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Your experiences with Fibromyalgia

(28 Posts)
Scentia Wed 26-Feb-20 20:51:36

I have recently been diagnosed with Fibromyalgia and I was wondering if any others have it and what their life is like.
I have largely ignored my symptoms of pain for a while and it was only after my eyesight was compromised that I got looked at. I have had lots of tests over the past 6 weeks and this is the outcome.
I was under the impression (wrongly) that it was a psychosomatic condition and wasn’t a ‘real’ illness. I am therefore struggling to deal with this diagnosis and really would like to know what it is like, king term to live with it.

Myself, I have constant pain in many of my joints and over the last 2 years I have gone from running and walking ultra trail runs to struggling to walk 3 miles. I stumble and fall over, a lot and have days of dizziness that makes me feel drunk and nauseous. I feel really tired sometimes but still can’t get a good nights sleep. I am really feeling sorry for myself as my favourite thing in the world is to walk the hills and mountains and I can’t do that anymore. I am having to try out new ways to stay active and keep myself fit (or as fit as possible!)
What do others do to stay active.
Is there a list of self help things I can do to help myself. I would like any tips in natural ways of pain relief.
Will I deteriorate or can I get better? I will be seeing my GP tomorrow but I don’t know if he will have any answers for me.

Scentia Wed 26-Feb-20 20:53:07

*not sure where the ‘king term’ phrase came from!

Marydoll Wed 26-Feb-20 21:02:07

Scentia, glad to see you took the plunge and posted. Good luck!

Oopsminty Wed 26-Feb-20 21:06:18

Hi Scentia! I was diagnosed with fibromylagia about 4 years ago. I went through so many different emotions. Questioning if the diagnosis is correct ... ( I still do this) ... wondering why I have this. Is it to do with the under active thyroid?

How can they be so sure it's fibro? It's just elimination of other possible illnesses ... no test exists for fibromyalgia as yet.

People have it in varying degrees. Some people have good days and bad days. Flare ups. I"m pretty much the same every day.

I had to take early retirement and can't cycle like I used to

I still manage a 3 mile stroll with the dog on a daily basis. A slow 3 mile stroll!

Hot baths help. Hot baths with Epsom Salts help more. I find acupuncture helps but it doesn't suit everyone.

Trying to do as much as you can but don't push yourself too hard

As for insomnia. Ugh. It's such a trial.

I start counting down from 1000.

Tends to work for me!

Sorry I'm not much help but what works for one won't necessarily work for another

Good luck!

Oh and feel free to PM me if need be ;-)

Granulation Wed 26-Feb-20 21:06:48

Just replied to your previous message on “Health” forum. Will come back to you tomorrow with more detail here (or on private message). But can’t now, have reached today’s energy limit, sorry. But promise I won’t forget. Xx

ElaineI Wed 26-Feb-20 23:17:08

Hi Scentia - read the other thread too. I was under the impression that fibromyalgia was a physical illness and showed up with a raised ESR in blood tests and was primarily treated with steroids in a reducing dose as per blood tests. Husband's great aunt had it and never completely got off steroids. My Mum has polymyalgia which is similar but not exactly the same and again treated with steroids and painkillers. I think neither go away completely once you have them but can be controlled by medication and life style changes including rest. Her worst symptom was pain in her arm and shoulder and her ESR blood test was very high. Now she is pain free and ESR is normal but will be monitored every few months.

paddyanne Wed 26-Feb-20 23:28:58

My daughter has it ,she has never been given steroids for it,She has various pain relief ,even morphine at home when it a bad spell .She has the complication of Hyper joint mobilty syndrome and combined it means most of her life is spent inbed.Sorry if thats hard to hear ,its hard to live with too,She's just 41 with 3 kids .She had limited success with acupuncture , a product called Acti Patch thats similar to a tens m/c but worn 24/7 and CBD oil .She lives in hope of cannabis being legalised for pain relief as a friend in the USA gets it and it helps a lot.The main issue we have is that every thing that does help tends to have a short lifespan,usually 4 -6 months ,then we have to hunt for something else.See if you can get a referral to a pain clinic they will give you advice.
Not everyone has the same symptoms so dont imagine you'll be the same as she is ,we have a family friend who has amuch milder form and still works 2 jobs and runs a home .Good luck with this its certainly a difficult thing to manage and I hope you get all the help available to you
Check out FB for Fibro sites which can be a huge support

pinkquartz Wed 26-Feb-20 23:29:46

Fibro is very much a physical illness with lots of muscle pain, sleeping difficulty, foggy brain and other symptoms.
I notice though that you say you have painful joints and that is not classic Fibro.

