Is this all fibromyalgia : I'm... - Fibromyalgia Acti...

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Is this all fibromyalgia

Sturdy profile image

I'm concerned that I have maybe been misdiagnosed and the way I feel is really getting me down, the thought of being like this for the rest of my life is unbearable I will try to say all my symptoms and perhaps you would be kind enough to give me your thoughts.

If I stay at home and do nothing my pain is not bad, but if I go out somewhere maybe just to do a weekly shop or something similar I am in agony, not only when I return but for the next couple of days, my knees are the worst ( I have been told that my right knee should be replaced, but the consultant asked me to think about it, as it is a big operation and if my life is affected by fibromyalgia will it be worth it.) sorry sort of went of on a tangent then, also back pain, ankles, fingers, wrists, hips and just about anywhere. I cannot remember anything of what has been told to me, doing more than a normal person would do of silly and dangerous things putting a flame on an empty frying pan instead of the pan next to it with water and eggs in, putting something on the hob and then forgetting until someone else tells me they can smell burning, putting taps on and forgetting I had until flooded the kitchen, forgetting how to spell the simplest of words etc. etc. Periods when I just cannot force myself to do anything. Sleeping very erratically. I have suffered with anxiety and depression for a long while which with very strong meds I think is under control for now. I have also been diagnosed with COPD. and also have a sacral nerve simulator which was inserted due to overactive bladder. I think that sums up all my ailments. Although my husband has read various things about fibro he still doesn't understand and says things like yeah I'm in pain......tired too. By the way I am 60. Sorry for such a long message. I am taking pregablin, nortriptalin and 15mg morphine based patch. Love Sturdy

23 Replies
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Im wondering if you're in denial? Dont forget you can ask for a second opinion.x

Hi Sturdy

May I ask how you got your diagnosis? How long ago were you diagnosed? Was it your doctor or a consultant rheumatologist? What treatment s other than medication have you been offered? Have you been prescribed physiotherapy, or hydrotherapy, or talking therapy (e.g. CBT)? Maybe you could make an appointment to see your doctor to discuss your options, and suggest that your husband attends with you (it is very difficult to understand what living with fibromyalgia is like, because you look normal and people cannot understand how you can't manage to do all the things you used to do!) My husband is exactly the same... I have given him information to read, but he has very little concept of how much it affects our life.

Living with this condition is all about pacing yourself... doing small things, then taking a break..." fibrofog" (forgetting people's names, forgetting words, calling things by the wrong words, forgetting what I am supposed to be doing) is another part of this condition.... I make lists for everything... I can go to the shop and forget what I went to buy... I have to make a list for just 2or 3 items!! I keep a note pad by the telephone so I can write anything important down immediately, and I have a huge calendar pinned on my kitchen wall which I check several times a day.

I also get overwhelming tiredness, which will just hit me out of nowhere. I am 55 years old (but sometimes feel 105! :) ) and was diagnosed over 10 years ago. Have you thought about joining a local support group? Your local hospital may have details, or you could look on the website. If you are unsure of your diagnosis, then please speak to your doctor. Take care xxx

Hi, very well explained answer. Well done you! Th annoying thing for me is that I had to go private to get any diagnosis atall. Cost a great deal and still ongoing. Just discovered I have I've after 15 years, along with fibromyalgia. Suspected sjgoerns too, and lupus. Been a nightmare. Kind regards. X

Ibs, fibromyalgia,and suspected sjgoerns And lupus. Sorry tablet changes words. I know about fibromyalgia fog. Not lol .x

Have a number of specialists, rheumatology, immunology, dermatology, gastroenterology, oral medicine. Was told depression by GPS for 20 odd years.wot a waste of my life ,I was brought up to respect GPS. Not any more!

