Exhaustion
 

Hi, I,m having a hard time with being tired all the time, when I make a bed, I am out of breath. when I walk from my living room to my bedroom I am out of breath, that is also when my heart just goes crazy, beating so hard like it's going to beat right out of my chest. And the blood pressures stay up at around 190/98, and that is on 4 pressure pills. I never feel like I have energy, I try to do things, all sorts of things, but my blood pressure and heart rate just stay way too high. I have to use a walker so I am wondering if I just don't get enough excercise. My PT doesn't let me do too much because of the blood pressure and heart rate. I have had this since 1986 and have been thru it all, Dr. Schwartsman said that I am palliative care only, no more blocks or surgery. I am still in alot of pain so all the procedures (blocks) and surgeries really did not last. I had 3 sympathectomies years ago and they are now growing back bad, like they were before the surgeries (they were done before the Dr.s realized they were useless. I take vitamins to try to keep my strength up get b-12 shots monthly. My PM told me I am beyond other treatments. Does anyone have any thoughts on this, they would really be appreciated. I hate this, it's becoming unbearable along with all the other RSD stuff, sorry to rant, but it has been a rough time lately.
Thank you in advance
Your friend Wendy

Wendy , Sorry to hear of your issues you are having , I would maybe consider having blood work done to check all your levels . The B-12 was my first thought , however you still may be low on something you are not aware of that your vitamins are not covering . I imagine the inactivity surely plays a role in this as well . Please keep an eye on that B/P , you do not want to keep it running that high .... have they adjusted your B/P meds lately ? Just some thoughts , hope this finds you feeling better and take care !

RU, thanks for responding so quickly, I just had my blood work done about 2 weeks ago everything was ok except for the b-12 which I have been on for months. My blood pressure stays high almost all the time, the Dr.s think it's either the pain I'm in or the internal RSD (who knows) They mess with my pressure meds every month. I have been hospitalized 3 times to telemetry for the B/P, where they have done every test that they can come up with (all in the last 18 months) If my PT doesn't let me do too much because of what the Dr.s orders are, then I wonder how I can build myself up?
I too live in Fl. I live in Palm Harbor, are you anywhere near here? This weather is a Beach, the heat kills me and then when I go outside to the car, the air conditioning kills me also, do you have that same problem? thanks again for your thoughts.
Wendy

My wife can't take the heat at all and or cold air blowing out from the AC. She has RSD. One thing positive about her condition is her BP is only slightly elevated and only sometimes. My blood pressure is higher! :D
Does high BP run in your family?

That sounds awful. Sounds like you need to go see a doctor urgently. Maybe A/E?

Hi Jim, Well at least I'm not alone with the heat and the air conditioning. I'm really glad that your wife (is it suzy) doesn't have the B/P problem. I have had RSD since 1986 and thought I had been or seen everything, then about 2 years ago I started to get new problems like theB/P and some other annoying things. I came to these boards about 3-4 months ago and am still learning from the great people here, they seem to always come to the rescue when needed. If I remember isn't your wife getting ready to see the judge this SSDI crap will either be a savior or a killer my thoughts and prayers are with you guys too, I wish the best when the time comes. And Jim, the stress from all the work and fighting you do for your wife is so admiral, she is so lucky to have you have her back, and because of all thuis stress you too need to watch your B/P
Thanks again, Wendy

Hi,
 

The blood pressure problem could be a medical issue in itself. I do think some sort of exercise is something that we all need. I go out to the vets home and exercise with them 2 days a week. I don't do their therabandds or weights though.

I have seen people get out of their wheelchair Wendy. I don't know how old you are but age matters too. I'll be 59 next month but I still stay as active as possible but it took me years to get this far. It wasn't ovenight. My PTer wouldn't make me do certain things either. He mostly did light massage and had me to do some light exercises at home at my own pace. I think only we know how much we can do.

My blood pressure was really high when my pain level was through the roof now it's down. Mine was from the pain. I can actually handle the cold better anymore then the heat. Either one can be a problem though. The heat messes with my CFS. I can't stand the air conditioning though. I use fans a lot but don't turn them on me.

Hope you find some answers soon.