I had to have my hair cut as I could not bear the weight of it.
On bad days I cannot be touched at all. It hurts too much.

The falling over is classic though and it is important to stop overdoing things. I find overtiredness will stop sleep happening.

In my case Fibro is only one of the health issues I battle with and I know that the pain and lack of sleep is the worst.

do your muscles hurt?
Are you sensitive to lights?
to noise?
Maybe you have to check with the Doctor that this is not a label just given because they cannot find what is really wrong.

Fibro brain is difficulty in concentrating and working out new information.

You can pm me if you want to ask anything else. I was diagnosed about 16 years ago......but I had the symptoms for 10 years before that...The doctors didn't know about Fibro then and used to tell me it was my joints that hurt!

These days it is both!

pinkquartz Wed 26-Feb-20 23:32:12

I have friends in North America who manage their symptoms very well with medical Cannabis. Unfortunately we are not allowed it even though we grow it and export it.

I have Tramadol

Granulation Thu 27-Feb-20 07:42:42

Morning Scentia. Sorry it’s a very long post!
I’m outlining my symptoms to help, rather than moan. Fibro can seem to include pretty much anything, but everything isn’t necessarily fibro.
My symptoms are: widespread pain, head to foot, can strike anywhere, joints (yes for me), muscles (aches, cramping and spasms), neck and back. Sometimes sharp, burning stabbing pains like red hot needles that take my breath away (especially if in my eyes), sometimes like being struck by lightening, sometimes like a dislocated joint and can’t move e.g. arm at all. Sometimes like I’ve been burned or bruised when I haven’t. Sometimes just annoying background pain. Hypersensitivity to touch causing pain from even clothes or bedding touching skin, also sensitivity to light, sound and smell, any of which can cause pain or distress which others simply cannot understand.
Headaches, chronic headaches, migraines, chronic migraines, ‘brain fog’ (inability to concentrate, focus, remember, confusion etc.), dizziness and balance problems. I could trip over a shadow.
Tinnitus, constant. I think that would be the first symptom I’d fix if I could, because its always there, like my brain is screaming.
Vision problems (double vision, blurring, inability to focus eyes, bouncing vision which causes nausea and extreme dizziness).
Insomnia, disrupted sleep. Fatigue. Restless leg syndrome (RLS), also involving my arms. IBS. And I’ve probably forgotten some.

Sounds hideous when you put it all together. Fortunately I don’t often get all of that at the same time. It’s a very up and down syndrome which can be affected by stress and trauma (of any kind, physical, emotional), it can also be affected by the weather, or what I do, such as overdoing things on a good day.

Initially after diagnosis I was prescribed amitriptyline but that made my RLS significantly worse. Now I manage my headaches, migraines and insomnia with gabapentin and it really helps. I’m not sure how much it helps with the widespread pain, but think it does a bit. I keep active, I exercise every day. I do some stretching and I walk for at least an hour (I have a dog) as briskly as I can, that varies day to day, some days it feels like my legs are made of concrete but I force myself (actually, the dog does that!). I did try Tai Chi as recommended by consultant, but found my coordination (or lack of) just couldn’t cope with it. I also do all household chores and gardening myself. I keep busy and occupied, I do ‘brain training’ activities too, to try to keep my brain active now I am retired.

I find it helps not to dwell on symptoms (in spite of the above!) to accept it, it is what it is. At least now, after decades of answering people who asked what was wrong by saying “Apparently nothing.”, now I can say “It’s just a fibro thing, it’ll pass.” and that does help. Explain to family and friends what it involves for you. Tell them what you find difficult or can’t do. Be kind to yourself, rest when you need to, but stay as active and positive as you can.
There are obviously more people on GN with it, we’re all happy to listen and talk about it with others who understand (or don’t!).
Hope your appointment goes ok. Take a list of symptoms and questions. Ask if there is a consultant locally with an interest in it (could be rheumatologist, mine was) if the GP is not familiar with treatment options.
Good luck.

Marydoll Thu 27-Feb-20 08:18:40

Great post Granulation!

