wait forever for this pain to lessen. I can't help but wonder if maybe my leukemia is causing me some sort of issue that's making me hurt worse. What do you all think?

I barely can walk around in my bedroom. I was hoping that I looked better when my daughter gets home on the 4th of August. Guessing that won't be the case. Please keep me in your prayers and positive thoughts. I'm desperate and in need of as much assistance as I can get. I thank you all for being here for me and supporting me in my times of need.

I'm keeping you all in my prayers and please take care everyone. I know you are always here, if I need you. I hope that all of you are sleeping and having a comfy night. May your week be good and you days be pain free or at least as low pain wise as it can be. Take care and I'll try to post again soon.

Hugs,
BarbaraDX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3281
   Posted 7/29/2013 12:10 AM (GMT -6)   
Hi Barbara I am sorry that your having such a hard time with your pain, I know the issues with pain med slowing down your respiratory system, but with that said they can monitor it pretty well and still give you at least better pain relief. There is no excuse for them to let you be in such pain, when there are meds available to help you! Your temp is of real concern have you contacted your doctor about your temp? Pericarditis can be really dangerous, do they have you on antibiotics? Maybe they could up you O2 to make you more comfortable? Please contact your doctor if you haven't already about your temp and chest pains. I do keep you in my prayers. I would encourage you to talk to all your doctors about your continued lack of adequate pain control, maybe one of them will listen and realize that treating pain is just as important as treating everything else that is going on!

Your in my prayers................White Beard
Moderator Chronic Pain
I retired from the USAF, in Sept, 1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg , I became disabled in late 1999 and was approved SSD in early 2002! Diagnosed with: DDD, herniated Disk at T12, L3/4; C3/4 Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF Mar 1985; Ulcerative colitis; Chronic Pain; Complex Sleep Apnea; and host of other things! I am White Beard with a White Beard!

DianeB
Veteran Member


Date Joined May 2013
Total Posts : 967
   Posted 7/29/2013 12:19 AM (GMT -6)   
Hi Barbara

Prayers for you.
Hope your temp is down & that you are feeling better.. and that you are asleep.

Wish you had dr who had physically felt awful.pain so they cou,d understand what it does to you .. not that I really wish pain ON Anyone!!.

I agree with what WhiteBeard wrote

Do not give up
Diane

Herniated cervical discs & other assorted disc / spine issues, Arthritis
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis

Fentanyl, oxocodone & muscle relaxers - 1,000 Vit D & multiple daily vit

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 24155
   Posted 7/29/2013 12:33 AM (GMT -6)   
Barb,

Thanks for the update, though it was sad to read. So very sorry you are suffering so severely. Just doesn't seem fair sometimes.

I for one, am glad that you are alive and fighting to stay alive, your life is important. To you, your family, your friends, and to us here. Keep on fighting, and never give up hope. I believe in you.

Hope you can get some sleep, that is one way of getting a break from the pain and suffering part, but realize that many with CP (myself included), also have severe sleep issues, so I know that is not always easy to obtain.

Hoping and wishing the best for you, my friend. I am here for you. Perhaps tomorrow will be a better day for you.

Very concerned for you,

David
Age: 60, 56 at PC dx, PSA 16.3
3rd Biopsy: 9/8 7 of 7 Positive, 40-90%, 4+3
Open RP: 11/8, Catheter in 63 days
Path Rpt: 3+4, pT2c, 42g, 20% tumor, 1 pos margin
Incontinence & ED: None
Surgery Failed, recurrence within 9 months
Salvage Radiation 10/9-11/9, SRT failed within 9 months, PSA: Too High
Spent total of 1 ½ years on 21 catheters, Ileal Conduit Surgery 9/10,
7 other PC-related surgeries 2009-2012

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 4454
   Posted 7/29/2013 2:24 AM (GMT -6)   
Barbara please, please, please, be on that phone to the Cardiologist when they open. If your awake and seem sicker prior to that go to the ER.

I don't like anything I'm reading in this post at all.

Severe aches,high fever,cardio/pulmonary edema, 02 says below 95,peripheral leg pain,shortness of breath. Plug it in to WebMD anyone.

I know I don't have to even look Barbara honey those are textbook symptoms of endocarditis and myocarditis neither of which you want to play with. I urge you as my friend do something sooner rather then later today.

