New and having a lot of pain...

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NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/30/2011 8:15 AM (GMT -6)   
Hi, I am new to this forum. I have been having "lupus-like" symptoms for the past 2 years and finally see a rheumatologist next friday. In the meantime it has been almost impossible to get my family doctor to understand the severe pain I have been in. He grudgingly put me on tramadol a few weeks ago (3 pills a day) which really does not help but has been better than nothing and finally last week allowed me the prednisone (steroid) which is the one thing that really helps relieve a lot of my symptoms--but at such a low dose (1 10mg pill a day) that I literally have to choose which part of the day I want to feel good for each day!
 
It frustrates me no end that they are not treating my symptoms and pain better. Then the night before last I had a seizure and so now he told me to discontinue the tramadol because it could have affected that, but offered nothing in its place. I was so frustrated that I didn't even ask. I felt like if he really cared he knew how much pain I've been in he would offer. He won't let me take the Mobic with the steroids, won't give me a high enough dose of steroids to really control my pain/symptoms, and just keeps dishing me off onto other specialists.
 
In the meantime, I am totally bruised, swollen joints, swollen lymphnodes (all over--neck, groin, etc.), sores on my scalp, sores in my mouth, rash on my face and chest, and in just severe pain deep in the bones. My RF is elevated, liver enlarged, and RBCs lower side while WBC's on higher side. I don't know what to do anymore and wonder if I should just tell him to send me to a doctor that can control my pain better since he is unwilling to treat anything practically. I asked him for more antibiotic yesterday for the sores in my mouth and scalp and he said he wants to see them first to document them (and he saw them last week already!)
 
So again I am left "high and dry" for the weekend in severe pain and frustrated. I am wondering what others do. If you ask the doctors for pain relief, they treat you like you are a druggie after pain medicines. If you don't ask, you stay in pain and for me that means not being able to even get out of bed! I have a 16 month old son that needs me--staying in bed is NOT an option. I am working on my doctorate too. Being addicted to anything is also not an option. But I need some kind of pain relief at times because it is getting too intense and too long for me to deal with!  Can anyone please help me?!  mad

left forum.
Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 4/30/2011 8:30 AM (GMT -6)   
Hi Niki,

I'm so sorry you have had so much trouble with doctors, some really don't seem to care and are purely there to get money, but when you find the right doctor that does care you will be so much more confident and able to deal with pain, keep trying to find other doctors that can help you. I can't really help you much but just wanted to welcome you to the forum, everyone here is amazing and I think you will find it really good for support and help when you need it! I really hope you can get some relief and help babysitting or something from a friend or family member? I am also on tramadol 200mg twice a day (slow release) when i was on 100 mg it did NOTHING at all then 150mg NOTHING but up that extra dose it works a lot better!

Good luck, thinking of you!

xx
15 years old,
Chronic stomach pain with no diagnosis yet and lots of other things.

When the going gets tough, the tough get going.

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/30/2011 9:21 AM (GMT -6)   
Thank you Buttercup! Did I see that you were diagnosed with leukemia in another thread? And that it is your birthday on Monday? Sweet 16?! Happy Birthday sweetie! I have 50 mg to take 1 3 x a day of the tramadol but my surgeon was giving me 2 pills every six hours--so to go from that to 1 3 x a day is just useless. Then my family doctor acted like why was I out of the pills that I had from the surgeon when she gave me 60 of them last month! I said, if I take them 2 every 6 hours, they really are not even a 15 day supply--and he knows I can't sleep at night because I am in so much pain!!! So it is literally round the clock relief! But he was almost acting like I was abusing of the medicine and I said--doctor--the whole reason I ask you for tramadol is to avoid stronger medicines! Is this not the one to take? And then he agreed he preferred it over other pain meds--but now with the seizure it was like he was happy to take me off and leave me in pure pain!!! I don't get it. He knows that I have lupus and been going through an extreme flair and won't give me the steroids which help more than anything except a tiny dose of it after the rheumatologist I am going to see told him to go ahead and put me on something till he could see me! It has been really serious and I am very weak now too. I really hope you do well! My Great-aunt used to call me "her little buttercup" so now I feel a special connection to you already! Nicki

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 4/30/2011 10:08 AM (GMT -6)   
 
 
          Good morning Nikis!
 