As you have said everyone is different and treatment which suits one person doesn't always work for another. Patience is indeed a virtue and difficult when you are unwell.
I don't have Fibro, but do have a number of autoimmune diseases, which sadly resulted in me having to give up my teaching job. Many of the symptoms are very similar.

The best advice is I can give is try not to dwell on it, because it will drag you down. That's difficult to do when you are suffering chronic pain. I went through every painkiller under the sun to no avail, until I was referred to the pain clinic and prescribed a Fentanyl patch.

Scentia, join a support group, where you can offload to fellow sufferers and ask questions, no matter how silly you think they are. I kept everything to myself, so as not to upset my family and it had a detrimental effect on my emotional wellbeing. I became very angry at the world.
If you are unwell, tell someone. I got a (gentle) rollicking from my heart consultant recently for always saying I was "fine".
It's only now after forty years of chronic illness that I'm telling people I'm unwell and unable to do tasks. It was like a huge burden being lifted. I look so well, so I was being asked to do things and people were miffed when I said I couldn't. I decided to come clean.
Attending my fatigue management group also allowed to find supportive strategies, come to terms with things and find a level of acceptence.

It's difficult to have a positive attitude, but negative thoughts impact on your health. Recently I was asked by my occupational and physio therapists to come to a rheumatoid arthritis support group of people who had given up, to talk about how a diagnosis doesn't mean the end of the life as you know it. It will certainly be different, but not over.

I wish you all the best, there will be many on here who know exactly what you are going through. Accept their help and support.

Scentia Thu 27-Feb-20 08:34:10

Oh thanks so much everyone for your replies.
Granulation. I am pretty much like you I think apart from I never get headaches and all the professionals I have seen keep saying ‘ you don’t get headaches?!’ But I have a GP appointment at 2.30 today, they booked me a double😂 so I will be full of questions for him. Thanks again all of you.xx

Scentia Thu 27-Feb-20 09:27:07

I have my list for the doctor this afternoon. He will regret offering me that double appointment😂

Shropshirelass Thu 27-Feb-20 09:36:36

Scentia. I follow the Ketogenic way of eating. If you research this you will see that it has many health benefits, your body enters a state of Ketosis (not to be confused with Ketoacidosis!). It reverses diabetes and reduces the effects of Fibromyalgia. Reduces inflammation. It has too many health benefits to list here. Please look into it as it could improve your quality of life. I feel so much better eating this way. There is a very good FB page called Keto Community UK also look at Diet Doctor. Good luck.

MysticalUnicorn Thu 27-Feb-20 14:55:40

Hi, I'm sorry to hear you have fibro. I've had it for over 25 years, and it has totally changed my life, and not for the better. It is a definite illness, not psychosomatic, even though many doctors try to tell you it is. Hopefully your dr will be sympathetic and proactive for you. I've tried all the medicines there are but because I am now hypersensitive to everything as part of fibro, I can't take any meds at all, so I see a homeopath for mine which definitely helps. Your foot pain is likely to be plantar fasciitis, which I also have, along with RLS, insomnia, fatigue, dizziness, tinnitus, blurred vision, pain, confusion (fibro fog), poor memory, to name but a few symptoms. I've tried chiropractic, acupuncture and have also changed my diet so that it's almost vegan now, although I do eat fish and chicken. It's mainly red meats I've cut out and that helps. There are lots of books out there, loads of facebook pages and groups, a fibromyalgia society, various food supplements, and basically as there is no formal treatment for it, it's down to the individual to try and find what is best for them. I'm so sorry that I can't give one definitive answer to you, but if you think I can help (and I've tried everything) then please get in touch with me and I'll happily help you through this confusing and worrying first period after diagnosis. Sending love and gentle hugs in case you find being touched a challenge too! xx

Scentia Thu 27-Feb-20 16:06:55

Well, I saw my GP and he was lovely. He read all my issues and all the correspondence from the neurologist and then said I can either accept the diagnosis and get on with it or not, but as I have only 1 kidney I cannot have any pain medication unfortunately. He asked if I wanted to be referred for CBT and I said not at the moment. He said I may like to try some homeopathic treatments and I said I will look into that. I feel very positive after talking to him as he knows me well and he knows what works for me. He said that my pain in the heel is part of the symptoms and I won’t be damaging it to walk on it so it is up to me. He said I should just do stuff when I can and rest when I need to. I did ask if I lost this stone I have gained this year would it help and he said it would, so that is my mission!