Im sorry your hurting so and feeling everything else as well.

Please let us know what they say.
" Don't give up God gives his hardest battles to his strongest soldiers.

Vickie
Moderator chronic pain

Disabled since 1998 on SSD
DX: lft knee TKR. 6 rt knee surgeries for meniscus repair. Pars defect,ddd at L3-4 S1. disc collapse at L-3 with nerve impinge,legally deaf, shoulder repair,post encephalitis/mig
Meds(Methadone, lyrica, K+,Indocin,Zantac,Zanaflex,Inderal,HRT

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 7/29/2013 2:33 AM (GMT -6)   
Barbara,

I'm w/ everyone else... It it were myself (with that temp, low sats, the pain, swelling and so forth) - I wouldn't be waiting until morning but be heading down to the ER. These are not symptoms to mess around with, esp given your history.

Like I said, I'd head on down.....

Please let us know what happens.

--Tina
Moderator - Chronic Pain Forum

care???
Regular Member


Date Joined May 2013
Total Posts : 148
   Posted 7/29/2013 9:00 AM (GMT -6)   
Barbara,
 Same advice, get to the ER. I read your replies to others in pain (myself included) and know that we need you here! Your daughtor and family also need you, so never give up the fight!  I don't have a very high opinion of most doctors, but yous and his rude an inappropriate question is a jerk. Rise above it!
Hoping to hear good news soon!
 
Lesley

gr8tful
Regular Member


Date Joined Jan 2013
Total Posts : 78
   Posted 7/29/2013 10:03 AM (GMT -6)   
Barbara,
I am so very sorry for your pain and suffering! I will be praying you get some relief sooner rather than later and that your cataract surgery goes well and doesn't cause more of a flare.

I wish these doctors could truly understand the kind of pain some of us are going through. That can be so frustrating. Hopefully someone will listen to you and understand that you need more relief!
Gina
55 yr old; Seropos RA, pernicious anemia, DJD, DDD, Anterior/Posterior L4-5 & L5-S1 fusions, osteoporosis, Sjogrens, bilateral hip stress fractures, rt sacroiliac joint fracture

1 day at a time
Regular Member


Date Joined Nov 2012
Total Posts : 200
   Posted 7/29/2013 11:20 AM (GMT -6)   
You are in my thoughts and prayers. I do hope you can find some relief.

Merrida
Forum Moderator


Date Joined Jul 2013
Total Posts : 4315
   Posted 7/29/2013 3:15 PM (GMT -6)   
Barbara, hoping you find some relief, as well as some answers. It's frustrating when doctors are intent on "compartmentalizing" our individual issues w/o realizing or accepting that we're whole human beings, it's all connected, it's all vital information that relays information on your overall health.

I'm new here, but may I add a vote to coincide with the others....those symptoms are deserving of immediate attention.

Good luck to you.

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2249
   Posted 7/29/2013 5:35 PM (GMT -6)   
Hi Barbara I'm sorry that you're in so much pain, and are suffering so much. I hope you have either went to the ER or at least have called your doctors, and gotten some relief. Please let us know how you are as soon as you can. Keep on fighting my friend.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
Meds: Fentanyl patch, oxycodone, otc: BenGay, Tylenol Arthritis on occasion

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 4454
   Posted 7/30/2013 5:43 AM (GMT -6)   
Thinking about you and hoping your resting or went to the hospital.

Update us when you can.
" Don't give up God gives his hardest battles to his strongest soldiers.

Vickie
Moderator Chronic Pain

Disabled since 1998 on SSD/lumbar spine issues, knee problems.
Chronic pain meds
(Methadone, lyrica,lexapro)

UserANONYMOUS
Forum Moderator


Date Joined May 2011
Total Posts : 2753
   Posted 7/30/2013 7:31 AM (GMT -6)   
Hey Barbara,

Sorry for all the pain you've been in. I agree with the other. I too hope you went to the ER.
Update us when you can please.

