Quick question. Does anybody get paranoid that there must be other things wrong with you because you feel so ill?
I have been paranoid since my diagnosis in 2016 that it might be MS instead. My doctor says that fibromyalgia really can make you feel this bad, and I tell myself that I'm being silly, but it's always there.
Every time I can't get up and sleep for days, I start thinking I've got something else.
I'm bipolar, anxious, arthritic, have menstrual migraines and raynaulds as well as fibromyalgia, so don't really want anything else 😭
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Jacksono
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I know I'm overthinking/overreacting. It just creeps into my head every so often. I've just slept for 24 hours, been up and hour and want to go back to sleep, so I'm feeling sorry for myself today and just wondered if anyone got paranoid and how they cope/talk themselves out of it. Sometimes, I just can't believe I can feel this bad. I was diagnosed nearly 10 years ago and although the literature says it's not a progressive illness, the last two years I've got so much worse. Had to leave a part time job and can only drive to the shop and back, when I used to work full time and drive to my sister's who lives 2 and half hours away.
I can’t speak for everyone with fibro but I disagree with your literature as I was diagnosed decades ago and I am very much progressed in this condition. I am living proof of it.
Depending on where your literature comes from and the date it was published things are still being discovered everyday about illnesses…so no one publication has all the answers.
I’m so sorry you feel so badly. What’s your worst symptom atm.???
no…I don’t think you are overreacting or overthinking your symptoms You’re still fairly new with this diagnosis
I used to clean everything in my house from top to bottom literally as I had a baby with severe allergies and asthma and washed 27 loads of laundry everyday…really 27 It’s no wonder I worsened as the stress of that alone on my body was enough to make me worse
Now I just think about all I need to do and can’t anymore and it wears me out just thinking about it.
🤣🤣🤣 Good one! I have that issue since I'm so direct. Most folks do not want directness. They'd rather you talk around a subject. I can't stand that and it leads to all sorts of issues. Cut through the crap, ask directly, state something you need or want, whatever. Playing games isn't communicating. Just the way I operate. I saw something about why I'm this way but can't remember where our what character /personality thing it was. 🤷🏼♀️
You are like me…I don’t want to drag things out by indirectness. I’m diplomatic about it don’t like to jam it down your throat but when others beat around the bush it can be misunderstood and wow what a mess that gets to be!!! 😱
Being direct is uniquely you which is wonderful. What a dull world we’d be in if everyone were the same.
You are a wonderful person honeybug ❤️ thank you for replying.My doctor also says it's not progressive, just ups and downs, but everyone I speak to with fibromyalgia, who have had it long term say it definitely is. I met a woman who used to run her own business. She now has to walk her dogs using a mobility scooter as she can only just about walk down the road. What the GP says and what suffers say are completely contradictory.
There is a new bit of research that has found links to fibromyalgia being an autoimmune illness. I hope they research further as I think we have been fobbed off and passed around too long.
For me, pain has steadily increased over the years, but I guess the thing that affects me most is fatigue. It sounds odd, but you will know what I mean when I say, some days, like today I feel so tired and heavy, my legs can't hold my weight (and I'm a healthy weight). Just lifting an arm or leg seems to be too tiring. And I'm not a person who can sit about. So personally (and I imagine it is different depending on how you are as a person) I can get through the pain, but the fatigue is destroying me xx
It’s 5:10 pm here, bedtime for you- well 10:10pm your time, I must answer this now or I’ll forget.
Awww, thank you for your kind words hun.
Most doctors over here still aren’t v familiar with fibro. 50 + years ago when I was diagnosed with FM the standard test at the time was the pressure points test plus a discussion of symptoms and how they affected/effected my life. Fibro was new on the diagnosis list and nearly every doctor denied it existed.
I was given a “ severe fibromyalgia “ diagnosis and literally told to come back as needed. There was no existing literature, the internet was a far off future invention, and no other place/people to contact to obtain info.
You were literally left to your own experiences and devices as the clock ticked away.