                  Welcome to the CP forum!
 
        The issue you are having with your Dr seems to be very a common complaint these days here on the forum. The federal goverment and local law enforcement agencies are cracking down on the Pill Mills and Dr's with shady practices, and I fear the indrustry as a whole is suffering for it. Actually, the patients who really need treated for their pain are the ones who are suffering! shakehead
 
       The fact that whether or not if this is a factor in you're case may be unknown, but you do have options, one being, you can seek another Dr. It really does sounds like you do indeed need to start looking for another Dr. However, you really do need to be more persistant and advocate your own case first. One thing you might try is to keep a daily pain journal, and present this the next time you have an appointment. Another thing many members would suggest, is to take a family member with you to confirm what you are telling the Dr, in regards to your pain issues.
 
      The weekends can be a little slow here, so please be patient and keep checking back. Most of the members will be back on Monday for another week of support. Untill then please take the time to check out the "Chronic Pain 101" located at the top of our forum home page. There are some great article's there, and I'm sure they will interest you. We also suggest that new members please read the forum rules as well...it tends to keep us out of trouble smilewinkgrin   
 
           Please feel free to visit us anytime, and I'm sure your going to love the members here. They are warm and very supportive!
 
                  Good luck to you!...and again, "Welcome!"
 
         SE wink
              
 
    
Moderator Chronic Pain Forum

"The clock is running. Make the most of today. Time waits for no man. Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why it is called the present."

left forum.
Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 4/30/2011 10:19 AM (GMT -6)   
Thats so bad of doctors to do that to you but I think you will find it has happened to over half the people on this forum so don't think they are just doing it to you! I've had a good run with doctors that i've seen privately, but when I have been admitted to hospital they don't believe I am in pain and tell me to toughen up and I'm just a dramaqueen teen and continue to just treat me like I'm faking it and need to get over myself until I start passing out from pain etc, But now that I have been to so many different doctors and found the ones that really care and want to help, its not so scary going to each appointment! I hope you can find one that will help you, don't give up!! I hope the pain goes down soon too you poor thing :(

Yes I was diagnosed with leukaemia not long ago which was a bit of a shock because we thought with everything else going on in my body there couldn't be anything more but then it showed up! Yeah it's my birthday on monday, sweet 16! pretty excited :)

Praying you get some relief very soon!
xx

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/30/2011 11:12 AM (GMT -6)   
Thank you both for all your good thoughts! I don't want to scare you, but I just lost my grandfather recently from leukemia but his was an extremely aggressive type where they found it just before he passed away. It really broke my heart as I loved him so much but he said this was what he wanted because my grandmother had passed on a few years ago from a brain tumor and he really wanted to be with her. They had been married since they were 16 and 17 years old! And raised a beautiful family of 6 children with I don't know how many grandchildren and great-grandchildren now! I miss them but know they are in a better place. They actually thought at first that I might have leukemia because my nodes were so swollen but then the oncologist thought it wasn't (not sure why) but then I had this rash and sores and bruising/swelling all over and then they started talking likes its lupus.
 
All I know is that I am in just severe pain! It hurts just to type right now--real bad. And I feel like I should not have to crawl to a doctor begging for pain relief--either they offer it or I don't get it because I feel they should offer it when they see I'm in pain. I never ask them for anything real strong either--just the tramadol but now with the seizure... that one form of relief I had is out the window with no replacement... today is not going too good so far and I am not allowed to take Ibuprofen or Mobic or any of the other things that used to help me because of my IC... 
 
It is such a pretty sunny day here in Georgia!  After all the storms that devastated the southeast recently, it is such a calm and beautiful thing to see it shining so pretty. I hope that your birthday, my little Buttercup, is filled with all the precious joys of Sweet 16!!!  I sure remember mine--it is a real moment.
 