Thanks

UA
Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

Fusiongirl
Veteran Member


Date Joined Apr 2012
Total Posts : 596
   Posted 7/30/2013 8:51 AM (GMT -6)   
Barbara, I never wish that someone is in hospital, but on this occasion I am hoping that you are. I think it's the only way that you will get the help you obviously need. Something has to be done to get you back to a place where you are more comfortable. Praying that you are comfortable and in less pain.
Take care
Jane x

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2784
   Posted 7/31/2013 12:45 AM (GMT -6)   
Morning Everyone:

Sorry I didn't get back to you yesterday, I've had a really rough time as of late. As most of you know I've been pretty sick and I'm not getting better. I took the Doctors advice from Friday, even though he was a jerk and called my Rheumy's office. So far I've not had a returned phone call. However, all of my Doctors at the military hospital have up to 72 hours to return phone messages. I called him on Monday morning, I also emailed my PCM as she's always told me if I get into trouble email her and she'd call me ASAP.

Well, she called me this morning around 9am. I was on my way home from the clinic at the military base near where I live. I had just picked up my monthly refill for pain medications. Anyway, she asked me to return to the base and have some blood work done and a chest x-ray. So I made a U-turn and went back to the clinic.

Around 4pm this afternoon she called me to tell me that over all my labs look alright. My hemoglobin was at 9.2 which accounts for me being tired. She also mentioned that I'm neutropenic and wants me to stay away from crowds, avoid eating fresh fruits and veggies, and make sure I wash my hand frequently.. She was thinking this morning that I had a nasty viral infection that is apparently going around here in my area.

She said though after seeing my x-ray she doesn't believe that's what I have. The Radiologist noted that my heart is very enlarged and it looked like a I had some fluid in my chest area. Hence, they're thinking pericarditis and a small pericardial effusion. She wants to talk with a Rheumy before increasing my steroids, but that should help me feel better. So waiting on the Rheumy to tell how much to increase steroids by.

There was a small problem though that was noted, apparently I have a hazy looking mass on the upper top right hand side of my right lung. She said that she pulled my last chest x-ray, that was done in June, and she noted that the hazy looking mass was there at that time too.

Since my oxygen saturation levels have been dropping and I'm having a hard time breathing she went to pulmonary medicine and showed them the films and discussed me with the doctors there. They recommended that I get a chest CT w/o contrast. Well I tried to my an appointment for a chest CT w/o contrast, but so far no luck in getting one set up. Will try again in the morning to get an appointment. My Doctor believes it may be a pneumonia and I will need antibiotics to clear up whatever it is, BUT, they want to make sure what it is before treating me.

If the CT shows that it truly is a mass and not a hazy pocket of pneumonia then they want to know what it is so they will do whatever testing needed. So, as soon as I'm able, I'll get my CT done and see whats up in my right lung. Once the CT is done I'll see either my pulmonoligist, and if she can't see me then one of the fellow would see me.

My temperature was very low grade today 99.7 most of the day. My feet and Achilles tendons are still hurting beyond belief. My chest hurts from the heart issues I'm having. Still not getting much pain relief, I'm just hoping to start to feel better really soon.

They are reluctant to admit me to the medical center as my WBC is very low. I've been admitted in the past and picked up some yucky stuff. So for now, they want me to rest as much as I can at home. Drink plentry of fluids, light meals, and plenty sleep.

Will give another update as soon as I know more. I'm just so sick of all the stuff, I just don't understand why I never get a break. My life is a never ending soap opera and I'm ready to quit the show. Well, I hope you are all doing better and having less pain. Please know I appreciate all your kind words and support. Please take care and be careful.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3281
   Posted 7/31/2013 1:35 AM (GMT -6)   
Barbara I am sorry your having so many problem with your health, I know this might sound funny, but are you satisfied with your medical treatment at the military hospital?  Having dealt with military medicine in my twenty plus years in the service, and then when retiring  and going into nursing and working in civilian medicine, I personally have a rather negative opinion of military medicine in general. I know that some civilian doctors and hospitals are not all that good either but......... Your heart and lungs are of grave concern, and I know that sometimes getting test done at a military facility can take a long time to get scheduled. Is it possible to get these test done a civilian facility if can be done quicker???? Your condition, is of real concern,  I am rather surprised that they are not taking quicker and more intense actions to prevent you from getting any worse! I will continue to keep you in my prayers, as reading your post, is more than a bit worrisome!
 