Granulation Thu 27-Feb-20 18:52:04

Oh good, I am so glad that he was lovely and left you feeling positive. He sounds both sympathetic and helpful. That’s great, and means whenever you are worried about some new symptom (which may well happen) you will feel able to go and talk to him. Do some reading to help you understand your ‘new normal’, and do keep in touch on GN, we will all help and support in whatever way we can.
Take care. 💐

Envious Thu 27-Feb-20 19:39:25

I have had fibromyalgia a long time. Last summer I was diagnosed with hyperparathyroidism having had high blood calcium for years. Ask your doc what your levels are. Seems they often go hand in had. Elevated calcium,elevated PTH and low vit. d.

GrannyLaine Thu 27-Feb-20 19:44:28

ElaineI though they sound similar, I don't think there is any connection between Polymyalgia Rheumatica which has quite defined symptoms and treatment with steroids, and Fibromyalgia which is altogether a much more complex thing.

Corryanna Sun 21-Jun-20 20:06:44

I'm sitting here in tears as I've been blaming my sore lower back on my degenerative disc disease problem (had this for 9 years) for my symptoms but today I could barely walk for 1/2 mile as my thighs and calves were burning - I convinced myself I was too fat (gained about 3kg in Lockdown). I've had blurry vision for the last 2 hours or so (first happened a year ago and I was blaming dehydration). I have trigeminal neuralgia which has flared up on both sides of my face now, I'm constantly tired but was thinking I was lazy, my favourite place is in bed where I am comfortable but I feel very tired when I wake up and feel constantly depressed. I feel a fraud if I go to the GP as there are people worse off than I am. I don't know what to do for the best - any suggestions?

paddyanne Sun 21-Jun-20 20:26:06

Corryanna can you get a GP appointment where you are? Even a phone appointment as a pre appointment so you can get some answers from the doctor.There are ads on TV and Radio here telling us the NHS is OPEN and not to suffer things that can be helpd.Call in the morning and you might get help quite quickly

Corryanna Sun 21-Jun-20 20:47:36

Thanks paddyanne. I think it's a case of "stop feeling sorry for yourself!" as my father used to say if I felt ill at all. I can hear him say "Pull yourself together and snap out of it" What damage parents can do.

Corryanna Sun 21-Jun-20 20:58:08

I have read the posts on this page more carefully - are people understanding of fibromyalgia? I don't mean giving pity, I mean a bit of consideration. I worked with a lovely lady who was a fabulous teacher who was active and full of life. I never would have guessed she had fibro until I hadn't seen her for 3 months and she said she had been diagnosed with fibro and I couldn't believe she had changed so much - looking back, it was a lack of knowledge and caring on my part and I feel ashamed.

annep1 Sun 21-Jun-20 21:57:23

I can't post much at the minute, I have not even dressed today, feeling exhausted with pain. I just wanted to say, I was diagnosed with fibro and then M.E. (now called chronic fatigue symptom CFS for some reason). They have many symptoms in common. And many of the symptoms people describe here are associated with M.E.
Are people understanding of either? In general sadly, no. If you have an understanding doctor you are very lucky.

It's very difficult to live with an undiagnosable (if that's a word) illness that is invisible. But you have to stay optimistic and make the most of good days.
Hopefully I can get back to the thread tomorrow.

OceanMama Sun 21-Jun-20 23:33:50

My understanding is that fibromyalgia is related in some way to rheumatoid arthritis. A family member of mine always saw a rheumatologist about theirs.
I believe I have fibromyalgia but have not bothered having it formally diagnosed. That's not to say I haven't had check ups and tests to rule out serious things. I get by with a short nap in the mid-afternoon when needed. 10-15 minutes recharges me for the rest of the day. I take supplements that can help. I see a chiropractor every month and get massage therapy when needed. Occasionally I take OTC painkillers but I try not to and have to be careful about those.
This is my normal though not so normal really, is it? I don't think doctors can do anything for me, so I just get on with it as best I can, doing what I need to do to manage my own body. I don't think most people would be aware of any of this day to day as I've got good at managing. Some days are better than others and I do go through periods where I feel quite good and others where I feel particularly bad.