Ada

Thanks Wendy. The stress not only raised my bp but I have an irregular heartbeat too, however a mild form of both in which I take meds for. I don't fret over it because the contrast between my condition and Suzy's is enormous. Yes, her date in front of a judge is coming very soon but do not have a firm date yet.
I pray you get this bp under control asap!

jim

(Hi Ada,
I appreciate your input always,I am going to be 52 on July 28 I can hardly wait, I think I am a little active as my husband and I are raising our grandaughter since birth. She is just 7 now, but we have had her since she was born. I had to deal with all the motherly things that moms do with infants thru first grade. I was kind of at a place where I had my pain under control, then about 2 years ago different things started to happen. Like I have said before, I have had this crap(excuse my english) since 1986 and thought I had been through it all. What kinds of things do you do with the Vets. I am back to a point with my grandaughter that she is into all sorts of stuff and we ablige. Going to ballet and her recitals, taking art classes and I have to stay with her(because of her age).She takes gymnastics weekly also, and we have to take her and watch her. So I thought that with all of her activities that we are involved with year long I was active, I think she helps me stay younger. Still no one can figure out why my pressure stays so high. even when talking I run out of breath, this is crazy. I have total body RSD involving internal, so what, they still can't figure alot of this out, what are we to do? I guess we just keep chugging along.
Thanks, Wendy hope you are feeling better, you are always upbeat

Wendy, have you checked your diet such as salt intake and caffein etc.?

Jim, I do not use salt, and maybe a half cup of coffee, I had a nutritionist come see me in the hospital last year and she basically told me the do's and don'ts for all my (special) problems.
Thanks again of trying to help, I swear this board of people are terrific.I hope Suzy is having a better day.

About the elevated B/P meds need fine tuning!
 

Although I've had CRPS for 4 yrs and read everything I can -other people here would probably know better than me if your B/P could be CRPS related -but as a practicing nurse of 33 yrs, I would say that you shouldn't shrug off your B/P in that range -especially if you are on 4 pills for it. If you have a cardiac history and elevated B/P, and your meds aren't effective, your doc really needs to do some fine tuning. You don't need any further health problems getting worse on you. :Grin-Nod:
I know that I'm guilty of not going to the doctor about non-CRPS problems, because I am soooo tired of seeing doctors - and maybe you feel that way too - but elevated B/P is like a silent ticking bomb, with serious consequences.
Please make your doctor address it and get it in a safer range so your body is a little healthier to battle your CRPS.:hug:

We are off to the ocean and bay in the morning and Suzy is excited about going away to a friend's oceanside retreat, a very beautiful calm place. I'll be out crabbing, she'll relax walking the shoreline. :)

Jim and Suzy... Have a great relaxing time!!
Wendy

Hi Wendy,
 

Sorry it took me a few days to answer this.

Out at the vets home, I exercise with them, I work puzzles, I help the ones that want to mess with the computer, I help do coffee and donut time. I help with cookouts or whatever else they have going on. I love it but I will say, those guys and girls are more active then I am.

I am dealing with the breathing problems and they have put me on Amitiza. It is helping some with that. I have stomach problems so they are contributing some of them to the breathing. I also have cronic constipation so they think that my food is backing up and laying on my lungs. They have diagnosed me with several problems that is causing the stomach issues.

I am having surgery next Wednesday. They are going into my stomach for exploratory surgery in 3 different places and they are going to cut a nerve in the left hip pelvic area to try and help with the pelvic pain. No guarantees but after years of this I am ready. I have a great PCP and he will check on me Wed. he said. I really like the surgeon too that I have.

My Grandson's will be 17 and 16 here soon and boy do they keep me active. They both have girlfriends now. Dustin has been going with Jess for over 2 years so now she's mine. Devin just introduced me to his new girlfriend yesterday but he changes girlfriends like he changes clothes so the jury's out on that one yet. They stay with me a lot and I go to all of their school functions. I also have a bunch more that call me Grandma so I'm not missing out on anything at school, that's for sure. I love it though, it does keep you feeling young. Dustin's here with me now and Devin is around somewhere too. I have them as much as the parents I think.