Sturdy profile image
Sturdy in reply to phlebo123

Thank you, your reply has made me feel better as it does sound like most of my symptoms does sound like fb. I diagnosed by Rheumoltoligist after see her for over a year at first she thought it was Wegeners granulomatosis but April she diagnosed it as fibromyalgia. I have not been offered anything over than what I have already said. My gp had already had me on all of this she increased the dosage. Thanks again for your reply.

house77 profile image
house77 in reply to Sturdy

Sorry Sturdy,

and all who have this awful disabiltity like myself, I have pains every day, everywhere too , caused by fibro and ostroarthritis ,.i may also have Aspergers to, not sure yet, having assessments , my spelling and brain fog is terrible at the moment, you must excuse me. Am quiet senseitive to medication, get lots of side effects , so just taking pain killers at present.

But try to except this is how you are now, and it may help you mentally. We have to do the best we can, and just cope the only way we know ..

Big hugs and

Aww, how many devices are you? This is the only way to deal with all the nasties, I totally agree. Not easy though!xx

Hi, very good post.thank you!

I too was diagnosed with asthma, then copd. Rubbish. Just fight on. Good luck

Thank you so much for taking the time to reply, I sometimes feel like I must be such a wimp or at least other people must think that of me. Xx

You are not a wimp!!!!! We all feel we are different and want to hide away at times. It's so comforting to know we are not imagining it all, and others,too many, are also in the same boat. Yes my family looked askance at me as if I was nuts, not to mention GPS. Take care.x

Hi Sturdy

I am so genuinely sorry to read this my friend and what you have described has all the classic traits of Fibro. However, many other medical conditions also have the same symptoms as well. Some can only be diagnosed via an MRI or specific blood testing. If you have doubts it would be best to discuss it all with your doctor and tell them exactly how you feel and what your concerns are? 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


Thanks Ken, a mri scan was suggested but unfortunately because of my implant i can't have one. Could I possibly ask you a question, with fm should I be driving? What I have been doing is playing it day by day if in lots of pain or my brain is like mush then I don't drive, but I was away until Friday and 70 miles from home so I had no alternative but to drive, I was in lots of pain from my knee before I started the journey, it was my worst driving experience ever the more the pain got the harder I had to concentrate, the harder I concentrated the more I felt drained. I used to often take myself off for a few days but it looks like it's something else that I used to enjoy has come to the end. Sorry for waffling I feel like an old old lady virtually just sitting indoors day after day, that's not what I had planned for this stage of my life. X

Hi, I ,too have not driven for 18 months, know what you mean!

You are not waffling, it's another independent thing we feel robbed of. No need to apologise to anyone.we all understand. Xx

TheAuthor profile image
TheAuthor in reply to Sturdy

Hi Sturdy

Under the Governments Driving Legislation it is not an illness that stops you from driving so if you feel that you are okay to drive then please do not worry. However, there is legislation over medications and driving and I have pasted you the link below:

I really am so truly sorry to read of your daily struggles and it is a shame that you are unable to have an MRI as it could help determine other conditions such as MS.

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 x

Hi everyone, wot lovely people there are on this site. Thank you all!

I will second that, Elizabeth. Thanks all for being there. X

Hi, you may be anxious and depressed because of your medical conditions, not the other way round.its not in your mind atall.take care x

I have wondered about this myself. Thanks xx

Oooh bless you. Could it be a form of lupus? That is worth looking at x

Did you have a good holiday? Hope so. Great grandaughter just arrived, 4 months.what a delight. See you later!x

So sorry you are feeling this way and not getting the support you need. I have had two full knee replacements and because of fibromyalgia we are hypersensitive to pain and so both knees still hurt, 3 years on. Have you had xrays on other bones because you obviously have osteoarthritis, which may be more widespread than you realise? It has been identified in my hands, feet, hips and back. Fibre fog is a frustration which we can all identify with. Getting stuck on words, losing threads of conversation, forgetting dates, names, events etc can be depressing but laugh at it or it will continue to pull you down. Pain is something you learn to live with but can be eased by controlled medication. You seem to be on quite a lot including morphine, which personally I would be uneasy to be taking long term. Have you had a review recently? If I spend all night in bed then it is a good night as mostly I only sleep for a few hours at a time and often end up on the settee. I reason that as we get older, I am 66, we don’t need as much sleep. I take painkillers, rub in anti inflammatory gel, have a hot drink and play a word game. It’s a different routine but it becomes the norm. I hope life improves for you shortly

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