I would have to say my major issue is Pain, unrelenting Pain. Specifically in my neck and shoulders and upper arms. I was some what diagnosed with Polymyalgia Rhuematica because taking prednisone the first time I came down with it(but never diagnosed as such ) about 7 years ago pretty much took care of it. But that is hindsight, I remembered that at that time my sciatica was super intense and I had noticed every time I was given prednisone for other reasons that it helped the sciatica so I asked my doctor at the time if we could try a regular dosing of prednisone so we started at 40 mg. and wow relief finally, but at the same time both shoulders and upper arms was hurting major bad and it too disappeared, I just thought I had arthritis and so when the pain left too I never gave it much thought. So I after about 6 years on various levels of prednisone I finally weaned myself off of it last winter 2014 . But as soon as I stopped taking the prednisone my shoulders and upper arm pain came back with a vengeance . I had Xrays done and it showed severe Osteoarthritis in both shoulder joints. So I was given various NSAIDS to ease the pain which in fact did absolutely nothing for my pain. So I went on the Internet and started to try to figure out what in the hell my problem was because it was terrible and unrelenting pain I was unable to use my arms, I was needing help getting dressed, I could no longer reach for any thing I only had use of my arms from my elbows down the pain levels was around 8 or 9 and this was CONSTANT. I finally found a diagnosis I thought fit and told my doctor who agreed that it sounded like it and I was given blood test and they came back with the right numbers elevated that determined I probably have PMR or polymyalgia rhuematica , folks this is an extremely debilitating disease, I can handle disabilities but it is the chronic pain that goes with it that makes life suck. I was not put on a large dose of prednisone only 10 mg.
the usual starting dose is either 15mg. or 20mg. so it did knock the pain down a few numbers and the use of my arms have improved but it has not wiped out the pain and immobility of it like the higher dosage I was on before. I have been on 10mg. for a year now and it is just not doing it for me. But I am somewhat OK with that because the side effects of prednisone at 10 mg. is not near as bad as it can be at 20mg. But the shoulder joint pain on both arms is not effected much by the prednisone it mainly works on the muscles in my upper arms which feel like extreme muscle cramping and like some one is gripping my arms as tight as can be, so even if the symptoms are completely gone from my arms I still have the shoulders to deal with and folks this is NOT like the Osteoarthritis that I deal with in my knees and hip this pain is nonstop constant unrelenting burning searing deep achy pain that stays around 6 or above level with pain medications. It may show up on Xrays as osteo but it does not feel like it. I have got to find some relief and find a correct diagnosis for this so I can get the right medications for it. Now to top it all off I have some kind of cyst or nodule or growth smack on top of my right shoulder that is now the size of a baseball, I have been to 5 doctors and none of them did a damn thing for me, I need this monster removed. So my next chore is to find a new doctor ,the one I had ,up and left town and so I am now without a doctor and I need to find a surgeon as well, I need some relief and I am damn tired of the run around I have had with most of the doctors I have dealt with. My pain tolerance level is diminishing rapidly.
I have had to sleep in my Recliner that lifts, for 4 years now because of this shoulder and arm pain and because of the Neuropathy pain caused by my back issues, from my knees to my feet , when laying flat in bed it feels like my legs are on fire and I can not lay flat because of the shoulders and I can't sleep on either side at all, so I have slept in the living room and no longer able to sleep with the hubby any more and at the time 34 years of sleeping together, it has been a major adjustment.
But being able to go to another doctor has been a challenge these last few month, they discovered cancer in Hubby's kidney, he had it removed 2 weeks ago and now has just one kidney, his cancer was 5 centimeters and stage 2 , they are very optimistic for his full recovery will have to have check ups every 3 months for 5 years, so he has been foremost in my mind these past couple of months, but now I will have to find some help, I have waited long enough.
healing blessings
PPP
Pain such a subjective and personal subject. Most people are relatively healthy, have occasional headaches, may have stubbed their toe, have a tooth ache, get sore muscles by over doing it from time to time, but really nothing that changes your life to any extent other than slow down a bit till it subsides, but in most cases it does subside. I know ,that USED to be me.
Now lets talk Chronic Pain, this pain never ever goes away although the pain level may go up and down , it is ALWAYS there and hangs around like a dark gray stormy cloud raining on your life day in and day out and in most cases changes your life considerably. If you have a chronic illness or have chronic pain your life that you had is only but a memory. The life we have now is in some cases, waking night mares.