I also had to have blood transfusions before after my brain surgeries (for a tumor) and I would recommend you ask that a family member be allowed to donate for you if at all possible!!!!  I am not trying to scare you (please not!!) but I ended up with Hep-C shortly after my second transfusion and although they "swore up and down" that the blood banks are scrutinized and tested--how else could I have gotten it? I am an extremely careful person and have had the same husband now for years--and we are always together: working together on our own company, playing together, evenings together... and I trust him completely... so I am positive the only way I could have gotten it was from that transfusion. 
 
It was in 2000 though, so hopefully they are even more careful now, but I would still caution you although I really really don't want to scare you either. They do really check things out carefully nowadays.  All the best!  Nicki

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/30/2011 11:15 AM (GMT -6)   
Screaming Eagle said...
 
 
          Good morning Nikis!
 
                  Welcome to the CP forum!
 
        The issue you are having with your Dr seems to be very a common complaint these days here on the forum. The federal goverment and local law enforcement agencies are cracking down on the Pill Mills and Dr's with shady practices, and I fear the indrustry as a whole is suffering for it. Actually, the patients who really need treated for their pain are the ones who are suffering! shakehead
 
       The fact that whether or not if this is a factor in you're case may be unknown, but you do have options, one being, you can seek another Dr. It really does sounds like you do indeed need to start looking for another Dr. However, you really do need to be more persistant and advocate your own case first. One thing you might try is to keep a daily pain journal, and present this the next time you have an appointment. Another thing many members would suggest, is to take a family member with you to confirm what you are telling the Dr, in regards to your pain issues.
 
      The weekends can be a little slow here, so please be patient and keep checking back. Most of the members will be back on Monday for another week of support. Untill then please take the time to check out the "Chronic Pain 101" located at the top of our forum home page. There are some great article's there, and I'm sure they will interest you. We also suggest that new members please read the forum rules as well...it tends to keep us out of trouble smilewinkgrin   
 
           Please feel free to visit us anytime, and I'm sure your going to love the members here. They are warm and very supportive!
 
                  Good luck to you!...and again, "Welcome!"
 
         SE wink
              
Thank you so much Screaming Eagle!!!  I do think I need to find another doctor that "cares!" Even my husband is about fed up with this one's attitude of nonchallance. I just don't think it bothers him that his patient is in this much pain--like he has become hardened to seeing too many people like this already or something. And I am not the type to sit there and beg and plead for anything. I feel if it is not offered after I tell them the situation, then they are not listening anyways and there is no point in directly asking. It is not right to be humiliated and feel like you have to beg for the relief that you deserve to have when you are this sick. He has known me for a couple years now and I never asked for anything before all this got bad! Does not that kind of history mean anthing to him?! It floors me... Thank you so much again and I will check out the places you mentioned!  Nicki 
    

venus2471
Regular Member


Date Joined Apr 2011
Total Posts : 32
   Posted 4/30/2011 12:25 PM (GMT -6)   
Aloha Nikis,
I can't emphasize enough how important it is to become your own advocate for your care. I think most of us can tell you horror stories of the care we have received from bad doctors, hospitals and our insurance carriers. In addition to what everyone else has already mentioned to you, I would like to suggest that you start keeping a Personal Medical folder on yourself that contains anything and everything that you have (or need to have) pertaining to yourself. If you don't have something like this already seach the web for an idea of what to create. I wish I knew how to post the templates I have in the forum but I don't. Take it with you everywhere/time you go to a hospital or doctor. This shows that you are serious and telling the truth, it avoids reapeating diagnostic tests and make them take you more seriously. Make sure you get copies of every medical report(s) that doctors or hospitals have on you. It sounds extreme but it really pays off in the short & long run when it comes to your care and dealing with insurance companies. If you are unable to avdvocate for yourself I suggest you contact the Dissability Association or a similar organization in your area. If you haven't found the right team of doctors yet then do so. You'll probably have to go through a few before you'll find a good tem. A good place to find out who the good docs are is at the nurses station in your hospital. Simply call and tell them your new to the are and are looking for the best doctor in the are to treat your condition. Don't mention drugs/meds. You're looking for the 'best' doctor. You'd be suprised who they will/will not recommend. If your in a large city, for example CA, go to a hospital affiliated with a medical school or research center (e.g. UCLA). Be persistent and don't give up. Finally, after what you've just gone through I would strongly recommend getting accodemic LOA for a bit. You can pick back up when you feel better. PUt You and your child first just for a little while. Think about it. You're plate is really full at the moment.

