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Fibromyalgia Action UK
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Is fibro progressive?

Most information sites say fibro isn't progressive. Maybe it's not but, I'll be one to argue that it does. If fibro doesn't progress then why after over 20 yrs am I having to give up my job that I've been at for 9 yrs? The first yr during diagnoses my brain was mush I had to set alarms to remind to pick my daughter up from preschool, or forget which lane to turn in to when driving, I couldn't stay awake for more then 30 minutes before I would literally fall asleep no matter what I was doing. And let's not forget about the horrific pain and tremors. When I look back idk how I survived. Those symptoms did get better after a year, then it wasn't so bad, I still suffered everyday as we all do but I could still manage to hold a job, keep the house clean and live a semi normal life for about 5 years then life got a little harder, more pain, the development of ibs and other annoying conditions that my dr said was because of the fibro and that's it he didn't treat it out say anything else about any new condition I developed. My depression got worse and I had to be admitted to a mental rehab, but I was out in 4 days (that's another story for another time) fast forward a was to now. Now I can barley get out of bed everyday, I had to cut my hours at work and step down from my management position and putting my family in hard times with the money I lost stepping down. The anxiety is horrible I can't even make our answer phone calls let alone deal with people face to face. Taking a shower is one of the biggest obstacles I have to get threw, and some days I have to settle for body wipes and dry shampoo. My body is worn out just walking from one room to another to the point I have to stop and sit and catch my breath. The meds don't do anything anymore and my dr won't adjust them, so I have turned to natural medication the c.b.d oils are really good but be careful and read about the company and or the reviews there are a lot of people taking advantage of peoples disabilities and know how desperate they are for relief. I know a few really good places to get the oils if anyone is interested just leave me a message. My point is even though it was horrible in the beginning it was better then it is now. Maybe our bodies just get weaker as we get older and it bodies are telling us we've done everything we can now it's time to rest.

Gentle hugs fibro warriors.

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Hi Fellow Warrior.What are we going to do about this? I feel like you do all the time and have just spent the last 4 days in bed. I'm upset, frustrated, pain well, exhausted and feeling unwell. How much more can our bodies take? Because no one is listening to us. Or helping us. It feels like a slow and painful death. I don't want to still like this when I'm 70. Because I'll be in a nursing home.

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I know this horrible I'm still trying to get in the shower and I started at 8 this morning and it's 11:30 now. I also have been in bed for 3 days now, I had to give my hours away at work because I'm sick, and can't afford to be doing that I only get about 25 hours a week now verses the 48 hours I use to work, not to mention the 3 dollar pay drop. The nausea is new this year and I hate it so much! If I stand for to long or just breath I get sick to my stomach. And heat is a bug problem this year too, I have always been sensitive to cold, cold make my bones hurts and shivering is unbearable. But now the heat is just as bad maybe worse because the heat makes me feel like I'm going to throw up and pass out! And it's so hard to get my body to cool down, and not to mention, new this year too night sweats! I wake up drinched in sweat and when I go to get up and change my night gown, the air hits me and causes me to shiver, then I'm wet and cold and in serious pain all over from the shivering. I wasn't ready tCmy position up at work but, I had no choice I'm only 40 so I'm really afraid of what the years are going to do with my body. I worry my husband will get fed up, he won't leave me we've been together since I was 14 and he was 17, but this year has really stressed is both out. My daughter is 18 now so she most of the time, I feel really alone.

Sounds like we probably have a lot in common. 😃 although that may not be a good thing lol. Hope you get to feeling better soon! Soft Hugs xxx

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Hi Hidden Welcome to our wonderful forum, I'm sure you will love it and find it invaluable chatting to others who are going through the same as you, at different stages of their lives with fibromyalgia.

You really have come to the right place my friend and I look forward to chatting with you on the forum.

Please do go check out the mother site fmauk.org where you will find lots of useful information and links on fibro and I look forward to chatting with you on the forum

I have copied Angela Wise's experience with fibro as I thought you would find it interesting.

Peace, luv n light

Jan xx

It's a good idea to lock your posts to the community, so it's not open to the internet. If you look to right of screen you will see under "Pinned Posts" a link to simple instructions on how to lock it.

