Today I had a wee bit of time to have a look around at the latest blogs, and Fibro sites, and I came across many that had one core element that flowed through all blogs and sites... this will be of no surprise to you, as it wasn't to me, but found it reaffirming that we (chronic pain sufferers) are all in the same boat. Do you want to have a guess what that core element was? Now's your chance, before I tell you! I'm so curious how many of you guessed it...
It was well and truly the 'inconsistency' of this syndrome. The surprise element. The fact that you don't know if you are going to sleep well tonight, hurt here or there, all over, or not, feel extreme pain, or light pain, aching or tingling or both, will you have my favourite symptom of what feels like 'fire in your blood'? You don't know if you will feel well enough today, tomorrow, next week or next month. You don't know if you will be able to present in a meeting without brain fog, or will you struggle to find the words? Will you rest well tonight, or lay awake urging yourself to sleep? This seems to be the core element, the consistent inconsistency of this major illness that affects so many. I for one after years of having it still can't get my head around it. I know that it pounces, out of nowhere, like a young kitten and a moving string... you don't know when it is going to hit, or how hard. What a life! To be a Fibro sufferer is to be a person with stamina for the unexpected.
I was sad to hear a very good friend of mine from my home country has recently been diagnosed with fibro. We hadn't been in touch heaps over the years, but she is like a niece who has always been there, in the background living her life and being successful in business and as a mother. She is in her early 30's and all I can think of is her journey in life now, with the knowledge that a) she really doesn't know what is ahead with this illness and b) that she will be able to cope, but she won't feel like she can right now... I told her that it took me a few years to actually get my head around the truth of this illness, it took me that long to stop denying it and looking for other answers... (and I still have my moments!). I wish for her, that she will be able to still have a positive outlook considering the super inconsistencies associated with this illness, and know that one thing for sure is she isn't alone. Sometimes trolling through the internet is the worst thing you can do, and sometimes it is super helpful. Depending on your mood and what you are looking for. Which is exactly why I originally started this blog... so I hope that she, and others who are new to the life of chronic pain, or fibro or anything along the lines of... will find that reading about others and their journey is so helpful, it shows that you are not alone, it shows the varying symptoms, trials and tribulations of the sufferers.
There was one link I found that was rather interesting and informative with many links to other documents and sites, I thought I would share with you today.
Hopefully you find it useful or informative too:
http://www.uptodate.com/contents/fibromyalgia-beyond-the-basics
Until next time... try and sleep well, eat well, be mindful, take good care.
Monday, 6 June 2016
Saturday, 30 April 2016
My biggest hate of chronic pain... is... false hope!! I cannot STAND the ups and downs of this bloody syndrome. Don't you think? Why does one have to have moments of wellness? Is it to make us feel better for those moments of illness or pain, or whatever you suffer? Is it purely to know the difference between good and bad, pain and no pain, ups and downs? It is a cruel trick is all I can say. I get duped every single time!!
I recently started Celebrex as you may know. And yes it has helped... and I had a spate of feeling brilliant, and I was duped thinking this would be it! I know that chronic means consistent, and continuous, but I always think when I'm feeling better that this is it!!!.... Forever the optimist, has its downfalls. I didn't think that I would feel fire in my blood again. Why? I don't know. I thought that I had found my answer. My drug. My somewhat positive sway on my chronic journey.
Maybe I'm being selfish, thinking that it would work indefinitely? I know, I know. It is a flare up but because I was sure that this was the answer it was so unexpected... I actually was in denial. I was telling my husband "I don't know what's wrong", "I feel tired", "Maybe I'm coming down with something"... ha yeah right. No - it is the dreaded flare up. The fire was back. Nights of laying there thinking this too will pass. And yes, over time it does but it still doesn't feel good while it is happening. I guess the power of the mind truly does have its time. After a couple months of feeling quite bloody good, believe it or not I guess my mind allowed me to forget, and the pain was new all over again. It took me a week to figure it out. Oh yeah, I have fibro! Sheesh. What a surprise!!