I really wish you well and know that I/we can totally understand your frustration.
Aloha & God bless you abundantly!

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/30/2011 1:10 PM (GMT -6)   
Thank you Venus! what does "accodemic LOA" mean? I'm sorry I am not familiar with the term and want to take your advice! I am about at the point to go to the teaching hospital here in Atlanta today. I am in so much pain and just literally cannot deal with this anymore. I really can't. It has been going on and on for so long and now the one medicine that gave me any kind of pain relief (tramadol) the doctor said I had to stop because of a seizure the night before last! And did not offer anything in its place. Just completely discouraged and in pain! Nicki

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 4/30/2011 2:05 PM (GMT -6)   
unfortunatley i can totally relate to you, once my gp found another job and he had been treating me for many years without any problems with what i was prescriped. he left in dec 2006, and from that time until about one year ago i thing i went through 6 different pain doctors, unfortunatley some of them are nothing but cash cows, one doc i had when you entered the waiting room there could be 20 or more people in front of you but you found ou quickly that you were still in and out in less than 15 to 20 min. because he never spent more than 2 min. with each patient, when you entered in office he already had the prescriptions written out asked how you were, then didnt listen but you were on your way to the pharmacy. there were more but it was just more of the same. so find yourself a pain management doctor who takes the time to really listen, it may take some time, but it is so worth it. good luck, and hoping you are having a low pain day.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/30/2011 3:00 PM (GMT -6)   
Thank you NiNi53! I am in so much pain right now my husband is trying to see if he can scrape up enough pennies for gas to get me up to the teaching hospital in Atlanta to go to the ER... I can't take this anymore. Thanks for the advice! Nicki

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 4/30/2011 4:51 PM (GMT -6)   
NikiS
Have you been diagnosed with Lupus or does your Doctor only suspect that you have Lupus? You said you are going to see a Rheumatologist  next Friday. I can understand why he does not want to increase your dosage of steroid right now, prednisone is a very potent steroid and it is telling that it helps relieve you pain allot. I am surrprised that they did not refer you sooner to a Rheumatologist. Anyway with that said, if you are not happy with the treatment that you are getting from your Doctor then I would definitely be looking for another one! These Doctors work for YOU, you hire them and you can fire them! Yes it would definitely be good if you could go to  teaching hospital and be given a thorough check up. I am sure they could get to the bottom of it! and find out what is wrong! I am sorry that you have had to endure so much pain,  I do hope that you can get some answers to its cause, and then get it treated and under control!
 
As a side note I have been looking at Georgia, around the Warner Robins AFB  area, as a possible location to move to.  How is your weather down in Georgia?  Any information that you might have or would like to share about Georgia, I would much appreciate!
 
