Currently I am in hospital. I have been here 11 days. Prior to admission I was bedridden at home for six weeks being reviewed by my GP ( I think you call this MD in the States)
Thevday before admission I knew I was in deep trouble as I sat wheelchair waiting for my daughter to wheel me inti the Drs appt. I thought I’m going o fall forward and out if this her chair andi dont have the energybto put my arms out to break the fall. I have burningbpain across the shoulders and own both arms. My arms feel like lead. I have pain down both legs from the knees downwards and pain in both feet as well as Pindars and needles in the feet. My scalp,hurts. It feels like someone is driving a bed of pins intonit that’s th sensation. My vision is affected andcforget remembering anything at all. I’m writing notes as only a fellow Fibro person will understand. In my current state there is no way I would drive ny car. I’m on long acting morphine in the back round with two hourly top ups of short acting morphine. I’m on a tapering regime ofnprednisone was on 80mg a day currently down to 20mg. I am on Other meds but nit for
I have mini melts downs where I cry, I cry because the mountain this time looks too hard and too steep. I am not suicidal but think death would be preferable to what I’m going through. On a pain scale of 1-10 with 10 being off the wall I’m sitting at about 9-9.5. When I was admitted it felt like 150! But I think that was more around being in my own with it. I have had three falls during this time when it seemed the legs didn’t want to work. Normally I walk and run unaided. Currently I’m using a walking frame to get from bed to toilet and any further distance requires me to use a wheelchair.
Imwas working 40 hours a week at the beginningbif this. Today I sat up out of bed for an hour in a tv room doing nothing but sitting, I was wheeled back to bed and was totally depleted, exhausted I didn’t have the strength to lift my arms up and needed assistance to get from the chair to the bed where I still am. I have been trying to push the pain meds further apart in an endevour to beer progress. The plan was going to be that I move to rehab hospital ward but this was not an option as my sister in law is charge nurse there and there are some messy legal things happening in my family ( not going into all the details) but suffice to say it was not an option for me. It seems to me that Fibro is almost what they call stuff that’s in your head…that’s how I feel about it. This is not in my head. I know I am still very ill. I couldnt work for an hour a week let along 40
hours. The exhaustion is impossible to describe, I don’t have anythingnleft to give best describes it. I wonder if I have chronic fatigue syndrome going on as well?
Please, please help me. I’m desperate for some comfort and some ideas on how to get well what I should do, what I’m missing, how long this will take. I’m desperate for some HOPE to be sown back into me. I’m desperate to know that I am not alone. I’m desoeratevto hear how others have clawed their way back to life. I do feel like dying would be better than being where I am. I’m not suicidal again I state that. Before I got ion hospital I was waiting, holding on to go to the bathroom until I could hold no more and during the final two weeks at home this was sometimes 3pm in the afternoon. I would go to the bathroom grab a drink sitting on a stool at the bench then usually by then the pain was too bad for me to stay and get food. That’s where it was at. I know there will becspelling errors and mix ups in this post bu I don’t have the energy to re read it and TRy to correct them so apology in advance!
Currently I am in hospital. I have been here 11 days. Prior to admission I was bedridden at home for six weeks being reviewed by my GP ( I think you call this MD in the States)
I am sorry that you are having such a hard time! I hope that they are testing you for other things besides just Fibro because it sounds like something else may be going on with you. I do not have a lot of advice because I have never had a flare that bad. I have the past three weeks not been able to eat because of something with my stomach that they can not find anything wrong with so do understand your frustration and pain. Try keeping a journal of your pain and what else you are feeling when it flares. We have to advocates for ourselves. You are in my prayers and remember we are always here to support you.
Love and gentle hugs.
Hello Lindy-Loo. Welcome to our group and I'm glad you've joined us. Like you, many here have suffered terribly with their fibro and felt so alone in it. That's why we exist. To help others know that they aren't alone and there is hope.
I'm sorry that your pain and fatigue is so great. It certainly sounds like you may have chronic fatigue syndrome as well as fibro. i've been that tired before but not for great lengths of time, except when working. Therefore, I want to ask you a question:
Have you been tested for other auto-immune illnesses? People with fibro oftentimes also have an auto-immune illness as well as fibro. Or a connective tissue illness. Or chronic fatigue syndrome. Or IBS or migraines. I hope you can see where I'm going with this. You may well have something else besides fibro going on inside of you. So it would be in your best interests to be tested for Lupus, MS, RA and PsA. I'm willing to bet my bottom teeth that you at least have chronic fatigues syndrome. Mind you, I am not a doctor and not a medical personnel so i'm not qualified to give out a diagnosis. It's just my layman's opinion on the matter.