I’ve never been one to be scared of my diagnoses as I know that cancer is coming for me due to all the family/relatives lost from it and genetic predisposition for it. I made my peace with it coming for me at age 10.
As with all of my conditions (averaging 1 per year) as the years passed by I just learned to toss each one on the heap and go on with life. So my experience is probably unique to everyone else’s because I’m usually older. I’ve had to learn to cope over time.
It is quite possible that your GP isn’t up to date on the latest data about fibro. I do agree there times of less/greater intensity with it. Some have stated that theirs went into “remission “…I think that truly must be the less intense period because it’s life long and without cure presently.
I also believe that it possibly is autoimmune related. It’s an inflammatory condition which relates to autoimmune category…these are based on my personal experiences and summaries.
At one point I had about a year where I had to use plastic flatware because the metal ones were too heavy and painful for me to use. My hubby will confirm this as he witnessed it.
Try not to let anyone dr or layperson tell you that your experience isn’t your truth. Should you experience that treatment, I’m sorry, I’ve lost count at the number of times that happened to me. Ignore the naysayers and push on to a GP or medical professional who WILL listen to you and take you seriously…those professionals do exist
Hello, I think we do get times when we think is this just fibro ?it can certaintly make us feel pretty rough at times, I too have thought what’s else is going on when I’m getting constant bouts of poorly days, a good reply from Honeybug ,so many many symptoms 😞you have other conditions as well which makes life harder for sure, it does help too chat here and reading other members posts I find helpful and sometimes reassuring . Do speak too your doctor /practioner nurse at your surgery ,they need too know and sometimes we need too be heard 😉they have a duty of care and sometimes it can be a change of meds , helpful advice, a review say in a weeks time too see if any progress. I did and do suffer sometimes with anxiety and it took a long time till I was put on the right medication too help me move forward , take care xx
Hi Jackson, Fibro is different for everyone. It can be progressive'ish? and Drs are often clueless. Often we start out just fibro and progress to injuries etc.
Tum tum issues lead to poor nutrition leads to... On and on more issues? Oh and mental health suffers too if we can't absorb certain nutrients. If you feel anxious and paranoid, it can be you are short on vitamins etc? Who knows? But there are lots of reasons for feeling out of sorts mentally. It's just one area you can look at?
Poor sleep leads to poor healing leads to injuries that don't heal leads to more disability.
Advice, keep on top of you nutrition needs and if you can't sleep properly, for goodness sakes, spend time in meditation!! It is good rest for the body. If you don't know how, there is youtube etc.
My advice is to get out of the house every day even if it is to shuffle down to the post-box to post an imaginary letter? The less you do, the less you want to do. The more you exercise, gently sensibly, the more energy and motivation you will have to want to do more.
Keep as fit as you can and don't sit in any position for too long before getting up and, making tea, dusting something, anything to keep the body moving?
If you have muscle pains, go look up experts like the wonderful Bob and Brad (youtube) other experts and channels are available? to see if a few exercises might be the charm. Sometimes it is like magic!
Find things you like to do. Wiggling to music, singing when folks are out, getting your paints and pencils out, see what happens? write your feelings, or stories, Get a journal and doodle you feelings and experiences? Be creative.
I wonder if you could ask yourself, what you are anxious/fearful of? I found my anxiety was mostly, just feelings in my body? So annoying! but at least I can tell myself they are just sensations and nothing to get upset over? Oh and my other great skill is over thinking. I do like to chew on stuff. Best to keep busy and research interesting subjects and leave less time for obsessing over things I can't change.
If you have real worries like getting sicker or stuff like that, maybe see if you can see a counsellor? Maybe there are reasons that need airing and understanding? Frankly, I think what ever happens in life, we tend to just deal with it and all the worry turns out to have been pointless?
You may have triggers for you health concerns and it might help to talk them over with someone paid to understand?
I've been looked at and probed every-which way and it's been horrid and boring and painful and embarrassing and gotten us nowhere. I've taken meds that made me sicker. The fact is, we fibros hurt and probably, we need to get over it. Do your stretches, don't overdo on your good days, and don't think Fibro is the end. You just have to work around how you feel?