Good Luck to YOU
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/30/2011 5:09 PM (GMT -6)   
smurf   Thank you White Beard! I think you would like GA. Which state are you coming from? It is hot here! Been over 90's most days lately which doesn't help with one's energy level. They have not diagnosed me with Lupus yet, but they said there are a list of 11 symptoms the government has or something and that I have 10 of them now and had the 11th already too... The steroids helped last year when I had a similar episode that lasted almost 5 months after my baby was born--but I did not have any pain last year at all that I can remember. I just went kind of paralyzed and numb in my arms and legs real bad, low potassium, dizzy/ringing ears, really thirsty and urinary frequency, etc... wierd stuff. And last year only thing that stopped all symptoms was steroids--so this year it has ben going on bad since December!!!  And my fam doc kept telling me he was "working on it" for months now to the point I am so weak I can't get out of bed hardly at all!!!  And this time I am having excrutiating bone pain--all over--and also a headache running down my spine into back of legs... don't know what or why or how to deal with this anymore. The rheumatology visit came about finally when I was so weak couldn't get out of bed last week and after ER visit where they gave me solumedrol with HUGE relief of symptoms, the fam doc spoke to this rheumatologist who told him to give me the prednisone but only 10 mg per day--it helps for a few hours and rest of 24 hours is pure misery--so been breaking them in half to take every 12 hours but much less relief that way but more constant at least... (doc said it was ok)... but now that he took me off the 3 measley tramadol he has allowed me per day--I am absolutely in pure agony!!! So hard to even type now! My legs/ankles are swollen with huge bruises all over (purple) and my lymphnodes so swollen on my left side of jaw and behind ear that I can hardly open my mouth to talk without sheer pain. I have open lesions on my scalp and he refuses to give me more antibiotic till he "sees" it again next week and sores in my mouth making it hard to eat. I feel like i was run over by a car!!! My RF (rheumatoid factor) is pretty elevated he says and ultrasound shows enlarge liver. I have interstitial cystitis too with severe pelvic pain from it, urinary frequency, and real thirsty a lot so on a very strict diet and can't have certain meds like ibuprofen which used to be really good for me with pain. Can't take Mobic with the prednisone. No aspirin. All it leaves is tylenol which is useless to me--does not work even a little bit--dont' know why!!!!  I've really tried it many times and no difference. This is dragging on and on and the doctor I feel only started taking me serious last week when my husband got upset saying what are you doing? She is so weak she can't go to the bathroom on her own!!!  Then he said--oh, its that bad?! Like he didn't ever believe me this whole time!!!  I am so frustrated and I am sorry this is so long. I just am at my wits end now. We don't have the gas money to go to the hospital. My husband tried everything this afternoon. So I guess grin and bear it now. Sorry to be so depressing tonight. Not usually like this. Nicki

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 4/30/2011 5:45 PM (GMT -6)   
Oh Nicki. I'm so very sorry that you're in such agonizing pain. I really feel for you. I would like to say welcome to the forum too. I certainly hope that you can find some kind of relief really really soon. If I were you, I would be looking for another dr. The one you have seems like he doesn't care. It certainly doesn't make any sense to take you off the tramadol and not replace it with something else. Good luck with your appointment with the Rheumatologist. You should get some answers and some relief after you see him/her. Well, I just wanted to welcome you and tell you hang in there.

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

venus2471
Regular Member


Date Joined Apr 2011
Total Posts : 32
   Posted 4/30/2011 6:16 PM (GMT -6)   
I'm sorry Nikki, typo's are common when you're in pain, tired and on so many meds...what I meant was academic leave of abscence (LOA). You just have to request it and shouldn't have a problem getting it. Worst case senario they may request doctors statement saying it's needed. I think you and your husband have made a smart decision. I hope that you're able to find those pennies. I also hope that he can stay near your side while you're there. It's amazing how different you get treated when there is another person in the room with you. In the mean time know that my thoughts are with you. Please let us know how it all went when you feel up to it.
Aloha & God bless you abundantly!

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 4/30/2011 8:23 PM (GMT -6)   
Thank you so much. We didn't have the money in the end. so much pain right now--unreal. tried to tell my husband i need him to stick up for me and tell doctors. he doesn't understand why i can't tell them myself. says they won't believe him. i think it would go a long way for him to tell them. he is supportive otherwise but thinks i need to do all the talking. it is not working. i am beyond depressed right now and ready to give up--pain unreal. sorry and thank you for support. means so much. Nicki

suesueky
Regular Member


Date Joined Apr 2011
Total Posts : 87
   Posted 4/30/2011 9:28 PM (GMT -6)   
Hiya Niki

First of all I want to send you gentle ((((((hugs)))))) to help you get through the pain and also welcome you to the site. I know what it is like to be in pain, I know its not the same type of pain but its good to be able to talk things through with people who are in the same boat as you. I hope you get some relief soon lovie and get some sleep.
Suesueky