Wendy, I run out of breath talking on the phone walking around the house and when I overdo it so I know what you are talking about. I have RSD full bodied. I am now seeing more problems with my feet and right leg. Don't know what else is going on there. Could you have stomach problems from your meds? It seems like everything is connected and RSD brings on things we sure wouldn't think about.

Jim, I have never been big on salt and I have cut my caffine down to almost nil.

Ada

Hi Wendy,
It sounds like you are having such a hard time right now. I feel for you. I was kind of in the same position five years ago and could not walk five feet to the bathroom from my bed, could not wash my own dishes, or make my bed. I was useless and felt terrible and exhausted with everything I did. But, I had a physical therapist come to my home three times a week and he got me from doing exercises in bed and later up and doing leg lifts on my walker...which I could barely do and would cry afterwards from physical pain and from emotional pain of not being able to do a thing. What I started to do was pray alot and try to do a little bit of something new each week (or sometimes month). THen, I would feel like I accomplished something. It took a long time and five years later I am starting to walk with only one cane now and I can do many more things around the house. I judge my accomplishments on a yearly basis instead of a weekly basis and go from there. Maybe some in-home PT and even done in bed so you don't exhaust yourself would help you out. I even used a book specifically made for exercising in your bed and it really helped. Good luck and I pray you will improve with each day.
Take care,
kathy d

Hi Pac, I've had this RSD stuff since 1986 and was semi under control painwise until about 2 years ago. I have been thru almost everything since 86 then about2 years ago new problems just started happening.I do not have cardiac history, that is why they think it is rsd related. I have been hospitalized 3 times in the last 18 months to telemetry because of the high B/P and breathing problems and they have done every kind of test to no avail, it just gets so frustrating as you would know. I see my Dr.s monthly and they change my B/P meds monthly, it's crazy. I have other new problems that came along about the same time,I have erosive esophogitius(sp) and erosive gastritius that really give me h***. I truly believe that all this is related somehow, sometimes the cramps in my belly start a whole new pain level thats just so excruciating. I'm sorry for the complaining, today was one of thos mornings that just start out crappy(excuse my english)
Thanks for your input
Wendy

Hi Ada, always nice to hear from you
It sounds like you really like going to the vets and helping out, it must give you such a sense of selflessness. I bet they can run circles around you, as when I go to see my mom at her condo and they are all elderly I see them doing things I only dream of.
I too am dealing with the breathing problems, the stomach problems, and the chronic constipation. This all started happening about 2 years ago. I have had all the tests and they decided that I have erosive esophogitius and erosive gastritius, their answer was to give me prilosec? HUH.. oh yes they also said I have Gerd, where the things in my stomach back up. I hear the girgling when I'm still in bed first thing in the morning. If you don't mind me asking what did they diagnose you with as far as your stomach?,
So you are going in the hospital for surgery next Wed., you must really be in some horrific pain, as I was told at my point to be palliative care only. I wish you the best with these procedures, sounds like you are in good hands , as you said that you really like your PCP and the surgeon.Have any of your Dr.s ever told you that the stomach problems and the breathing and I have very high B/P are all associated some how, I truly believe they are. They just started Amitiza and I am not getting much relief from it, how long did it take for you to start to feel a little better? You said it was to help with the breathing because of the stomach? I'm with you on getting out of breath even when talking on the phone, what the heck can this be about.
Sounds like you do have your hands full with 2 teenagers hanging out, now that is scary(kidding)I just remember when my 3 were teenagers, they sure do keep you going, and keep you feeling young.You must be the cool grandma to have them around all the time.Thanks for your response and if I do not talk to you prior to next week, Good luck and all my prayers are with you.
Wendy

Hi Wendy,
 

I have all kinds of pictures of the boys in my photo file here and on facebook. Dustin is asleep and Devin stayed with a friend. He called me and ask me if he could spend the night with a friend and I asked him if he'd ask Mom and Travis and he said he was spending the night with me so he had to ask me. He'll be running in here soon. Their bikes are a fixture in their bedroom. Someone stole Devin's about 2 months ago and we got it back so we can't leave them out anymore. My ex-son-in-law got it back, cops didn't do a thing as usual.

My Mom was like yours, I couldn't keep up with her and her friends weeks before she passed. The vets go to Cripple Creek to gamble, out to eat, they go shopping every Tuesday. They run more then I do that's for sure.