White Beard
Moderator Chronic Pain
I retired from the USAF, in Sept, 1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg , I became disabled in late 1999 and was approved SSD in early 2002! Diagnosed with: DDD, herniated Disk at T12, L3/4; C3/4 Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF Mar 1985; Ulcerative colitis; Chronic Pain; Complex Sleep Apnea; and host of other things! I am White Beard with a White Beard!

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 4454
   Posted 7/31/2013 2:11 AM (GMT -6)   
Barbara I was truly worried that this was what was going on and even though pericarditis is the least of the beasts it's still a very real threat to you.

WB took the words right outta my mouth and I'm kind of worried your home and not hospitalized. Peri,candidates become endo or myo and get you into real serious place but is serious enough on its own.

Usually they are all treated vigorously with IV antibiotics. Add to that a possible pneumonia?

If you see any changes you get yourself back to that clinic or Er or whatever they have.

I know your a difficult case diagnosis wise but I've seen some iffy responses from your military care. I realize they have some of the supposedly best hospitals but everyday care always seems to be reported as lacking.

I just wish you didn't have so many different hands in the pot as for Drs. More's not always better as things tend to get overlooked, miscommunicated and assumed one of the other Drs has it covered.

And I wish you could catch a break too!

Prayers for you tonight
" Don't give up God gives his hardest battles to his strongest soldiers.

Vickie
Moderator Chronic Pain

Disabled since 1998 on SSD/lumbar spine issues, knee problems.
Chronic pain meds
(Methadone, lyrica,lexapro)

alsoinpain
Regular Member


Date Joined Jun 2012
Total Posts : 353
   Posted 7/31/2013 2:56 PM (GMT -6)   
Wow Barbara, I am so, so sorry that things keep going bad for you. It drives me crazy that they won't even give you extra meds to at least help with your pain, I can't understand why the doctors wont help you get more comfortable, I realize that with your other health issues they have to be careful, but jeez they could / should give you something! Its, in my opinion, very cruel that they let you suffer like this. I will say an extra prayer for you this evening Barbara. (I pray for everyone on a daily basis) I wish I could take this sickness away from you for at least a few hours.

UserANONYMOUS
Forum Moderator


Date Joined May 2011
Total Posts : 2753
   Posted 7/31/2013 6:17 PM (GMT -6)   
Thanks for the update Barbara. I'm sorry to read what's happening though.
Keeping you in my prayers and thoughts.

UA
Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5693
   Posted 7/31/2013 6:21 PM (GMT -6)   
Sometimes when I read your posts my cat looks at me really funny...because I'm *SCREAMING* with frustration that we (humans) can't find a way to help you. (During the day when no neighbors are home.)

I think of you often, my friend. Hugs,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2784
   Posted 8/1/2013 12:33 AM (GMT -6)   
Hi WB, Vickie, Also, UA, and Lynnwood:

Thank you all for your concern about me. I know that you're all really frustrated on my behalf. It's just the way it goes at times with the military hospitals.

WB to answer your question, I was VERY happy with Bethesda, when it was a Naval hospital. However, Walter Reed and Bethesda combined together into one hospital and I'm not so happy with it anymore. My hubby did almost 22 years prior to retiring so I'm pretty used to them jerking me around. I mean they started talking about lupus in 1987 and didn't say yes I had it and certainly didn't start treating it until 2001. I truly believe that's why I'm so sick as I am.

Can I sue them, you know how difficult that can be. Plus, lupus is so very hard to pin down, I'm not sure I could win. As for my primary doctor she and I have been working together ever since she came out of the military's medical school there at Bethesda. She's been caring for me for over 7 years now. No one knows me better than she does. I wouldn't change her for the world, even though she only is in clinic one day a week and won't increase my dilaudid medication. She knows me well enough to give a full history w/o my record from her home. I was admitted to a civilian ICU on a vent and they talked with her at home.

Ever since the two medical centers merged together it's very, very hard to get appointments. Then add the furlough on top and its a true mess there. I can't get my CT until Tuesday the 6th of August. For that appointment I have to go to a small clinic on a military base not at Walter Reed. If I want it done at Walter Reed it would be after the 15th of August before I could get the chest CT. So I'll email my doctor tonight and ask her IF they want me to wait that long. If she say it's fine then really I can't do to much, if she says I want it now she'll change the order to STAT.