I hope that by coming here and reading the discussions and blogs that you can feel some comfort and caring coming through to you, even as you lie in your hospital bed. And yes, go ahead and cry if you must. Fibro makes us so miserable and takes away so much from us that it's breathtaking. But we have to remember that we are still gifted with being alive and able to do things on our good days. And with each day of life comes hope - the hope for a cure, the hope for medicines to control/eliminate the pain, the hope for a better future. And lately there has been some intriguing research done in regards to fibro, so I think that we will be on the very of at least a partial solution in the not too distant future.
Just remember, Lindy Loo, you are NOT alone, you are NOT losing your mind. We believe you. In fact, I know there was a discussion a few weeks ago about how some fibro suffers even have hair that hurts, which reminds me a lot of what you brought up about feeling like pins and needles are in your head. And the feeling of lead? I get that too, in my legs. Many of your symptoms sound like fibro. But please do get checked for the other illnesses too, to rule them out.
You can climb this mountain. Yes, it is bigger and deeper than before. But you can do it. Who knows, maybe fibro's a test to us, something like what Jonah faced when swallowed by the whale. I'm not overly religious but i do wonder sometimes. Well anyway, even if not, we still can summon up the energy to keep on keeping on. So long as we have the right diagnosis and medicines. The hill does feel high and deep and impossible to get a toe hold in but once you do it, you've learned a bit more about fibro and how to control your emotional reactions to it.
Please do come back and share with us. We are here, we won't bite, and we want to help you feel like a member of the human race again, as you so richly deserve.
Yes there were stressors bubbling away inn the back ground. I had my mother living with me for 18 years and she passed way 5 years ago. One brother has decided ftervthus to challenge the will, my mitgerchad put money into my house in order we provide space for her to live. Three independent legal opinions are that he will be unsuccessful so I’m not worried about the money. I care more about his need to donthis, it is his legal right but why, and why after five years? Go figure. Drs here wanted me to go to rehab wards from here prior to going home, I agree I don’t actually feel well enough to be home alone yet. However that brothers wife is the charge person for the rehab and the stress of being around her is too great for me to contemplate. Told the medical team exactly why but with bed pressure it looks like it was there or home early this week. Do I feel as if I can cope at home, the answer to that is a resounding no. Possibly discharge will beceralybthis coming week. I have agreed to accept meals on wheels ( a generally for the lderlybwhere a hit meal and desert is delivered for a small charge Monday - Friday). Inthinknthey wanted have thiscas in had stopped eating because it was too painful to wait from bed to toilet, quick drink inn kitchen sitting on a barstool. I couldnt carry anything back to the room and then I was in too much pain
and too tired. Some of the issues around being able to carry things have been addressed with aids like a trolleybthat carries stuff which is also a walking frame.
As for testing for other things I have had a lot of tests scans and stuff since being here. I do have polymyalgia rheumatica but that s not inn flare ia blood results. I also have a heart condition called long qt but all is well with that. I have nit been diagnosed with hronic fatigue but I am even feeling past that I have nothing absolutely nothing left to give. I feel like I’m running on empty.
I asked the doctor when he would see me likely back at work he said notvwithin the next three months. I know that I couldnt even do an hour a day at the moment.
I struggled yesterday and today to sit in a tv lounge for an hour, and why did I do that, to try to see some positive progress.
I have appreciated hat you have taken time to respond to my message. I’m sore very tired but I do not need to be alone with this.
I am so sorry to hear you are in such pain and fatigue. I hope they are checking for other issues as I find when I have anything, even a simple cold, that causes horrible flare ups ! Have as much faith as you can muster that this too shall pass. Everyone here has been horribly sick at one time or another and they are all understanding and kind. I don’t know if you believe in God or a higher power, but it helps me through the difficult times. When I don’t know what to pray, I say the Lord’s Prayer or simple Thy Will Be Done over and over. I picture a happy memory, my dad and I paddling down river in his canoe and breathe. We are all with you holding your hand through this ! Get well soon and gentle hugs to you
Tired - poor spelling and checking sorry
Dear Lindy Loo,
It's good to hear from you! Just so sorry that you are feeling so wiped out! I am very hopeful that the hospital will be able to do something for the CFS, and get you well enough to navigate again! I'm so very sorry you're down, but you're in good hands! I do not have CFS, though I can be chronically fatigued, and it;s from autoimmune and pain.