However, things do get put in perspective don't they?! I recently started reading another mindful book, and yes, it does help. Now I acknowledge the pain, the aches, the twitches, the soreness, and I accept that this is what it is like, and it seems once I acknowledge it, it is much easier to deal with. So there is some sense in it for me, there is some hope for me, there is something in accepting that it could always be worse, right? I say to my pain "I can feel you", "I accept that you are there", "I acknowledge you", and "I am moving on from you". I reckon everyone should try it. Its almost like if you say it, or even think it, yes yes dear, the old familiar fire, I get it, you are there, and you are annoying as hell, but I'm stronger, and bigger and braver than you, so there! It is all I can offer at this time, I guess that is why reading anything I can that can help I will! That is why each of us who reach out with a blog, or with a helping hand, or words that can support anyone else with chronic pain, it is worth the time that you do!
Grab hold of that pain, give it a shake, acknowledge it, accept it, and move on. We can all get through it together, no one knows better than chronic pain suffers how it is to look ok on the outside and feel like a bag of 'you know what' on the inside.
Thanks for all the helpful words and sharing of journeys out there! Brave on people!
I recently started Celebrex as you may know. And yes it has helped... and I had a spate of feeling brilliant, and I was duped thinking this would be it! I know that chronic means consistent, and continuous, but I always think when I'm feeling better that this is it!!!.... Forever the optimist, has its downfalls. I didn't think that I would feel fire in my blood again. Why? I don't know. I thought that I had found my answer. My drug. My somewhat positive sway on my chronic journey.
Maybe I'm being selfish, thinking that it would work indefinitely? I know, I know. It is a flare up but because I was sure that this was the answer it was so unexpected... I actually was in denial. I was telling my husband "I don't know what's wrong", "I feel tired", "Maybe I'm coming down with something"... ha yeah right. No - it is the dreaded flare up. The fire was back. Nights of laying there thinking this too will pass. And yes, over time it does but it still doesn't feel good while it is happening. I guess the power of the mind truly does have its time. After a couple months of feeling quite bloody good, believe it or not I guess my mind allowed me to forget, and the pain was new all over again. It took me a week to figure it out. Oh yeah, I have fibro! Sheesh. What a surprise!!
However, things do get put in perspective don't they?! I recently started reading another mindful book, and yes, it does help. Now I acknowledge the pain, the aches, the twitches, the soreness, and I accept that this is what it is like, and it seems once I acknowledge it, it is much easier to deal with. So there is some sense in it for me, there is some hope for me, there is something in accepting that it could always be worse, right? I say to my pain "I can feel you", "I accept that you are there", "I acknowledge you", and "I am moving on from you". I reckon everyone should try it. Its almost like if you say it, or even think it, yes yes dear, the old familiar fire, I get it, you are there, and you are annoying as hell, but I'm stronger, and bigger and braver than you, so there! It is all I can offer at this time, I guess that is why reading anything I can that can help I will! That is why each of us who reach out with a blog, or with a helping hand, or words that can support anyone else with chronic pain, it is worth the time that you do!
Grab hold of that pain, give it a shake, acknowledge it, accept it, and move on. We can all get through it together, no one knows better than chronic pain suffers how it is to look ok on the outside and feel like a bag of 'you know what' on the inside.
Thanks for all the helpful words and sharing of journeys out there! Brave on people!
Sunday, 20 March 2016
As I mentioned in my last post I was having severe pain and aching in my joints, particularly in my left hand. In past posts I also mentioned my sister suffers from chronic pain, and we both have a lot of the same symptoms, so she knows my journey... when we were last together she was off medication as she was about to have a hip replacement surgery, and she said to me she could feel severe difference in her pain when she is off her medication, which was Celebrex (which is commonly prescribed for arthritis):
What is Celebrex?
Celebrex (celecoxib) is a nonsteroidal anti-inflammatory drug (NSAID).
Celecoxib works by reducing hormones that cause inflammation and pain in the
body.
Celebrex is used to treat pain or inflammation caused by many conditions
such as arthritis, ankylosing
spondylitis, andmenstrual pain.
Celebrex is used to treat juvenile rheumatoid arthritis in children who are at
least 2 years old.
(as copied from www.drugs.com/celebrex.html)
So I thought this would be a good opportunity to book in to the doctors, and have a discussion about my knuckles and see what they thought. In past I was worried about rheumatoid arthritis as my anti-nuclear tests have come up super high in past but recent tests haven't... in all my reading this apparently can be common for even those with arthritis, it is so very difficult to diagnose.