If you are getting depressed and anxious over your situation, it will exhaust you. As tough as it is, we each need to come to terms with what is on our plates and figure how to make the best. That's not about giving in or up, it's about saying, if this is it? It's gonna be OK and we can still be happy, creative, etc. Once you can accept and stop fighting and fretting, there is room for things to get better.
I have used the time when I cant do much, to (rather grudgingly, at first) meditate and find out who I am, inside. Find the bit that mostly we ignore or pretend isn't there? You could look into doing a bit of shadow work? I have also wallowed and can't recommend it. Unless you really want to feel $h1t?😚
You could even start talking to your higher self/ consciousness and ask why you are sick? What you need to do, to be well? What you are being slowed down for? Maybe, in your past, you have been too busy to think about why you are here? What you actually want to do with your life? Have you spent too long doing the stuff you have to do and not enough time following your heart and soul? If we are getting off track it does happen forces will stop us in hopes of getting back to where we are supposed to be? A bit too Woo, for you? Or not?
As hard as it sounds, the answer to fibro isn't a tablet or any other miracle cure, it's you doing the hard work and figuring how you got here, where you want to go and how you can get there. I don't mean going back to where you were, when you got poorly, I mean going forward to where you can be yourself and healthy as you can be? Maybe you have to accept, you will always be a bit Fibro? But you can be better than anxious, and hopeless.
Feel free to think I'm bonkers or too harsh. It's OK if this isn't for you. I just see you pickling and I hope maybe something I have to say might help you break out of that cycle.
They say healing is a journey and only you can find your way to do it.
You are right. The rheumatologist told me when he diagnosed me, whatever you do, don't stop doing things. Sitting and doing nothing, you will waste away and then you won't be able to do anything. So that's what I do. But I'm also aware of not overdoing it. It is a delicate balance act.
I was diagnosed bipolar at 17, so my mental health has been looked at for nearly 30 years. I am on medication for it and have been told I have to stay on it, as I have a chemical imbalance in my brain, but generally the meds keep me on the straight and narrow. I learnt meditation and cognitive behaviour at the clinic and again, you are spot on with how this helps.
Pickling 🤣 I love that phrase. I am! But sometimes it all gets a bit much and I lose it for a while. But then you lot pick me up and I get back up and get going and get on with it.
It's silly, as I know my triggers. It's really worth taking time with yourself to understand yourself and recognise what's happening and why. Just sometimes I get fed up of everything xx
I frequently dismiss other things as "Just another fibro thing" so I don't bother getting it looked at.
I went over a year with a torn rotator cuff muscle, thinking it was fibro pain, until I casually mentioned the shoulder pain to my GP and a few weeks of physio sorted it.
Also, if you've got chest pains, go to A&E rather than pass it off as fibro because a great big zipper scar down your chest is not a good look.
Oh my that's terrible. But I understand how it happens. I was gradually getting more and more tired over a period of 8 months until I got so fatigued I phoned the doctor. I was severely anaemic and they are still looking for the cause. I went today as I have agonising stomach pain at the top just under my ribs and the doc said my symptoms sound like pancreatitis and added a inflammatory marker test to my blood tests checking my FBC.
You never know what to do for the best. I feel like a hypercondriact on the one hand and paranoid I've got cancer or ms on the other.
The doctor didn't help today. In one breath, this was really serious and needed checking, especially as I have pre-cancerous polyps removed from my bowel every 5 years and something is making me severely anaemic, to you have probably just strained yourself. Have a blood test and scan, but it should settle. Should I be worried or not 🤷🏻♀️.
3 months ago I went because I had stomach pain and was being sick after eating. Now the pain is constant and the doctor is sending me for exactly the same scan that found nothing 3 months ago. Seems pointless
Hi Jackson, I totally empathise with you on this. I’m always worried that I’ll miss something more sinister while just assuming it’s all down to the fibro. It’s difficult to work out sometimes. Hope you feel better knowing you’re not alone with these thoughts
I agree with not knowing whether to ignore it as another Fibro symptom or something to discuss with a doctor. I have Hypothyroidism thus making severe fatigue have an extra component of confusion.