Vickie, I live with chronic pericarditis, and I've never had them treat it with antibiotics. They normally give me a very big shot of solumedrol or give it IV if I'm in the hospital. They also increase my prednisone for a week to 10 days and then start to wean me down off the increase dose. Because I've been on steroids so long I'm really starting to have some very very serious issues with my bones. The doctors at NIH and at Walter Reed all feel that we need to try to get me off of steroids. So they have been tapering my steroids, we had to stop when I hit 15mg daily. Due to the desire to take me off them, everyone is reluctant to increase them now. I've had two doctors state I'd do better if I had a higher dose, but no one wants to do that. They all realize I'll NEVER come off of steroids but they want it as low as possible.

I normally stay at home with my pericarditis unless I have a pericardial effusion that is beyond their comfort zone. Currently, the pericardial effusion I have is small and with my WBC being so low they prefer I stay at home. My cardiologist was expecting me to have issues with this as the steroids decreased. I've been on Colchicine since February of this year to try to help with this issue. My inflammation never goes down unless I'm on 50mg of prednisone or higher daily. As you know this isn't a safe dosage to be on. So I just have to learn to cope with this stuff.

I agree with all of you, it's not fair that I'm dealing with what I am. I could be in danger with some of the care I'm getting. I certainly have WAY to many doctors with each having a different opinion. I often have a hard time deciding who to listen to. That being said, I'm TOTALLY AFRAID to leave this group that I have. I could get lucky and get a lot better, OR, I could get a lot worse than I have at the moment. It's a crap shoot, don't know which way it will roll. With all the changes that are coming with 2014 and our medical care and such, things really could go down hill rapidly for me.

I was talking to my therapist about this and she agreed with me that Obamacare (nothing bad meant using the name) isn't a good thing for someone like me. That people who are ill like I am WILL certainly get the shaft in the long run. She's very worried for me as am I. Starting next year, if I were with a civilian group, some of the tests that I need (even tho it can take a bit to get at the military) will be denied to me because of my health. So I'm really not sure what to do, all I can do at this point is pray. I have many people in my life that assure me that I'll not have more placed on me than I can bear.

I'll let you all know as soon as I know something. For now I'm taking it very, very, very easy and resting a lot. I'm due to have cataract surgery on Monday and I'm hoping that I can get it done. I can't wait another month or two to finish my eyes. I'm going crazy with them the way they are now. So please pray that I get my CT today instead of next week, that no one stops my surgery for Monday, and I start feeling better by Saturday when I get up.

I thank you all for your love and support and concern. I can assure you my husband will not allow me to die on his watch, AS HE'S PROMISED EVERYONE. I will promise you all IF I feel worse than I do now I will go to the ER and demand that they do something now.

Have a good day and I hope you are all feeling okay and having low pain days. You're my family and I love you all that support me so. Really, I'm going to be just fine, and my email is listed if you wish to email. If you'd feel better email me and I'll give you my phone number and you can call and talk to me anytime.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Post Edited (Barbara Lee) : 7/31/2013 11:48:30 PM (GMT-6)


rocckyd
Regular Member


Date Joined May 2012
Total Posts : 478
   Posted 8/1/2013 12:55 AM (GMT -6)   
Hate that you are so miserable. I, too, live with pericarditis. Well, that and pleurisy. Like you, the drs like me to try and ride out flares at home since the hospital is one of the worst places for me.

I hope the CT scan gets bumped up. You have enough going on without that on your mind as well. I have a hazy area in my rt lung that was eventually diagnosed as intersticial lung disease. I hate another diagnosis, but the treatment is pretty much the same as I have for the other diseases.

Definitely let us know what the CT shows.

As you know, I'm also on high doses of steriods. Currently taking 50mg. My dr is starting me on this new med called Acthar. It's mainly used for MS relapses. It's supposed to encourage your body to make more of it's own natural cortisol. We are trying this to see if we can decrease the pred. Over a decade of pred has caused it's own host of problems. Look the med up and see what you think. It's $38,000 a vial-crazy I know. I have to be home tomorrow between 8-noon to wait for the delivery. While I don't mind waiting, I wish the delivery was something fun :(

Please keep us posted on what's going on. We have so much in common and I know how frustrated you must be by now.
Single mom to my little man (9yrs old)
36yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, NJ tube

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 4454
   Posted 8/1/2013 3:42 AM (GMT -6)   
Well I missed that chronic pericarditis in your long list of diagnosis Barbara. I was thinking this was an acute attack for you. Your Drs correct with steroids ands "wait and see ". I also know with anything chronic we tend to ignore symptoms sometimes thinking they are same old symptoms with a twist. Just always keep that in check because pericarditis is so close to endo with only the severity of symptoms calling the difference.

