I am so weary of this illness after all these years

[korculablue]

Hi everyone, I am an 81 year old female who was originally diagnosed with M.E. after over a year of being sent to various specialists and suffering the indignity of being told by some I needed psychiatric help as my illness was all in the mind. In more recent years I have been diagnosed with fibromyalgia and have many secondary problems. I live with constant pain and repeated attacks of IBS, arthritis and peripheral neuropathy in my feet and ankles, sleep issues... to mention just a few problems. I live alone.

[BlueMermaid3]

Hello korculablue

I can see that you are new to posting on the forum and so I just wanted to welcome you

I am so sorry that you are so down. It's not surprising my friend.

I have lived with Fibro & ME for 36 years. I also have many other conditions to contend with too.

Now you have got a diagnosis, is it possible for your GP to prescribe you with some medications to help with your pain?

Once again a warm welcome and I hope you enjoy the forum.

Wishing you a peaceful day

Lu xx

[korculablue in reply to BlueMermaid3]

Hi BlueMermaid3

Thank you for your kind welcome and so sorry you have suffered for 36 years with this debilitating illness and many other related conditions.

. I was diagnosed with M.E. in 1989 but last year was told I also have fibromyalgia. Like you I have many other conditions to contend with also. IBS and arthritis are just two of my daily and nightly tussles with pain and discomfort.

No, my GP wishes me his condolences but pronounced there is nothing he can do for me except to continue with co-codamol for the pain and diazepam for muscle relaxation. To help

Few people take me seriously as I have no 'bandages' to show. Even my own family take me for granted as they can see few outward signs so tend to forget I have this problem.

I am hoping to find some sort of help and/or support by joining here with like minded souls.

All the best to you too BlueMermaid3 xx

[ourfriendsinthenorth]

Hello Korculablue and welcome to the forum. It's a painful business to be told that your condition is something 'in your mind'. Fortunately the view of fibromyalgia is changing and more and more people recognise it as the serious and life impacting condition it is. Hopefully you will find friendship and understanding here on this forum, as well as information and sharing about what works for people as they come to grips with the challenges this condition poses, all best wishes OurFriends.

[korculablue in reply to ourfriendsinthenorth]

Hi there I live on the North East Coast of England. Thank you for your prompt and kind reply. Even though the medical profession is more willing these days to accept the reality of fibromyalgia many of them are of little help as in my Practice... Their attitude is that there is no cure so there is nothing they can do for me. I am prescribed strong pain killers and that is it! A close friend who was so ill with this condition was described by his specialist as the Norman Wisdom of the North. Sadly my friend recently died in his sleep aged 43 after suffering years of emotional and physical problems with fibromyalgia and other secondary issues. A post mortem came to the conclusion that he had a cardiac incident. When Paramdics were called out last year they sent him to hospital with a suspected heart attack and the hospital promptly sent him home with a diagnosis of indigestion. He was refused DLA as it was named then. Is it any wonder that so many people with this condition become depressed.

[klr31]

Have you tried a gluten-free diet? Also, have you had your B12, D and ferritin levels checked by your doctor?

Karen

[korculablue in reply to klr31]

Hi Karen,

Tried the gluten free diet but the doctor has never mentioned B12, D and ferritin to me I must ask him about that. My doctors are not very adventurous and anything like this they will almost certainly say I will have to pay. No problem with that though if these things are any help

Thank you Karen for the suggestion though. xx

[klr31 in reply to korculablue]

I wondered if a gluten-free diet would help the IBS, it does me to a certain extent and if I stick to it! Pins and needles can be an indication of low B12; I notice on another reply that you say you have leaking fluid and itching so wonder if you have fluid retention and/or liver problems - another blood test to ask your doctor for. Doctors aren't proactive so wouldn't suggest any of the blood tests I and others here suggested. I'm surprised that they're not just putting your symptoms down to your age! They seem to look for any excuse they can often. Do you think any of the medication you take could be contributing to your IBS? Good luck.

Karen

[korculablue in reply to klr31]

I recently had all my yearly blood tests and all was ok re liver et al. They used to be every 6 months but now yearly. To make an appointment you have to wait 4 weeks unless it is an emergency. I've tried a gluten-free diet but I have not noticed any significant difference. I am waiting to see the doctor re the possibility of fluid retention and will ask about B12 though you can now only see the doctor with one issue. One appointment for one problem. Things seem to be going from bad to worse in our surgeries. I might just buy my own B12 anyway.

Thank you Karen.

[klr31 in reply to korculablue]

Perhaps worth trying a good multivitamin and mineral too; on top of the B12 and perhaps D, and Iron with C.

Karen

[korculablue in reply to klr31]

I take vitamin C but as you say perhaps a multivitamin and vitamin C with iron plus D too. Thank you again Karen.

[Hidden]

I now visualise doctors as consultants I've engaged to give me an opinion. ( bit like a plumber giving me a quote for a new bathroom) I write down their opinions, consider them, then reject or accept them. I think in this country we've been brought up to believe doctors are akin to God and always right. No, they're not.

Just one thought, have you had all your bloods tested ? The numbness in toes and fingers can be an indication of low B12. B12 needs adequate folate to work in your body. Doctors will often describe a low level and f either as normal, within range, but they're not optimal.

I found I had low ( just in range) B12, GP wouldn't do anything so I treated myself , using support from the Pernicious Anemia Health unlocked site. Numbness, pins and needles and tinnitus disappeared in less than 2 weeks.

Worth looking at your blood results.

[korculablue in reply to Hidden]

Thank you o6hollyberry.

You are so right. Doctors are far from Gods and it is only in more recent years my doctors have begun to accept the reality of M.E. and Fibromyalgia.

I had my bloods tested years ago by a private specialist and was given haemoglobin injections. My present doctors seem to think all there is to do is givem me strong pain killers so I will more than likely have to pay for it myself. I was diagnosed with arthritis in my feet during January but the pain has spread to my ankles. Pins and needles right up to constant stabbing pain and deep aches while in bed especially. They think it might be Peripheral Neuropathy now and the itching is really intense too. My hands aren't too bad. I will check your advice out with the docs though as the skin is breaking near my toes and leaking fluid!