When I tell some one I have arthritis, people shrug their shoulders as if to say, hey everyone gets that with age, it is nothing. But it is something, your bones are grinding into itself, pinching nerves, inflaming muscles, making movement and mobility a major problem. Lets say you get a pain in one small little joint , lets say a finger or a thumb, it is amazing how it affects your body as a whole. Think back when you got a paper cut, the initial pain was terrible and made you think about that poor finger with a little bitty cut on it, but it hurt ,damn it ! That is not the pain I am writing about here.
Think back when you came down with the flu, lets say it was a bad one and your sick in bed or on the couch for a week, your body aches all over , your tired, your nauseated and you just want to sleep until it goes away,and you do sleep all the time. Well , welcome to my world, and many like me with chronic pain, only in most of us with chronic pain that flu like feeling NEVER goes away, sleep does not come as often as it should, most of us are lucky to get 2 or 5 hours sleep at a time and many of us have less than that. Pain and movement causes so much discomfort, finding a comfortable position to sleep in is troublesome,if your lucky enough to find it, because you know that when you finally find that spot, you will PAY FOR IT IN THE MORNING , because your body did not move much while you slept and so upon waking you are unable to move without a lot of pain and discomfort and even when you want to move your body makes it so hard to do so. Pain is something that alienates you from your family, friends and the world for that matter, because for many of us you can not see the pain or illness, you can not see anything on ones body that would cause this kind of pain, invisible. People can't see your pain, they only can see your reaction but not the cause of the pain in most cases. People can not understand why you are not up and about like you use to be, most of the time they think you are making a big to do about nothing, that my friends is sometimes worse than the pain we experience. Not to have love ones understand,or even believe you,hell trying to get your Doctor on your side is a miracle in itself. I thankfully have family and friends that do believe me and understand and are on my side, thank God, but many of us who are in Chronic pain are alone in that pain, and that is a damn shame on all their famiy and friends who do this to them.
In my case I have 3 different types of pain maybe more, and one pain medication does not work for all types. Vicodin does nothing for head aches, in fact may give you one, for me it may relieve pain for a few hours but only to knock it down a couple of notches on the pain scale, BUT lately any Opiates cause severe nausea and dizziness and not worth a hour or two of lowering the pain a notch or two, but any reduction is a blessing, Ibuprofen/Advil may work on 'normal' headaches, and mild pain of arthritis or sore muscles, but does nothing for moderate and severe arthritis pain and forget relieving nerve pain which in most cases nothing works for it . Arthritis for some may be just a shoulder, or an elbow, may be your fingers, maybe the location is just one knee, or various spots on one's back, but for the most part just one or maybe 2 locations on your body you could say has a 'bit of arthritis ' in it. That can be tolerable at least in the early and mild stages of it, something an Advil or two will help, maybe an ice pack or heating pad now and again and off you go, now consider most of your major joints affected with 'arthritis' , in my case , both knees, my left hip, both shoulders, my neck, upper, mid and lower back, these hurt 24/7 but at some times all my fingers get affected, sometimes my jaw, sometimes, my ankles and feet, my toes, they get on the band wagon every once in a while as if to say 'don't forget us'. And this chronic pain started in my early 40's this is not 'just' an old person's disease. I am thankful most days I have maybe 2 areas that are having more pain that the other areas,say level 6-8, although the other areas are just turned down lower, what I call back ground noise at a level 3-4 pain, that is after any pain medication I have taken. But for those days we with chronic pain call FLARES, all your achy normal spots get a fire in them and all areas reach crisis mode with pain levels 7-9 and this is after pain medication mind you. Thankfully those days are not constant and those days are not as often, but they happen sometimes on a weekly basis. Sometimes it is just a few of your joints in crisis mode, and for those flares your medication takes the edge off, but when the flares happen to all your troubled spots, then God help us on those days.
I have,so the doctor says Osteoarthritis in most of my joints, . HERE which is why I am now in a wheel chair , I am able to stand for a minute or two and take a number of steps but then I am unable to move my hip or leg to go any further.