Disc degenerative disease, L3/4 board disc bulge, L4/5 board disc bulge with significant nerve root compression on right L5 nerve root and also DDD at L5/S1. I also have an enlarged uterus with fibroids and have been a sufferer of psoriasis now for about 8 years.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3702
   Posted 5/1/2011 12:05 AM (GMT -6)   
NikiS
 
 What you have said does not sound good at all, and I sure don't understand why your doctor is not being more aggressive in trying to get to the bottom of all this. You may well have Lupus, but you could have something entirely diffferent too! And you should not have to suffer the way you are waiting to find out!  I strongly urge you to seek a second opinion with another doctor, I know that being short of money can be hard, do you have any type of health insurance? If not have you tried seeing or checking out any free clinics in your area? You really need to get this diagnosed and treated, what ever it is you have. I know you want your husband to be more active in being your advocate, but if he is not then you really need to step up to the plate and be your own advocate! I know it is not easy and Doctors can often be intimidating, but honestly they are no better or different than you or me. They put their pants on one leg at a time just like the rest of us! An they are not infallible either, they can and do make mistakes, just like we do! So NikiS I urge you to go and seek a second opinion, if nothing else go to your local hospital ER when things get bad for you. You need to get this diagnosed and taken care of, you said you had a 16 month old son, do it for him, and for your husband if not for yourself!  It is important!  and come here as often as you feel you need to vent and get support! You are part of our family too and we all care about you!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Vannie
Veteran Member


Date Joined Aug 2010
Total Posts : 795
   Posted 5/1/2011 8:00 AM (GMT -6)   
Hi, Niki,

I don't have Lupus, but I have some kind of inflammatory arthritis. They think perhaps it is seronegative RA. All I know is that without prednisone every couple of weeks I get to a level nine pain, and it is unbearable. My rheumatologist appointment is the 10th of May. We shall see. At least my orthopedic knows I am in pain. When it gets really bad, I call the ortho's office and they call in a Medrol pack which helps for a couple of weeks, and then it gets really painful again. They also let me take Celebrex 200 mg a day with the prednisone. I checked with my pharmacist and he said that is okay as long as I protect my stomach. I take Tramadol...2 50 mg tablets twice a day. It really does help me. Less than that doesn't work. I am so, so sorry you are in this pain. This is just SO not right. You need some pain relief. Could you go to your local ER? Would they be able to give you something to get you through the weekend?

V
Fibromyalgia, Inflammatory Arthritis, Osteoarthritis, Asthma, High BP, DDD, Bulging Discs in Cervical & Lumbar Spine, GERD, Prediabetic
Prednisone, Lexapro, Cardizem, Lisinopril, Advair, Lipitor, Vit D, Joint Supplements, Soma, Tramadol, Fish Oil Supplements
I take one day at a time, and try to save my energy for the joy in life.

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 5/1/2011 8:30 AM (GMT -6)   
My husband finally said last night that whether or not we had the gas money to go, he was calling an ambulance and someone needed to see me. They took me to the local ER although he told the ambulance drivers that he did not like that hospital because of the way they had treated me in the past last year when it had gotten bad that time. I think they first of all saw our home, saw what we stand for, and really must have spoken up for me before I ever got there because they even commented on how nice we keep our place and all (I thought it was a mess myself!)
 
But they took me straight back to a room in the ER when I arrived, and the sweetest angel of a doctor came in and asked me what meds had helped me in the past for pain and symptoms!!!! I told her Decadron, Zofran, and Delotid. That is exactly what she gave me and immediately!!!  Then I told her I was scared to go home because I knew I would have relief for a day or two and back to same thing!  She said, no, I am going to make sure that doesn't happen. What helps you the most at home?!!! 
 
