Getting a fibro diagnosis

HI

I posted a while ago about my chronic pain diagnosis, and that I was going to try steroid injections. I've had problems with neck pain since I was a kid. I'm now 28 and still suffering on a daily basis. After MRIs / x-rays /EMG etc I was diagnosed with chronic neuropathic pain and put on pregabalin, duloxetine, amitryptiline and codeine. I see a physio to help with movement as I have very restricted ROM.

A doctor ruled out fibromyalgia about 8 years ago, as i apparently didn't have enough trigger points. However, I'm finding myself having more and more symptoms of it. I get crippling tiredness, which I've always just attributed to the pain. I am also having stomach problems (ongoing for about the last year or so) and have seen that IBS can be a sign of fibro.

The strangest thing was the other day, when i started to feel as though my entire arm was sunburnt. I couldn't wear anything with sleeves as it felt too sensitive. I googled 'skin feeling sunburnt' and fibro was the main thing that came up. I know that google isn't a doctor (!) but it just seemedtoo coincidental. I also then remembered that I had the same feeling a couple of years ago down one side of my face and body, and the doc thought i may be coming down with shingles, but it never developed into a rash and i forgot about it.

Anyway, my issue is whether to approach this with my GP or wait until I see the pain clinic in January. I feel like the GP sees me as a bit of a hyperchondriac and doesnt take me seriously - and will think i'm ridiculous for 'diagnosing myself' via the internet, but I really can't cope with carrying on as i am.

Does anyone have any advice for the best way to tackle this? Sorry for the essay!

[RibvanRey]

I think that you have certainly got a lot on your plate. I am sorry that I have no more positive help. Your GP like all doctors will hate diagnosis by Google. Hopefully yours will be understanding.

The sunburn sensation that you describe is also something that can be caused by stress. As can IBS. Living with long - term chronic pain is stressful. For many patients it is very stressful. Stomach problems are common and that is without including the effects on our digestive system from the years of constant medication.

Regards Rib

[Hidden in reply to RibvanRey]

Thank you. It's a vicious cycle really as I love my job and have a pretty stable life at the mo- my pain is the o lu thing that makes me stressed, but that it turn leads to more pain! I'm wondering whether it'd be best not to mention my theory or my google research, but just complain of the stomach problems and skin sensitivity and see if they reach the same conclusion themselves?!

[RibvanRey in reply to Hidden]

I wouldn't like to say. Personally if it was me the I would not mention the research. Having fought constant unremitting chronic pain for the last 32yrs I know how tiring it can be. I have had nerve pains that could be described as similar to sunburn like pain.

Yes, I do think it is worth going to your GP but try and concentrate on getting the relief you need rather than a pet diagnosis. Although I am not pompously saying that your diagnosis is wrong. Leave it to the doc.

Rib

[Hidden in reply to RibvanRey]

That makes sense. Thanks for your advice. I have moved house and having to register at a new docs anyway, so hopefully this one will be more understanding. When I got upset, my last doc just said "you just need to accept that you'll be in pain for the rest of your life". helpful!

Thanks again for taking the time to reply. X

[RibvanRey in reply to Hidden]

Unfortunately for many people that conversation is true. It is also very frustrating for the doctors too. They spend years studying how to help people and cure them. Then along comes someone like us and they feel completely useless.

Of course they are not useless, no more than the patient with chronic pain. It just make us feel that way at times. Admittedly your GP sounded a bit abrupt. I would hope to hear a more supportive way of telling me or by giving me a leaflet detailing where I could find more help in both coming to terms with or options for dealing with this pain.

I find it rather sad that in the last 30 years that this simple abrupt "that's your life from now on, so make the best of it" is still being employed.

I wish you more luck with your new practice. Rib

[Grumpygrampa in reply to Hidden]

My doctor is the same just except being in pain and live with it but that's the hard bit.when you are in chronic pain you want to know what is causing it,then you don't feel it's your imagination and can try to get on with it

[Hidden in reply to Grumpygrampa]

Exactly. I feel like a specific diagnosis - more than just 'oh yeah, you're in chronic pain' would at least help give me some form of answer, and make other people realise what i'm coping with. The amount of people who I tell I have chronic neck / back pain and they reply "oh yeah, I get a bit of a stiff back quite a lot". Not quite in the same league!