No apology needed for spelling errors, I make enough of them, that;s for sure! We have a group here within this group for fibro and CFS, perhaps you could find something in there that may help. I'll see if I can find the link for you.
I just read or heard that there is a med they give CFS patients in the am to get them going and thought of that as soon as I read your post and looked at your profile page. I'll see if I can find it now for you.
This info is under 'other drugs' they are called psychostimulants and can sometimes help with the extreme fatigue. The most important thing for you to know is that you're not alone, there are over 2.000 of us! That's a pretty big fan club, you know!
Put all the worries and stresses in a big box, one with a lock on it, so sturdy that NOTHING can get out and lock it up, and just put your mind to more pleasant, positive things and know that you can get better, be better, live better. I have no doubt that you are ill, and I do know that negative things can just intensify everything!
I'm sending love and hugs your way!
Talk to you tomorrow,
Hi I pray and hope you get better soon. Hugs.
Here I am again, after an hour and a half of sleep pain wakes me. It seems when I move in my sleep I’m awake with the pain. I think this is when the body moves in it’s sleep. I’ve just had morphine but it takes a little while to kick in. I so try not to take it wherever. Possible. The pain team tell me it’s ok but I think of tolerance and trying to tolerate pain as much as possible. The Internet is a godsend, I use it as distraction.
I try so hard, intry to tolerate the pain, try to remain positive and people often say you’re one of the most positive people I know ( I’d like to use this place to not have to be positive all the time). I’d like to be real here not to have to pretend I’m coping when I’m not. I don’t mean I want to solicit sympathy no it’s just being real. I work in a high pressured job most of the time, love my work and feel I make a difference in my role. For my jobs part it pays me well, is a two minute drive from my home and I get a free car park almost at the door. However as I said it is a high pressured requires me ro be quick thinking , able to handle emergency and other messy situarions. Yea it’s a stressful job. I want to wait until I am well again and look at whether or not I would be able ro do the role on reduced hours. This will also result in a pro rata pay reduction. I can’t decide whether to push myself and keep doing the 40 hours a week or whether to reduce the role to 30 a week which would mean a reduction in salary by a quarter. I am able to work from home some of the time and o wondered about doing the 10 hours from home each week which would mean I could lay up on the bed and read up policy papers which might be better for the body. what to do, what to do. All I know is that I would like to make rh role work for me, taken care as best I can the body at the same time. The other thing I failed to say is there are many drugs I can’t take because I a.so have a heart issue called Long QT. So a lot of NSAIDS I can’t take I also can’t have Tramadol and many other drugs usually that would be used I. Flares. So treatments are often limited by the ones they can user.
Dear Lindy-loo: So sorry to hear that you’ve been having a terrible time and are hospitalized. I agree with you - it’s the best place for you right now. With your past falls, you need to be where people can help you.
It sure is hard to stay positive when you feel so much pain, but you must have goals you want to meet. You asked the doctor about working?! That’s a good thing - but why not start out with small goals and then go big. Small feats like walking to the kitchen and back, sitting upright for an hour and then increasing it by 5-10 minutes. It’ll give you positive feedback to continue.
Going to think and prayer healing messages your way - you’re not alone and I’m sure many will do so also.
God bless you, Susan ~ hugs~ Sandi
Since rehab in the hospital is not an option do they have nurses and physical therapy that can come to your home? I looked to see where you are from and I am sorry I do not no more about health care in your country to be of more help. I hope you are better soon and the test they have done will find something that they can help you with. I will be thinking of you.
Hi Lindy Loo!
I'm sending you a great big hug today, hope that you are feeling at least a bit better!
I'm pulling for you!
Hae Lindy Loo, it's ok to not be positive all the time. That's why this web site exists. You are suffering, dear friend.