So I booked in to a different doctor than my regular doctor but at the same centre... she is lovely and was the originating doctor to suggest I had Fibromyalgia. However, she is a bit of a naturalist in that she always suggests natural remedies, I told her 'I have tried and continue to try natural options' but I would really like to try Celebrex as my sister has huge relief from it'. She said she gathered I must have a bit of arthritis, but not the rheumatic kind. So she gave me a cream for topical pain (Capsicain) which I would try in conjunction with Celebrex (she gave me a week prescription!). Well... within 2 days I felt better than I have in years!!! Normally I struggle for at least an hour in the morning to move, to get up and to bend and so on. Like someone 80 years +! It was not fair. Celebrex worked instantly, which only confirmed to me that not only have I got Fibro, I have arthritis probably in my low spine and left hip (just like my mother did), and Fibro no doubt has been triggered by this many many years ago. I literally felt like a new woman! I thank my sister daily because I cannot believe what relief I feel.
So, I got a renewed prescription (which does cost unfortunately, some countries it is subsidised) and I've been taking it for about a month and I will never go back. The downfall is that it is an anti-flam and I do have issues with stomach pain and have had to take Omeprazole in past... but so far so good, this one seems to be very mild as far as stomach upset/pain, and I haven't had to take anything for stomach pain.
The Capsacain however, I ditched using that after the first 3 days! It didn't really provide relief, in fact it burned my skin... and you have to be incredibly careful as if you get it anywhere sensitive (eyes, corner of mouths, soft skin - anywhere... yes anywhere!!!) it hurts like hell. Not saying I put it 'anywhere' but it stays on your skin and there are many opportunities to inadvertently touch anywhere throughout the day... and it isn't pretty. Go where you may with your imagination here but just be safe! LOL.
So where does this leave me now? Still not 100% nor do I ever expect to be, but to be able to function at 80% pain free is a HUGE bonus, and the experience of 'fire in my blood' has been few and far between believe it or not... I know that I have had one experience in the past month, from at least weekly in the past... how can I not be thankful for that? I continue to experience numbness in my left hand/wrist/pinky & ring finger, and the aches in my joints of my hand are their worst at night, and continue to be mild to moderate sore during the day. I can only think this is still arthritis, and that Celebrex can only do so much, it is still better than it was...
I'm am not saying that this will work for you, but I really think that some sort of arthritis has been a trigger for me and having that under control obviously seems to help. Celebrex has been an answer, and no doubt if your trigger is the same and you have had arthritis pain or suspected even, I would talk to your doctor and see if it can work for you. I hope with my stomach issues of past it won't have an adverse affect, and I don't end up with some of the side affects regarding the lining of my stomach, but for now, I am enjoying moving freely and with less pain than ever in the several years... it is a risk I have to take right now.
Good luck out there fellow chronic pain sufferers, it isn't an easy life, but remember we are all in it together.
Sunday, 31 January 2016
It's been awhile!!
Mostly because I've tried to find the time... Between having a job, studying (yes I'm a crazy gal!), being a mum, and a wife and having chronic pain!! Yeeeeeehaw!! I'm at a crossroads and thought why not change my life, it distracts me from the pain sometimes! Oh. And also travelling to see unwell family on another continent keeps me busy too...
Speaking of travel, this is the worst my body was affected over the years, I felt everything 100 fold, so I suppose I'm guessing fibro gets worse with age?! I haven't read too much about this when I have been looking. Probably on top of regular travelling issues like swelling feet fibro has a great ol'time deep down in the system, digging to the depths into the pain thresholds--seeing how far it can push. It sure took its toll on me and I think I'm fairly young for all that jazz!