I asked her to increase the steroid dose and for something for pain that's not tramadol (since fam doc said to stop over the seizure issue) and so she upped my prednisone dose to 40 mg per day (instead of 10 mg) and gave me 10 mg/500 mg Lortabs for pain (15 which should cover me well up to the appt on Friday with the rheumy for both things!!!)  Already this morning, I am feeling incredibly good and have had to take NO pain med whatsoever yet!!! The steroid shot from last night apparently has been very effective (the Dekadron I requested!) and she gave me a whopping 8 mg shot of it too!
 
I can't believe that there are such good doctors left out there after all I have been through! Amazing! I am so grateful that I broke down and went last night. I was just beyond frustrated, depressed, and thinking  that I just could not cope anymore with this... (I know I shouldn't but it gets where I am so depressed about it and so sick of telling people I am hurting because then I feel even more depressed about myself bringing other people down that I just can't deal with it sometimes!) I am full of new courage this morning and feeling a million bucks already! 
 
I did have a problem after the visit though because my husband did not have the gas to come get me from the hospital... but they finally got a cab to take me after I sat in the waiting room for several hours and they realized that I really did not have any way home! So I am home now (got here around 5:30-6:00ish).  
 
Believe it or not, the rash already is GONE this morning. Not just down, but completely gone! It is amazing how well the steroids work as long as they are in high enough doses. Even the bruising on my ankle looks much better! My neck was so swollen it was sticking out past my ear last night on the left side!!! And this morning it is almost back to normal too! So it makes such an incredible difference and relief for me! The pain is almost completely gone as well at the moment! It is an amazing feeling to have this much relief! I just wanted to share because I was so down yesterday about everything. I just was in so much pain and felt like I couldn't cope anymore--it has been going on for weeks and weeks now getting worse and worse with one big moment hinging on this Rheumatology visit next friday--I am so scared that what if he doesn't do anything? Then what? I am pinning so much hope and trust in him!!!  Thank you all for all the support!!!  Nicki

suesueky
Regular Member


Date Joined Apr 2011
Total Posts : 87
   Posted 5/1/2011 9:25 AM (GMT -6)   
Hi Nikis

I am so made up that you went to ER last night and finally seen someone who had the sense to do something good for you and about time too. I hope you have had a good nights sleep and feel rested today. Its so nice to hear good news especially when you have been in so much pain ((((((hugs)))))). I would not worry about the Friday appointment yet lovie what will be will be, you can only put over what is happening to you and wait and see. I am sure they will be much better than the doctors you have already seen who have done nothing for you pain wise. Not all doctors are the same as you seen last night at ER, there are some stars out there who are willing to help us out. I wish you the best lovie and will be thinking about you on Friday as I have my facet injections and hope we can both get on here to catch up later on that day. Take care sweetie and keep rested
Suesueky

Disc degenerative disease, L3/4 board disc bulge, L4/5 board disc bulge with significant nerve root compression on right L5 nerve root and also DDD at L5/S1. I also have an enlarged uterus with fibroids and have been a sufferer of psoriasis now for about 8 years.

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 5/1/2011 11:34 AM (GMT -6)   
Thank you Suesueky! I will certainly be thinking of you Friday too and give you an update when it is all over. My apt is at 1:40 pm around 30 minutes from here... I guess as you said there is no sense worrying--he can't do any less than what my fam doc already is doing--nothing!!!  I am having so much relief today I feel a million bucks just from the steroids!!!  It is such a relief!!!  Thanks so much and lots of hugs back!  Nicki

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16788
   Posted 5/1/2011 12:41 PM (GMT -6)   
Hi, I too wanted to pop on and tell you welcome to Healing Well's chronic pain forum. It sounds like it is time to kick your current primary care dr to the curb and find a new one. This is not uncommon at all, many times we have to fire these drs and look for better care from some one else. I am surprised that you have stayed as long as you have considering the poor treatment you have received over the past two years. I don't know where you live, if its in the states, then I am not surprised your dr is not prescribing much in the pain medication area. It is pretty rare to find a PCP in the states willing to prescribe pain medication long term. They don't have the time it takes to effectively take care of a chronic pain patient, let alone be up to date on the current meds used to treat chronic pain. If you will notice on this forum many of us talk about our pain mgt dr and that is the type of dr that treats someone with chronic pain. If you have been battling this for 2 years like you say, then you may want to consider asking to be referred to a pain mgt dr.