My list of conditions is long. Most are comorbid to Fibromyalgia. I'm 63 and yes, this disease has progressed. I don't care what anyone says otherwise.
I started with allergies, IBS, and migraines in my teens. Reynaud's Disease appeared by the time I was 20 (genetic). I was diagnosed with PCOS, Endometriosis, and PMDD in my 30s. It continued on into Fibromyalgia, being diagnosed with EDS (which I've had all my life and is genetic) and other conditions. It's like a domino, one falls and they keep falling.
I started shaking about 9 mos ago. I told my PCP about it, who noted it down and said if it keeps occurring that she'd regret me on to a Neurologist. I still needed to find one for my Migraines and EDS. I started PT and after a set of leg exercises (not on machines), my leg started shaking (this isn't slight shaking but not violent either). Is already had several instances of it occur while standing but laying down doing isolated leg exercises made it more pronounced. PT said to talk with a Neurologist. I had finally found one and the appointment is later this month.
The big question is whether it's another Fibromyalgia symptom or something else. I've gotten very weak with all the flares. I can't walk much inside an RV. Outside is crushed concrete that hurts my feet.
MS has been on the possibility list for 10 years. I don't really think it is MS. It's something neurologically, I just don't know what.
I’ve read all through this post and I definitely agree it does progress. I was diagnosed about 16 years ago after many trips to the doctors. I also have cfs and restless legs syndrome plus the many other usual symptoms . What gets me the most is the lack of sleep, I average about 4 hours a night and chronic back ache. Like you cancer run through both sides of my family and I’m also convinced that’s what will finish me off. I’ve already had cancerous cells removed from my cervix but all clear at last smear test. I also worry that I will have a heart attack and won’t be able to get an ambulance quick enough due to the failing NHS. I know I’m being irrational but I can’t help the feelings.
I take my hat off to those who can push through the pain, wish I could do it. Also I used to enjoy driving but don’t go far now as I don’t feel confident enough due to my lack of sleep. I should look into meditation, I brought a hot tub last year and must say that helps my back no end and helps me relax.
I’ve been a member of this forum since diagnoses but don’t post much. It’s odd as a lot of the old members who frequently posted seemed to have disappeared. I should really make a point of being more proactive and posting more. I rarely see anyone now apart from my husband and it would be lovely to maybe spark up some friendships.
Wow! No wonder you feel so ill Jacksono. You have a lot on your plate. I'm glad that your doctor was so understanding with you.
I can relate somewhat. I have a sister with M.S. The 1st symptom I had was that I got pins and needles in my legs for a few weeks. I was walking around York with my husband one day when I found myself suddenly struggling to move my feet and legs. It felt like trying to walk when you're stuck in quicksand or concrete. My walking slowed down and I became exhausted. Until I couldn't walk at all.
There was a cafe just in front of us and with husband's help I pulled myself up the steps by the 2 grab rails which were thankfully there. I rested until I was able to move. My husband went to get the car and picked me up. I was terrified. My doctor suspected I also had M.S and referred me to Neurology. Fortunately for me it wasn't M.S and I was diagnosed with Chronic Fatigue, followed not long after by Fibromyalgia.
For a long time I was scared to go out by myself. But I have never been that bad again. I am so grateful. I am grateful too that you don't have M.S., it is a terrible, progressive neurological illness that I wouldn't wish on anyone.
I hope your doctor has managed to reassure you? If not, you can always go back and talk to him again. He may refer you to neurology for the sake of overcoming your fears. Bear in mind that it is a really long wait to see a Neurologist. My doctor has referred me again because of neurological symptoms and it is a 2 1/2 year wait.
Fortunately, my doctor thinks my symptoms are caused by Functional Neurological Disorder and not anything serious. FND has some overlap of symptoms with Fibromyalgia but it also has neurological symptoms. Take care and God bless, I will keep you in my prayers Jacksono xx 🤗
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