I'd like to share a link my sister sent to me as I recently told her I think I either was misdiagnosed or have have another chronic disease to contend with... Why? Well about 8 weeks ago my knuckles swelled and began aching particularly at night -- I was able to remove my rings (with difficulty, and oil!! Lol) and have never been able to put them back on... I still have one on but now will have to have it removed probably by cutting it off!!! Tragic. So I started looking up what else besides the obvious arthritis... Turns out many rhuemo arthritic patients get misdiagnosed with fibro all the time?!! Even with testing early on Dr's write high results as red herrings... So since the knuckle swelling my other hands knuckles and sometimes my foot ache and cause me severe discomfort... So this leads me to this link:
http://www.prohealth.com/library/showarticle.cfm?B1=FACEBOOK&utm_source=facebook&utm_campaign=facebook_article&libid=23535
I have yet to find a new doctor -- so I have struggled recently to cope with the pain somewhat... I'm sure that it's a form of arthritis, and it's possible and common I understand to have both an arthritis and fibro, and I suppose I just think as always it could be worse right? Always thinking of those worse off, I feel for them and yet am thankful that I'm only in as much pain and discomfort as I am!!!
Last time I wrote I said doctors were thinking my numbness was due to my low b12, but reading further into rheumatoid arthritis this is a common symptom, and it would explain a helluva a lot... No surgery has been successful, I take supplements for b12 and continue to struggle with the constant numbness at night usually, which is when the knuckles seem to ache the most... However so interesting to find out that doctors had me on omeprezole for my tummy issues and also for my sensitivity to NSAIDs - but did not put two and two together that this can cause lowb12 as the antacids stops absorption of b12, yet they've continued to prescribe me... So how does this work? How do doctors seem perplexed by these symptoms, and seem to be part of the cause... Why do they do loads of test and tell you you have low b12 and that this is causing one thing or another but not know that this is a problem. I had to find this out on my own... I'm feeling let down yet again by the general medical industry, actually even specialists! No one seems to communicate about their patients to one another... Quite simply put... I'm over it! I wish to find a doctor who actually pays attention and knows that a+b=c. Heaven knows that they get paid enough for their supposed expertise.
I guess I started to blog to share and help... And don't wish to be a whining snivelling blogger who just moans about life as a chronic pain sufferer. Which I hope I don't sound like, so as always I hope that you can find something helpful, or even have some answers to share on this possibly similar pain journey we are on. Thanks for being a reader and thanks for letting me read!!
Mostly because I've tried to find the time... Between having a job, studying (yes I'm a crazy gal!), being a mum, and a wife and having chronic pain!! Yeeeeeehaw!! I'm at a crossroads and thought why not change my life, it distracts me from the pain sometimes! Oh. And also travelling to see unwell family on another continent keeps me busy too...
Speaking of travel, this is the worst my body was affected over the years, I felt everything 100 fold, so I suppose I'm guessing fibro gets worse with age?! I haven't read too much about this when I have been looking. Probably on top of regular travelling issues like swelling feet fibro has a great ol'time deep down in the system, digging to the depths into the pain thresholds--seeing how far it can push. It sure took its toll on me and I think I'm fairly young for all that jazz!
I'd like to share a link my sister sent to me as I recently told her I think I either was misdiagnosed or have have another chronic disease to contend with... Why? Well about 8 weeks ago my knuckles swelled and began aching particularly at night -- I was able to remove my rings (with difficulty, and oil!! Lol) and have never been able to put them back on... I still have one on but now will have to have it removed probably by cutting it off!!! Tragic. So I started looking up what else besides the obvious arthritis... Turns out many rhuemo arthritic patients get misdiagnosed with fibro all the time?!! Even with testing early on Dr's write high results as red herrings... So since the knuckle swelling my other hands knuckles and sometimes my foot ache and cause me severe discomfort... So this leads me to this link:
http://www.prohealth.com/library/showarticle.cfm?B1=FACEBOOK&utm_source=facebook&utm_campaign=facebook_article&libid=23535
I have yet to find a new doctor -- so I have struggled recently to cope with the pain somewhat... I'm sure that it's a form of arthritis, and it's possible and common I understand to have both an arthritis and fibro, and I suppose I just think as always it could be worse right? Always thinking of those worse off, I feel for them and yet am thankful that I'm only in as much pain and discomfort as I am!!!