I cannot see that the Amitiza is helping me but I am going to stay on it awhile longer. It does make me nauseated if I take it without food. I am on the Metformin also for the stomach. I can see a difference with it. If I go off of it, I start bloating. Liquids make me bloat. I can't do water at all. I am on Nexium for the GERD.

They diagnosed me with Motility related dyspepsia, metabolic syndrome and 1 other things I can't think of. One had to do with the breathing. I thought I had put that in save and didn't. I will try and find it. I just got approved by the pharmaceutical company for a years free supply of Amitiza because my insurance won't pay for it. My Dr. helped me get it done.

As far as the surgery, I have been to so many Dr. for this pelvic pain and then I developed the stomach problems. I can't believe how many Drs. you have to see just to find one good one.

I would keep at the Amitiza, Wendy. It might start doing better as you get it in your system. I am finding it easier to take. I have been on it for over a month or so now and I cannot tell the difference as far as it helping with the constipation.

Feel better soon.
Ada

Hi Kathy d,
You said that you were in the same kind of situation as me about 5 years ago. Did they ever tell you what this exhaustion was being caused by? Right now they are telling me it is do to the RSD, I do have total body with internal. I have PT twice a week at the hosp. but even just going there tires me ou before I even get started. I have had RSD since 1986 and been thru and seen everything, so I thought. I had all this new stuff start about 2 years ago, out of nowhere.I all of a sudden was exhausted, I have erosive esophogitius and erosive gastritius that brings my pain to a new level. 2 years ago I was only using a cane, and now a walker and the Dr. wants me to go to a wheelchair because I fall all the time. My B/P is usually around 190/98 and I'm on 4 pressure pills among all the other meds. No Dr. knows what to do with me, I guess medicate me, to try to get the B/P down. Dr. Schwartzman told me I was stage 4 and was to be only palliative care. So I guess I get to just keep chugging along until they find an answer to all of these crazy new problems.
Thanks for your input,
Wendy

Hi Wendy! I a so sorry you are feeling bad and I wish I could do something for you. Since the RSD my blood pressure is creeping up on me. I feel tired all the time to. Just getting up is a struggle cause I want to sleep. I think it is probably all the meds I am on. I hope you can get to feeling a little better. Will keep you in my prayers.
Angela

I am tired a lot, although I think it's more due to my lack of sleep. As for the elevated heartbeat (tachycardia), I have the same issue and was placed on medication for it. Once it didn't help, I was referred to a cardiologist. After getting a clean bill of health heart-wise, the cardiologist told me that he feels it's due to the constant state of pain, that it's just so hard for the body that the heart races. He said it's okay for now, but that long-term, it can wear the heart out prematurely, which is why we're working so hard to get the pain under control.

After 26-7 years with this ugly monster, I'm coming to a conclusion. (Actually came to it quite some time ago, then acquired a head injury and forgot!)
It is this:

Pain, in and unto itself, causes us to become tired. I don't know the exact science behind it, but dam, if it doesn't take a lot of effort to 'Hurt'!

I've got a fairly well regulated medication regimen.
I should exercise more, but that's more for long term health, imho.
(It surely can't hurt, we definitely need it)>

I also know that depression can put a big weight on us to carry around, and that is exhausting.

So, in my humble little mind, it's those two things, Pain, and the depression that comes with it naturally (if you're in chronic pain, you're depressed), wear us down.
It's the same two things, that draw us to come here, to come together!
We're 'naturally' fighting pain and/or depression.
And, thanks be to God, for those who come here for their loved ones! You all have my respect!

Pete
asb

I am sorry you are dealing with this on top of the pain. Are you on any meds that could increase b/p as a side effect? You mentioned blood work but have you been tested for auto immune conditions? How is your sleep? You stated your stomach problems do you feel you are able to get proper nurishment cause I wonder if that impacts not only the b 12 but being so tired? I am sorry I wish I had more answers rather then questions for you.
On a side note I live in South FL. FOr me cold and snow is worse but this is no picnic either. Just like you the heat and humidity is very hard so I am in doors mostly but the air conditioning bothers me. I have the vents directed at a certain angle so it does not hit my sensitive areas.