Told 2 years ago i think u got fibromyalgia.

[Fg08hvt64tg]

Ive been totally fatigued for last 6years pains all over my body. Some days its in my shoulders n neck. Been told it was arthritis in my neck which affects my shoulders and back. Then another day ive pains and weakness in my arms numbness in my fingers been told i got tennis elbow carpal tunnel. Its been pain in my lower back my knees. I been told ive a prolapse disc . Arthritis in my knee. This is way its been for years. Im constantly tired and fatigued ive been told you got depression n anxiety. I feel like a hypo condtiac. I cant get back to work cause im shattered all the time. Now my marriage has ended after 43years its been an ongoing nightmare. If anyone can relate to this story please write back. Im going to see a rhumatologist in 2 wks but my memory is so bad i forget what to tell him. HELP.

[CheetieCat]

Hi, first of all I'm sorry you're feeling so bad and the not knowing what's going on must be one of the worst feelings there is. We've probably all been made to feel like hypochondriacs at some point, I know I definitely have.

Try to make a note of timings, like rough dates of when your symptoms began. Any medications you were on and are on now and any tests you had like bloods x-rays scans etc. Put it in order from the very beginning until now.

Try to keep it factual and to the point to give them a good overall picture of how your symptoms are affecting you. The more information you can give them the better and take your notes with you to keep you on track.

You can also have someone in with you if you feel that would be helpful. Hope your appointment goes well for you!

[Fg08hvt64tg in reply to CheetieCat]

Thank you.

[onebigvoice in reply to CheetieCat]

Agree with Cheetie Cat, I was diagnosed about 10 years ago, and to make matters worse we all had the pandemic in between. because we have been out of that for some time does not mean that the symptoms went. Verry much the opposite, help if you were getting any before was restricted to ZERO and to be quite honest as I support the NHS 100% its not them that are the problem. Start making a little daily diary, if you have a note page or leave the two front pages clear, and in those write, when you think of them questions you want or need to ask.

Things like are there any foods I need to avoid? to help the "Mend"

Would eating certain foods help?

Do I need an operation? Or can it be managed?

If I did need an operation is this a quick fix, and will it eventually come back?

That's for you to weigh up whether age, being out of "commission" who will look after you, what is the expected recovery period, what if things go wrong?

I know this is long but you are out there to fix you and have the best life you can, if you want help you need to ask, so keep the diary until the appointment, which also is a good way of keeping appointments as I know where I am for the next month or 2 for appointments even the six monthly ones.

Let us konw how you get on before and after what was said, no need for much detail, things like I am now having physio, after a SCAN they say an Opp is needed and they are looking to get me in soon.

Hope all goes well.

[Fg08hvt64tg in reply to CheetieCat]

Thanks. X

[Gigiruth]

Hi Fg08hv64tgSorry to hear things are so tough right now.

Yes I can relate.

It is exhausting to have no energy. Emotional events in life effect our health greatly too.

I made a health CV

Just one sheet of paper with concise list of main events in date order and gave at appointment.

Consultant said helpful and diagnosis of genetic condition as well as fibro..

There are many hints and tips from all on here about day to day self care.

Improving sleep has helped me.

I have found my body is much more sensitive to things than the standard model!

Take good care of yourself and rely on those you can trust.

Try and find things that give you joy and delight even on the worst days.

Nature helps me.

Look after you

Fibro hug

Gigi

[Fg08hvt64tg in reply to Gigiruth]

Thank you.

[CheetieCat in reply to Gigiruth]

A health CV, great idea Gigiruth! Consider it stolen 😁

[Leemccluskey]

Depression and anxiety will go hand in hand with fibromyalgia. I know its very hard to do but please try and find something enjoyable and relaxing to do or something exhausting to do that will make you feel that you have achieved something. Both exhausting and relaxing works because relaxing is relaxing and exhausting makes you relaxed as you become so tired out. Not that we are not already tired out with fibro.Years ago I had horrific ME but I accepted it because there was noting I could do about it. I forced myself out of bed in the morning did a few jobs and was back in bed by 11am then up at 2pm couple more chores then back in bed until 5pm then up and forced some more chores and then at 10pm would get another shower put some nice clothes on and go to nightclubs and bars every night until 2am. I wouldnt drink alcohol except maybe the odd one but mostly just soft drinks. I could then drive home. I used to watch other people drunk waiting for taxis and it used to make me feel I had no restrictions because I hadn't spent lots of money on booze and wouldnt feel sick from the booze and I didn't have to wait and pay for a taxi I could just drive home instantly and get into my bed having enjoyed the evening.

I found that actually doing something when you are awake thats enjoyable but tiring really helped take my mind off the ME and I would wake in the morning yes exhausted but thinking I had a good time last night, I cant remember feeling any pain or brain fog and it didn't cost me much.