Last time I wrote I said doctors were thinking my numbness was due to my low b12, but reading further into rheumatoid arthritis this is a common symptom, and it would explain a helluva a lot... No surgery has been successful, I take supplements for b12 and continue to struggle with the constant numbness at night usually, which is when the knuckles seem to ache the most... However so interesting to find out that doctors had me on omeprezole for my tummy issues and also for my sensitivity to NSAIDs - but did not put two and two together that this can cause lowb12 as the antacids stops absorption of b12, yet they've continued to prescribe me... So how does this work? How do doctors seem perplexed by these symptoms, and seem to be part of the cause... Why do they do loads of test and tell you you have low b12 and that this is causing one thing or another but not know that this is a problem. I had to find this out on my own... I'm feeling let down yet again by the general medical industry, actually even specialists! No one seems to communicate about their patients to one another... Quite simply put... I'm over it! I wish to find a doctor who actually pays attention and knows that a+b=c. Heaven knows that they get paid enough for their supposed expertise.
I guess I started to blog to share and help... And don't wish to be a whining snivelling blogger who just moans about life as a chronic pain sufferer. Which I hope I don't sound like, so as always I hope that you can find something helpful, or even have some answers to share on this possibly similar pain journey we are on. Thanks for being a reader and thanks for letting me read!!
Saturday, 17 October 2015
It has been ages.
I have so much to type - but it will have to be after Monday!
The latest visit to the Neurologist was so enlightening! And as I have typed before... it doesn't give me great assurance or belief in our medical systems... we are now pursuing the lowb12 route, I have another b12 test on Monday. After that I will be back and if it is low, I'll tell you the next step, if it is normal... then I don't know what!!!
Meantime - check out some of the b12 deficiency symptoms, they tie in with lots of Fibro symptoms, not saying you have one or the other, because as my latest Neurologist said you can have more than 1 syndrome or disease, and unfortunately Doctors quite often put people with Fibro in the Fibro box whatever you may be presenting.
Google low b12. Get tested too, just to be sure.
I'll be back soon!
I've missed this release!
I have so much to type - but it will have to be after Monday!
The latest visit to the Neurologist was so enlightening! And as I have typed before... it doesn't give me great assurance or belief in our medical systems... we are now pursuing the lowb12 route, I have another b12 test on Monday. After that I will be back and if it is low, I'll tell you the next step, if it is normal... then I don't know what!!!
Meantime - check out some of the b12 deficiency symptoms, they tie in with lots of Fibro symptoms, not saying you have one or the other, because as my latest Neurologist said you can have more than 1 syndrome or disease, and unfortunately Doctors quite often put people with Fibro in the Fibro box whatever you may be presenting.
Google low b12. Get tested too, just to be sure.
I'll be back soon!
I've missed this release!
Sunday, 9 August 2015
It has been far, far, far too long! I have missed blogging! Every day I think I will get a chance to blog, and have a look at some other Fibro blogs and then the time disappears...
Part of the reason I wanted to blog today was because I was thinking about my blog awhile ago when I wrote about 'fire in my blood'. When I have a rough night I just have to say to my hubby in the morning - 'fire' last night... he is so understanding. I wonder how many people are without this kind of support?! It worries me. I don't know how I could live this fibro life without my lovely hubby!!
I have had some good weeks and bad weeks as you all will know out there, that 'such is the life' of chronic pain... I tossed and turned all night trying to find a comfortable position and decided that it wasn't just fire in my blood last night... it was dull daggers in and out of my joints! I'm not sure if that is progression in pain to fire in the blood or equal?!
After all these years I still can't get my head around the word 'chronic'... on those really good days I still think, 'yay, I'm healed' but it is oh so temporary. Why do I think that it is over? When it won't ever be over?! And so the meaning in the dictionary says: lasting a long time: of a disease, deep seated or long continued. So it is true! How can I not remember that this is the way it goes... maybe fibro fog gets the best of me on those days and I forget that chronic means it isn't going away?! Isn't 'deep seated' so very, very true too. It is the worst kind of deep, deep in the blood, deep in the bones, deep in the joints, deep in every cell you feel the sharp edge of it all.