From the sounds of things I would bet that this has been brought on by the stress with your brother. I am so very sorry. My parents both passed away in the last 4 years. This brought on the worst of my fibro and chronic fatigue. I have never been hospitalized, but had days when I didn't know how I could possibly get through.
I am here to report that right now I am doing substantially better. I, no, we ALL want you to believe and to know that you will get better. This is a real low spot, but you will get better.
You are in my thoughts and prayers. You keep your sweet chin up. When some time passes and the legal issues with your brother are past you will see improvement...even before then. Sometimes, just realizing and writing about things helps.
It’s always good to know others are on your side! Feeling more positive because I am now in contact with peers through this group. There’s something about peers who know what you mean through lived experience. Tofay I have had ewuipment delivered to my room. I’m hopeful ofba discharge home today. Physio and OT have been organized for me n the community yes. Meals on wheels will begin tomorrow all going to plan. I think inwill be able to cope now with the stuff now at home and here ready to go home. I have just seen the pain team, they have tokd me don’t try to push yourself to reduce the morphine. I will be guided by them and they are saying no longer than 3 hours between doses. I will followvtheir guidance as that’s their speciality. I had pushed this to 6 hours over the weekend but it was really hard doing that. I’ve asked my daughters permission to use her as an outside sounding board for the next step on my recovery journey. She has agreed as I knew she would but didn’t want tontake this for granted. Today I’m feeling hope, I’m feeling I can do this. A small. Change in focus for me. The pain team have recommended I do an achievement diary and put thing like the hours sitting up, in it as a visual path where I can see progress…a great idea which I can lay claim to. Sorting for myself. I will do this.
I have spent time gathering together cook in the mugbrecipes, mainly they are cake ones but actually I enjoya bit of cake! I do have Mac n cheese recipes too. So I’m moving maybe not as fast as the impatient me would like but I am moving.
I am still exhausted but there is a pin head sized amount if energy there, yay. I will need that for getting home so won’t do any sitting up today.
Great big soft hugs, Lindy Loo. You can do this!
Ok I have a plan now. I am going home later today. All of the supports are in place ro assist this happening for me. I’m feeling positive and while not ideal going from hospital to home without the middle srep of rehab it is the right way for me amd they accept the difficulty I would ne I. If I went to rehab. I think it would hide rather than help me. I will definitely be in touch via the board here. It helps knowing that I am not alone in fact it helps more than perhaps you know.it also helps knowing that you won’t judge me I my ignorance or even my venting should that be necessarey, I am by nature very jndependant sometimes ri my detriment. I am willing to reach out and you have all shown through your support you are willing to reach in tomgrab my hand as needed so thank every one of you for being there.
Just read my reply ad there are much less spelling errors etc, I think my first post shows the level of exhaustion I get to at times!
Oh you are doing SO much better! It's not just our support, though it's priceless to receive, not only the great medical team you have, it's you, and that magical feeling of HOPE!!
I think the progress journal is a fantastic idea, thank you for that idea, I think it would benefit all of us to do this!
Your pain team sounds very good, and I'm so glad. I take morphine too. In fact I was just told by my Rheum to cut down on the anti-inflammatroy and take more morphine if I need to. Who expected that??
Even though all of my MDs are vitamin knowledgable, my Chiro is brilliant. For fatigue, besides great Multi's and cal/mags, potassium added D3, the liquid B12 is really a boost when I'm exhausted, and the big one I wanted to tell you about is to soothe and boost your adrenal glands
http://www.naturalhealthyconcepts.com/adrenogen-270-p-metagenics.html Of course I encourage everyone to check with their Dr first, It's something I wanted to share with you.
I'm on the med sensitive side, I need to take 25 mg of Phenergan before Morphine, to keep it down, and also have to take 25 mg Benadryl. The over all body itching is not too bad, but my nose itches so bad, I rub it until it's brusied and sometimes bloody! ha! Attractive, huh?
By no means do I know everything or have answers to everything, just been going through the trial and error for so long that I share what works for me, so everyone still believes that there are always possibilites out there for them!
I'm so glad your daughter will be helping you out, that means the world, I know!
It's been so good getting to know you. I look forward to hearing from you, and am anxious for all of your improvement! I hope you have a very restful night, though it's probably daytime in Australia, so have a good day too!
Looking forward to hearing from you!
I'm STILL pulling for you!