Stage 1

You started experiencing pain and fatigue more than before, you’re not sure what is going on but you hurt and you are tired. You can hold a job, you can make it through your day, but you know something isn’t right... so it’s something you’re going to start researching.

Stage 2

You are in pain a lot, sometimes taking an anti-inflammatory drug or what have you. You do not get much relief, and you have accepted the fact this is something you are going to have for a while. you feel a lot of pain and you are exhausted almost every day, but for the most part you keep going and hold down a job, can still go to events, spend time with your friends and loved ones, and have some good time here and there.

Stage 3

You are in constant pain, you are constantly tired, you wonder whether you will be ever able to function normally again. You are considering not working, because you no longer have the energy you once had, you come home from work and all you can do is rest. You have to turn down invitations, you have no energy left and you have to rest up just to go back tomorrow. In this stage you start to feel more alone, and more and more people are beginning to think you whine too much. This stage can last a long time, perhaps years.

Stage 4

You are in unrelenting pain all the time, good days are few and far between. You are calling into work sick more than you even make it in. You are in bed a good portion of your day. When you do have a good day you take advantage of it, and do as much as you can, all the things you have left in the past weeks you cram into your day, knowing well that tomorrow you will be paying for it. Your flares last for days. By this time your friends make plans without you, they already know your excuses and are nearly certain you will not be able to join in. Your family begins to think you are using fibromyalgia as an excuse to not do things, because stages 1-3 you were able to do much of what you just can’t do now. They think you are using your illness as an excuse, you feel alone, isolated, worried, emotional, sad. This stage can last years.

Stage 5

You have already been let go or have quit your job, you are asking questions about permanent disability and how long it takes to get it. You have heard horror stories about people being denied and the process taking years. You are struggling to make ends meet. Maybe have a person who takes care of you. You spend a lot of your day in bed, although you still take advantage of that one good day once in awhile. You are sore, very sore, you cry a lot, you feel like a prisoner in your own body. By this time you have already explained to your friends that it still feels good to be invited even if you don’t go. You have found that the only people that can relate to you are in a similar predicament. You wish your friends and family could understand.

Stage 6 (The Final Stage)

You may or may not still be waiting for disability pension. You cannot hold down a job. Fibromyalgia is now your lifestyle, most of your friends are living with fibromyalgia themselves, everything you do takes all your precious energy, simple daily tasks you took for granted in earlier stages, going to the bathroom, washing your hair, taking a shower, getting dressed, tying your shoes, take all you can give. You get irritated by your hair or clothes touching your skin, you have no energy or desire to put on “your face” before going out, no energy to keep a neat home. With all the medication you are on now or have tried, you are dealing with side effects and constant pain.

You are a human and still enjoy some things, like watching TV. You try to stay current on any news regarding fibromyalgia, in hopes they are closer to finding a cure. Most of your old friends are not around anymore, they have things to do. You need to rest a lot. It’s easy to feel overwhelmed in this stage, because things are piling up around you: bills, laundry, dishes. You do a little everyday, you push yourself so you don’t feel like your day was wasted in bed, you feel guilty that you no longer pull your own weight in the house. Your kids, spouse or family do things for you more than ever. They try to do it in a nice manner but you still feel like a burden, you can’t remember anything, cannot recall names or dates and you lose your train of thought mid-sentence. Also you know more about fibromyalgia in this stage then your own doctor and basically laugh when trying a new medication. You are without hope, same drill as before, same results, nothing helps much.

The original post that inspired this page was written by Angela Wise and posted on her page in 2014.

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I've got to say that's a very depressing post indeed by Angela Wise it doesn't give us much hope for the future 😟

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I'm sorry Mydexter it wasn't meant to depress you. Every one is different and this is obviously one person's experience with fibro that most of us can associate with, it was more to relay the fact that the progression comes over a long time for some people.

There is always hope my friend, they are researching all over the world. even as far and wide as Isreal & Canada, they have found hyperbaric oxygen therapy is helping to treat fibro and I don't think it will be long now before things change.

Never give up hope ❤

Luv Jan xx

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Never 👍😃

Live the day.

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Oh dear I think I'm at Stage 6. That's all the energy I have to write with.