I wonder, in 2005 there were 5 million Americans affected by fibromyalgia, how many more in 2015?! That isn't even worldwide! In searching statistics I found this site, but I am sure there are plenty more out there that can determine how many people are affected.
http://www.cdc.gov/arthritis/basics/fibromyalgia.htm
So strange that with so many affected that there is still so much vagueness surrounding this #2 rheumatic condition next to Osteoarthritis at #1. I say, what is up with that??? I suppose we can only hope that over time there will be a successful and passionate scientist who can find what we need to get rid of chronic pain and illnesses!!!
Part of the reason I wanted to blog today was because I was thinking about my blog awhile ago when I wrote about 'fire in my blood'. When I have a rough night I just have to say to my hubby in the morning - 'fire' last night... he is so understanding. I wonder how many people are without this kind of support?! It worries me. I don't know how I could live this fibro life without my lovely hubby!!
I have had some good weeks and bad weeks as you all will know out there, that 'such is the life' of chronic pain... I tossed and turned all night trying to find a comfortable position and decided that it wasn't just fire in my blood last night... it was dull daggers in and out of my joints! I'm not sure if that is progression in pain to fire in the blood or equal?!
After all these years I still can't get my head around the word 'chronic'... on those really good days I still think, 'yay, I'm healed' but it is oh so temporary. Why do I think that it is over? When it won't ever be over?! And so the meaning in the dictionary says: lasting a long time: of a disease, deep seated or long continued. So it is true! How can I not remember that this is the way it goes... maybe fibro fog gets the best of me on those days and I forget that chronic means it isn't going away?! Isn't 'deep seated' so very, very true too. It is the worst kind of deep, deep in the blood, deep in the bones, deep in the joints, deep in every cell you feel the sharp edge of it all.
I wonder, in 2005 there were 5 million Americans affected by fibromyalgia, how many more in 2015?! That isn't even worldwide! In searching statistics I found this site, but I am sure there are plenty more out there that can determine how many people are affected.
http://www.cdc.gov/arthritis/basics/fibromyalgia.htm
So strange that with so many affected that there is still so much vagueness surrounding this #2 rheumatic condition next to Osteoarthritis at #1. I say, what is up with that??? I suppose we can only hope that over time there will be a successful and passionate scientist who can find what we need to get rid of chronic pain and illnesses!!!
Thursday, 2 July 2015
Yesterday marked the day that I re-realised how important it is to have a Dr that believes that Fibromyalgia is a real syndrome. I have been waiting to see the Neurologist that prescribed Gabapentin to me and re-ordered the nerve conduction study. He said to me and wrote in a letter to the Dr that we would meet again after the results to discuss our next move. So I waited, and waited, and waited... I ignorantly thought that I was in the system and it was just taking a LONG time to get in to see him, which usually does happen, YES about a year wouldn't be unheard of in our Public system. I queried this with the Dr via email and I did say there is no point in making an appt to see him to just 'query' where we are at with my re-booking of the Neurologist... he agreed!!! He even said there is no point. So in my stubborn way I had to wait until I 'needed' to go to the Dr for something - so that I didn't feel like I was wasting yet another $45! I'm not having a moan here I promise - I just want to prove a point to everyone that you need to see the signals and not feel bad for changing Dr's, because for some unknown reason I have felt loyal and I shouldn't if I am not going to be taken seriously!!!
So to make a long story short... I booked in because I hurt my shoulder lifting heavy boxes... made my appt... and incorporated this sore shoulder with a discussion about where we are at with my 'real life long problem'!. Once again - I was let down. The Dr was condescending in a way that made me sad for all of his patients that might have a chronic pain disorder that didn't have a proper diagnoses model. He wasn't even able to 'say' that I had Fibro even though I have been properly diagnosed by a Rheumotologist. When we were discussing my issues, again, he was asking me exactly how it felt - how can you describe it??? I tried to distinguish between my all over aching from the numbing and tingling in my hands because that has been my real problem lately, the one that does wake me or keep me from getting proper sleep at night! He looked up the letter from the Neurologist (which I asked someone to do months ago) and YES indeed he said he wanted a follow up after my last nerve conduction... and my Dr just 'filed' the letter when he got it because it basically said that my test was normal (in that they don't think I need another carpal tunnel surgery)... WTF???? I had this test done in Aug 2014, he would have gotten my results around then! I've been waiting since then just thinking I was in the system 'waiting to see the neurologist'. Hence my huge ramble today... don't take for granted that you are being watched out for in the system, because you are not!!! I kind of did trust that my Dr wouldn't just 'file' my result and that was it. So what? I just carry on living with prescriptions and wander along with the numbing and tingling, possibly not even associated with Fibro? Isn't it great to just have all your symptoms just dumped in the Fibro box...