I do hope that you will keep your appt with the rheumatologist next week.They diagnose and treat people for many different types of auto-immune diseases such as Lupus. It can be a long road in diagnosing diseases such as Lupus because many of them mimic each other in symptoms. I do hope that you can get a diagnosis fairly quick especially since you have suffered so. I just know the drs will not give a dx unless they are 100% sure the patient has it. I have Lupus induced by a medication I take for crohns disease and it was a long drawn out situation. two rheumatologist later before I was actually diagnosed. Be prepared for some extensive lab test to be ordered by the rheumy too. I had several labs test results in hand and he had his own specific ones he preferred.

I do hope you can get to the bottom of this medical stuff and the dr find out what is exactly wrong with you so that correct medical treatment can be started and get you feeling much better. It is real frustrating to be caught up in a limbo of not knowing what is wrong. Anyway, I wanted to pop on and tell you welcome aboard. Take care.
Moderator Chronic Pain Forum

momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2265
   Posted 5/1/2011 2:29 PM (GMT -6)   
Hi Nicki. Welcome to the forum. As you can see there are some of the most wonderful people here. I'm so sorry that you have been going thru so much excruciating pain. It's really good that you went to the ER and got that shot. They even gave you Lortab too. That's great. I'm glad you're feeling so much better today. It really makes a difference when your pain, etc. is under control, doesn't it? He just a couple of weeks ago up until last Thursday I was without my Fentanyl patches. I was going thru withdrawls and excruciating pain. So, I know somewhat where you were coming from. I just wanted to let you know that I understand. We all do here. I look forward to getting to know you better. I agree that you need to kick your primary care doctor to the curb, and find another one. He doesn't sound like he cares whether you're in pain or not. A pain management doctor is a good idea to help you with the pain. You could get lucky on the first try with one, or you could have to try another, but I would advise getting your primary care doctor to refer you to one. You take care. I'm glad your pain is much better.

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

NikiS
Regular Member


Date Joined Mar 2011
Total Posts : 129
   Posted 5/1/2011 4:58 PM (GMT -6)   
Thank you so much! I think I will wait until after the rheumy visit friday to see how that goes to both get rid of my fam doctor and find another. I am scared to "rock the boat" before this visit since he is apparently friendly with this rheumy and want it to go well with him--I know, it sounds bad of me... but it will also give him one last ditch chance to prove he cares at this point--I am going to tell him how I went to ER AGAIN (3rd time in 2 weeks now) for yet another steroid shot with FULL relief... I have only had to take one of the Lortabs today (broke it in half and a half at two different points) and actually it has run out (over 4 hours ago and almost completely pain free at the moment since the 40mg prednisone must have kicked in now!) AND they think we get addicted to this stuff! I take it like it is gold in the smallest possible amount just to get relief and as seldom as possible to make it last... and not at all if feeling good! How crazy is it to label us "druggies" or "drug seeking" for steroids too! I had a doctor the other week ask me how long I've been addicted to steroids?!!! I never took them other than last spring with that bout (and only cause they thought it was my adrenal glands at first) and then in the past 2 1/2 weeks when we realized it was helping again!!!! Ridiculous! I really appreciate all of your support! You have made this much more bearable to know that OTHERS out there DO UNDERSTAND what I am going through!!! It seems no one really does--even my husband who really cares and tries I think could be a lot more understanding at times--like he is tired of seeing or hearing of my pain and so I just either lay in bed crying and he won't come in cause it upsets him, or I say something to him and he gets frustrated saying "what do you want me to do" ... but he really cares--he just feels helpless so tries to avoid seeing it at times I think because it bothers him so much!

I have to go now... my baby just got stung by some ants my husband brought him in a minute ago and already did the Benedryl number and talked to his pediatrician but need to stay with him now--they are GA ants... need to take care of that still and keep an eye on him! Thanks everyone! Nicki
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