I've often been taken to the carpet by a Dr for ignoring a symptom or pain and it turned out it was something different. Well it really didn't hurt like he thought it should, I tried to tell him my methadone was probably dulling it some. Then I scared myself thinking I would have a heart attack or something and wouldn't know it because my meds would "mask " the pain! He laughed and said "oh you'll know "

As for the new healthcare program? It's going to hurt, just no ones sure how much or exactly who. That was my main reason for changing my regular Medicare to a Medicare advantage plan last December.

You may be luckier in the end being under military care. It's seeming that healthcare in general moves slower with progress.

Anyway hoping you will get a break if nothing else. That's what im going to pray for, just a break.
" Don't give up God gives his hardest battles to his strongest soldiers.

Vickie
Moderator Chronic Pain

Disabled since 1998 on SSD/lumbar spine issues, knee problems.
Chronic pain meds
(Methadone, lyrica,lexapro)

Merrida
Forum Moderator


Date Joined Jul 2013
Total Posts : 4315
   Posted 8/1/2013 4:13 AM (GMT -6)   
Doesn't it seem like we're always in a deadspin, between our practitioners and ourselves, bouncing between having the ability present our CP issues in advance, hoping to head off exacerbations, or at the least, spur diagnostics. Most of us have multiple CP issues, from different sources, some related, some not, flare ups from annoying to intractable, exhausted from pain. I've been on my fair share of prednisone 50mgs as well as Medrol dose packs. I know I've even come across as desperate because the pain is destroying my quality of life.

I'm always interested that despite the warnings, many of us get jacked up on prednisone for temporary pain relief, (and it's not a narcotic so they feel safer?)......

Please correct me if I'm wrong, but from what I've learned the side effects of repeatedly going on and off of prednisone, especially at the doses many of us get, there's a type of alga rhythmic correlation making each successive dose more damaging, less effective, and magnifying our risks with each subsequent dose for a multiple of issues.

But,...it's not narcotic. But from what I've read, the dangers are frightenly significantly greater to our whole bodies, putting our bones, immune systems, endocrine system,...at far more risk when compared to carefully monitored narcotic pain medication. (Not addressing the anti-inflammatory benefits of prednisone, just bringing that up).

They dispense that like candy, and as helpful as it is, I feel little regard is given to the long term damage to our bodies,...(but heck, they feel it's "safer" because we won't get "addicted" to this,....but we can develop organ failure, irreversible orthopeodic damage, and endocrine damage).

The pervasive "this is part of your disease/s" comments, and the "you're just going to have to learn to accept and live with this" comments, are so ignorant and berating and condescending to those of us who suffer for years and through the process end up, many times, being more informed than our care givers.

My sympathy, my empathy, my understanding,

Sookie (still on ice, been up since 02:32 from pain and it's now 05:13, no sleep, just pain, discomfort,....I can't fall asleep no matter how tired I am).

Best of luck and please stay in touch with us.

Sookie

nvrthesame98
Forum Moderator


Date Joined Jun 2008
Total Posts : 4454
   Posted 8/1/2013 4:28 AM (GMT -6)   
Good points Sookie. That's pretty much where Barbara 's journey with steroids has taken her to. She's at the big D if she does and same if she doesn't. Her journey with steroids is a book by itself. You can search the site and read some of her ups and downs in the steroid saga and it will baffle you.

Hope you don't mind Barbara we have a knowing advantage over Sookie and to really understand what you've been through with the steroids would make her your kindred soul. It sounds as if you and Barbara have some common ground with steroid use.

Its one Med I've had to take less then a handful of times in my journey. Thankfully!
" Don't give up God gives his hardest battles to his strongest soldiers.

Vickie
Moderator Chronic Pain

Disabled since 1998 on SSD/lumbar spine issues, knee problems.
Chronic pain meds
(Methadone, lyrica,lexapro)
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