My husband said to me ages ago change Dr's. I guess I felt like I had unfinished business with him. I kind of did. It just solidified to me that even today, after all the available studies and science behind Fibro that it is a recognised problem... but I guess for my Dr it isn't and it is just a central nervous system disorder that doesn't have a name.
Next appt is to see the Neurologist for my follow up, Heaven knows how long that will take! They usually take 6-12 months to get in. Meantime I am to increase my Gabapentin and continue with Tramadol for flair ups, Panadol for everyday pain, Omeprazole for the tummy upsets (links to FMS), GF because some of my symptoms might be from an allergy or not, and now anti-inflams for my shoulder bursitis, I am literally a walking PILL BOTTLE, anyone else feel like that LOL!!!
I know you can all relate, that is why I feel like I can type all this waffle, because I know that you will read it and I can see your head nodding in agreement because we have all or are all going through this together!
This is just another day in the life of right? Meantime I am reading a book that I am hoping will help me on my journey, The Power of Now by Eckart Tolle! It is calming me (yeah right you say after that big complaining blog! LOL) and I feel better generally! The positiveness and enlightenment will make the difference for everyone who reads it! Give it a shot!
https://www.eckharttolle.com/
So to make a long story short... I booked in because I hurt my shoulder lifting heavy boxes... made my appt... and incorporated this sore shoulder with a discussion about where we are at with my 'real life long problem'!. Once again - I was let down. The Dr was condescending in a way that made me sad for all of his patients that might have a chronic pain disorder that didn't have a proper diagnoses model. He wasn't even able to 'say' that I had Fibro even though I have been properly diagnosed by a Rheumotologist. When we were discussing my issues, again, he was asking me exactly how it felt - how can you describe it??? I tried to distinguish between my all over aching from the numbing and tingling in my hands because that has been my real problem lately, the one that does wake me or keep me from getting proper sleep at night! He looked up the letter from the Neurologist (which I asked someone to do months ago) and YES indeed he said he wanted a follow up after my last nerve conduction... and my Dr just 'filed' the letter when he got it because it basically said that my test was normal (in that they don't think I need another carpal tunnel surgery)... WTF???? I had this test done in Aug 2014, he would have gotten my results around then! I've been waiting since then just thinking I was in the system 'waiting to see the neurologist'. Hence my huge ramble today... don't take for granted that you are being watched out for in the system, because you are not!!! I kind of did trust that my Dr wouldn't just 'file' my result and that was it. So what? I just carry on living with prescriptions and wander along with the numbing and tingling, possibly not even associated with Fibro? Isn't it great to just have all your symptoms just dumped in the Fibro box...
My husband said to me ages ago change Dr's. I guess I felt like I had unfinished business with him. I kind of did. It just solidified to me that even today, after all the available studies and science behind Fibro that it is a recognised problem... but I guess for my Dr it isn't and it is just a central nervous system disorder that doesn't have a name.
Next appt is to see the Neurologist for my follow up, Heaven knows how long that will take! They usually take 6-12 months to get in. Meantime I am to increase my Gabapentin and continue with Tramadol for flair ups, Panadol for everyday pain, Omeprazole for the tummy upsets (links to FMS), GF because some of my symptoms might be from an allergy or not, and now anti-inflams for my shoulder bursitis, I am literally a walking PILL BOTTLE, anyone else feel like that LOL!!!
I know you can all relate, that is why I feel like I can type all this waffle, because I know that you will read it and I can see your head nodding in agreement because we have all or are all going through this together!
This is just another day in the life of right? Meantime I am reading a book that I am hoping will help me on my journey, The Power of Now by Eckart Tolle! It is calming me (yeah right you say after that big complaining blog! LOL) and I feel better generally! The positiveness and enlightenment will make the difference for everyone who reads it! Give it a shot!
https://www.eckharttolle.com/
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