Hugs to all especially Fibroh8sme SallyB xx

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I definitely agree that fybro gets worse, I can't do half the things that I used to do just last year, and it's so depressing that we can't do anything about it only learn to live with it each day as they keep telling us there's no cure, I think though that we must be very strong people to go through all we do without giving in which we feel like doing many times I'm sure, but we keep on going , as they say what doesn't kill us makes us stronger, but it's so hard isn't it , hope you feel a little better soon take care

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Hi there

I have lived with Fibro & ME for 36 years. I managed to work, have a family and look after my home for many years.

I then suffered several severe traumas in a row and ended up having to give up my job and my life in general.

I used to be able to go through my whole house from top to bottom changing beds, washing, cleaning and ironing all in one day. It would now take me over a week to do all of that.

My personal opinion is that Fibro is not progressive. However I do strongly believe that stress and trauma do play a huge part in how much we suffer with our symptoms.

After the trauma I went through my symptoms have gone into orbit and never returned to pre trauma.

Anyway, those are just my thoughts.

Lu xx

PS Many apologies - A very warm welcome to our lovely forum :)

I have been on the forum for 5 years and have come to think of it as my online family.

Hopefully you wont feel quite so alone now.

Lu xx

Administrator

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Hi Hidden welcome to our lovely forum I'm so sorry you are going through all this sounds like you have had a very difficult time.

It is never easy accepting illnesses of any sort but I am proud of you joining the forum and sharing your experiences it takes a very strong person to keep going through all the turmoil.

Anxiety can often make hard times much more difficult to go through I do hope things start to pick up for you.

Support on the forum as you can see comes from members and admin alike and I wish you a good journey. We are here any time if you need to chat your symptoms can at times become unbearable so do keep us up to date especially on lovely pain free days you manage to get.

sending massive hugs and a very big welcome

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Hi will you private message me so I can get some oil thanks xxx

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Edited By Admin is a good place it carries different brands but they are top line brands. And offer everything you need to get started. I get my muscle rub from Edited By Admin everything I've got from them works great! Koy c.b.d vape oil is really good as well they sell joy on the first site I gave you. I found those threw other forms and by Amazon. If you look on Amazon and see one ur interested in go to the manufactures web site and read how they farm their oils and all cbd and essential oils should stored in a dark glass container. Miracle essential oils is a good place for oils that are not cbd oils. This stuff is a little expensive so don't get suckered in to buying cheap and thinking it will work the same, I've tried. A couple of other things I've been using has helped with every levels and moods, they are authentic Shilajit this stuff is very potent, you only need to take a pea size amount and desolve it in tea or any hot beverage 1-2 times a day, it is also a good detox. The other one is called Ashwagandha this helps with stress, anxiety and moods. Also increases energy levels.

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Thanks so much Xxxx sending hugs xxxx

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Hi Hidden

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

A you say, the official stance is that Fibro is not progressive. However, over time I am sure that as a result of Fibro and not being able to do the things that we once did that we suffer muscles wastage and a fall in our over all fitness? This in itself could easily lead us to believe that Fibro is progressive by the general feeling of being unwell?

.

I would also like to gently point out to members that some medications can / do interact with CBD, and I have pasted a list form the *CBD Review website:

*Drugs that Interact with Cannabidiol

Any drug metabolized by cytochrome P-450 enzymes could potentially interact with cannabidiol. According to the Indiana University Department of Medicine, drugs known to use the cytochrome P-450 system include:

Steroids

HMG CoA reductase inhibitors

Calcium channel blockers

Antihistamines

Prokinetics

HIV antivirals

Immune modulators

Benzodiazepines

Anti-arrythmics

Antibiotics

Anesthetics

Anti-psychotics

Anti-depressants

Anti-epileptics

Beta blockers

PPIs

NSAIDs

Angiotension II blockers

Oral hypoglycemic agents

Sulfonylureas

.

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

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My GP told me that it would not get any worse and it has, and appears to still be getting worse, I too can now do far less than I could before, I have some days when I can only do about 20mins of 'normal' activity, before being completely washed out for the rest of the day. when I was first diagnosed I was working full time, running a house on my own, maintaining a 2 gardens, and now virtually nothing. So, I would say Yes it can get worse.

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