I also have: PMR HERE , which is the most insufferable pain I have yet to deal with, I have it in both my upper arms not including the arthritis in both shoulders. The pain will totally mess you up, and make you so dependent on others and unable to even move your upper arms for anything , pain level for this untreated is 8-9. Thank God for Prednisone which knocks its down a whole lot but then I have to contend with its major side effects.But I and most sufferers of PMR disagree with the so called Specialists on this disease, it effects even young adults, it does not go away , it only goes into remission if you are lucky and may come back many times after remission.
I also have:Peripheral Neuropathy which cause carpel tunnel and shooting pain and numbness and needle burning feelings in arms and legs. HERE
I also have Scoliosis of lower lumbar HERE caused by the results from my Legg Calve Perthes disease I had as a child,HERE that cause my left leg to be shorter causing my spine to twist which in turn causes my sciatica HERE.
Then we have my neck and spine that has bulging discs and Degenerative disc disease with bone spurs.HERE Caused by all the above and working hard as a CNA lifting adults that in most cases were too heavy to lift.
I am so thankful that I have not had any surgeries on my poor body because of all this, but it is in my future. Many like me, have already had many surgeries, and in some cases only made it worse, and some are a lot better from the ordeal.
This is all to explain that when it comes to pain and chronic pain I know what I am talking about but wish I didn't. Most of us do not seek pity, just understanding and acknowledgement. I exist as do the millions that suffer chronic pain. If you know someone who suffers, be understanding and don't add more weight to their already burdened body and mind. Chronic pain for the most part, and for most of us cause extreme fatigue because it wears you out to be in constant pain and we suffer from various stages of depression and grief for the life we once had. Be loving and supportive to those who have chronic illness and pain, don't add to our already burdened life.
Blessed be.
Below is a handy pain level assessment guide that I use:
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| Me with brace in 1964 |
How I ended up the way I am now began about 54 yeas ago, in 1961. I remember playing in the playground, I was 5 and in Kindergarten , we were running races and I collapsed to the ground in a whole hell of a lot of pain. I remember laying on our sofa/couch and feeling any vibration from anyone walking into the living room, which cause excruciating pain . When my pain got worse instead of better my parents took me to ER and from there I went to L.A. Children's Hospital and where I stayed for about a month in traction.
I was diagnosed with Legg-Calvé-Perthes disease (LCPD) is a form of osteonecrosis of the hip that is found only in children. It is known by a few other names such as ischemic necrosis of the hip, coxa plana, osteochondritis and avascular necrosis of the femoral head. Most commonly it is called Legg-Perthes disease, LCPD, or Perthes.for more information. Basically my hip ball was starved for blood and died but being a young child and bones still growing , a new hip can grow back, but not always as good as the original one. Usually it is not smooth or very round, especially way back when , when I came down with this.
This was in my left Hip. After a month in the hospital in traction I was then fitted with a brace that I had to wear for about 3 years and I think I had to be fitted for one each year because of childhood growth. I had to go to a handicapped school during that time.
From that time to now I have had hip problems. Because my leg and foot was now a good size smaller than my right leg and back then there was no therapy when I was taken out of this brace, they took the brace off and said you are all better now. Right, my leg had not bore any weight for 3 years so you can imagine how much smaller and weaker it was. They told me when I reached adulthood I would get arthritis, thanks for the good news. I immediately began to walk with a limp and with time that caused my lower back to twist causing Scoliosis of my lumbar.
Scoliosis is a lateral (toward the side) curvature in the normally straight vertical line of the spine.
Which then began a domino effect with my spine and my other leg . I now have Degenerative Disc Disease and other issues from my neck down to my very low back which causes my severe Sciatica on the same left hip side that I can only treat with Prednisone .That then caused me to also favor my left leg causing my right knee to take on more than necessary which caused a speeding of the ware and tear to my knee causing Osteoarthritis ( OA ) to my knee. My left hip today is in need of a new hip as well as a new right knee, but because of my weight they will not perform the surgery for replacements. I am now in Chronic pain and I am in a Wheel Chair. The thing with the weight issues, most is caused by lack of exercise, I am in a wheel chair, also because of the medications I have had to take which cause weight gain, it is a vicious circle I play with this. I lost 100 lbs. but was prescribed prednisone 40 mg. then down to 20 mg. for about 5 years and Gabapentin in high doses which are notorious for causing weight gain , for me over 100 lbs. got off of those lost 80lbs. but now back on the damn prednisone but only 10 mg. not near enough for what I need it for but I just can't go through all the issues it causes again.
Painless blessings to all of you,
Painful PattyPat
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