My GP told me she had a few patients with ME and she asked them if she could mention them to me incase I knew them but also she asked if she could mention me to them.

My gp asked me how I managed my ME so well when all the others were in terrible states. One was in a wheelchair wearing sunglasses all day and all were depressed.

When I explained about doing things like nightclubs enjoying myself but also tiring myself out at the same time until 2am and saying I found it helped a lot she was surprised.

I suffered with ME for 14 years and I had had almost every symptom pain jelly legs forgetting my age brain fog tunnel vision heavy sweating exhaustion sleeping all the time. So many others that I forget. One day I had a GPS appointment and it wasn't until 30mins of driving I realised I was driving in the opposite direction to the doctors and didn't remember one single bit of the journey.

I only started going out to clubs every night in that 14th year and by my 15th year my ME was gone. Honestly my ME completely disappeared. I was playing tennis going on holiday and even started a new relationship and life was wonderful.

16 years later my relationship ended and I slipped into a bit of depression and it just stuck with me until 9 years later I had a heart attack and then along came fibromyalgia which I suppose was from the depression and the traumatic event of the heart attack.

Now another four years later having been depressed and suffering fibromyalgia I've had another heart attack and I am now in heart failure with a 50% survival rate in next 5 years so I'm even more depressed and worried that my mother will be burying me. My fibromyalgia is much worse and all since I found about the heart failure.

I am determined now to try and get out of this depression because its a fact that depression causes muscle aches pains and tiredness and I'm hoping by doing so the fibromyalgia will calm down.

They say you cant get rid of anxiety and depression and that if you accept it and realise it won't kill you that it will ease and maybe go away.

Sorry for the long post but I think if we all do things we enjoy and really push ourselves no matter how tiring while doing them that we can get rid of the anxiety and depression and maybe even take fibromyalgia into remission.

I am going to try it

[PrincessNoo]

Hi and I’m sorry to hear of the troubles your having.

I have a similar experience to you.

I was diagnosed in 2007 with fibromyalgia. I have seen 3 rheumatologist and a pain consultant who have all confirmed the fibromyalgia diagnosis.

On top of this I have osteoarthritis in my shoulders and lower back and a prolapsed disc in my neck.

Many of the symptoms overlap with fibromyalgia but for me the pain is very different.

The only way to confirm if your other symptoms are not connected to the fibromyalgia is to see the right consultant who will do the right tests.

I am currently seeing both a neurosurgeon and an orthopaedic surgeon.

The neurosurgeon whom I saw on Saturday did say some of my symptoms could be the fibromyalgia but he is doing an MRI to confirm this.

I have found that if you go to see which ever specialist it is and you have your previous notes and reports they are generally understanding and sympathetic.

Sometimes you have to be firm and strong. I’ve been told loosing weight will help (it didn’t) and we all know it’s the stock answer these days for whatever is wrong with you.

My own marriage ended in 2019 and I have to say I have found the fibromyalgia generally a lot better as the stress is no longer there.

Try and stay positive do your own research you can lead a fulfilling life with fibromyalgia, I would not have believed this in 2007.

Also one last note, has your vitamin D been checked x

[Vontrap]

Hi. Sorry to hear about your experience. I’ve been diagnosed a Fibro 6 yrs although believe I’ve had it for years. Yes Fibro suffered have all over body pain. Headaches depression etc. I have recently discovered I have osteo arthritis in many parts of the body. Fibro seems to heighten your pain and find your tossing and Turing during the night. My husband is very good with me. I’ve found recently that I’m anxious and getting annoyed at things constant headaches. I’m going to a memory clinic on Wednesday as my hubby says I have difficulty comprehending things and seem to be arguing or having disagreements more about things. I’ve been off my meds for about 3 mths now and don’t want to go back on them again. My doctor won’t send me to a rheumatologist ? I also have COPD not with smoking so I’m breathless now and energy levels and in the last year energy levels have dropped. Fibro sufferers have a lot of similar problems IBS is another common feature. I don’t feel I’m the same vibrant woman that I was. I’m also dwelling a lot on things and find it difficult to forget things that are troubling me. Why am I able to forget some things and other stuff eats away at you. Some days your at your wits end. Hope this all makes sense? 😩

[Darceydoris]

Hi

I know exactly how you feel.

I was diagnosed with fibromyalgia and CFS 6 years ago. I was working at the time but felt sick and completely worn out everyday. I had pain in both my shoulders and difficulty getting in and out of the bath. I get random pains in my hands wrists ankles knees legs. The fatigue is horrendous the insomnia along with it the brain fog also. I feel like my life has changed so much. I am having difficulty accepting the way things are I keep wishing for a miracle. I also find that people do not understand at. I had physio and saw a rhematologistdidnnt find vitamin any help. So sorry you are going through the same thing. I also have awful brain fog.

I hope you manage to get some help.

Take care.