[Megs64 in reply to Hidden]

Know what u mean love,iv had arthritis for yrs but now after a recent x,ray on my neck was told its ak spondilosis all the discs in my neck r knackered,I. Also off balance too ,in terrible p ain that I can't believe ,so terribly low

[Dragongirl21]

At the end of the day you know your body better than any one else. If you feel that you are getting more symptoms then I would recommend going to your GP and seeing if they can speed the process up at the pain clinic. I have had steroid injections and they did help for the pain for a few months but for me it didn't last for 6 months it eased for a couple of months then the pain came back and I put on a lot of weight from it. However, everyone is different the difficulty with medication is the side effects can be worse than the pain sometimes! As you say you can't cope the way you are and I don't blame you if you feel like it is becoming increasingly difficult from the tiredness, IBS etc then don't be afraid to go to your GP. If you have experience with your GP being a little insensitive then I would see another doctor and get a second opinion. Their job is to listen to you and to help you remember that don't suffer in silence. I hope your pain eases soon and you get the answers your looking for.

[gracesgrandma]

Hi Loufoy if all the blood work has come back normal then I would say that it does sound like Fibro. Also if you have read up on this you will also know that this won't be much comfort I'm afraid. I have had it since I was in my early teens, I am now 48, but only diagnosed 8 years ago. You just have to learn to find out what helps and also to pace yourself. The biggest thing though is listen to your body and mind and don't over do it :o) Take care xx

[Hidden in reply to gracesgrandma]

Thanks for your reply. Yes, blood is all fine (other than raised liver enzymes due to all the meds!) I realise a fibro diagnosis will still be incredibly hard to live with. I just think it will at least give me more of a definitive answer than just generic pain. Found it oddly hilarious how, after months of investigation into why i've had pain for 10+ years, the docs finally revealed that it was... drumroll please... chronic pain! I could've told them that! But it doesn't explain my constant exhaustion, crippling headaches and general all-over pain too. Just hope my new Gp will at least listen to me and take me seriously.

Thanks again for your input.

Louise

[Heorte]

Hi. You don't mention whether you take a med that will protect your gut from the long term effects of pain drugs? The one I have is Omeprazole and works well for me.

Also, it is possible to get intense skin aggravations if you try to vary / reduce certain meds too abruptly and GPS aren't always very savvy about this. Itsr a very intense reaction and comparable to shingles ...I know, I've been there. I think Gaba and Prey are bad for this.

Never mention the internet, it is an understandable red rag, but it would not be a lie to say that you got the info from a sufferer ! Good luck

[Hidden in reply to Heorte]

Ha I like that. Will definitely word it that way!

Have heard of omeprazole but not on it... will discuss that too. The skin thing wasn't a result of changes in meds, as I've been on the same stuff for about 6 years now. Strange. Anyway, thanks for the advice!

[johnsmith]

It is pure guesswork trying to have a guess at what to do and I could be wrong.

Firstly, The NHS have very little understanding, if any at all, how muscle behaviour contributes to pain and disability.

There is a hierarchy in the NHS where consultants have recognised higher legal status in law with Orthopaedic consultants near the top of the pile. Orthopaedic consultants do not know how muscles are supposed to work in the engineering system that is the human body. I would say the same about neurologists and rheumatologists. The clue is in the way they diagnose a condition. They do not apply hands on to treat a condition.

You need to see an Alexander Teacher to see if the way you are using your muscles are causing the difficulties you have. If you causing some of the difficulties you have, an Alexander Teacher can help you re-train your muscle usage so that you can improve your experience of your health.

Muscles which are over tense produce lactic acid which can irritate nerves. Overtight muscles can compress nerves and this causes nerves to complain. Overtight muscles reduce the supply of nutrient to body structures which need them and reduce the blood supply to remove waste products from body structures which need them to be taken away.

The width of a capillary is one blood corpusal. An over tense muscle which compresses a capillary can stop or reduce the blood flow through the capillary.

Hope you find this a useful avenue to explore.

[Hidden in reply to johnsmith]

Well done johnsmith! I didn't think this sort of suggestion would be allowed past the moderator. My pain is always helped with these type of straightening techniques more than any drugs!

[Grumpygrampa]

I to feel my doctor thinks I am a hyperchondriac but when you are in a lot of pain,you want answers you have a limited time with your doctor,so it does know harm to try and find answers I hope you find yours.

[LeilaBrickell]

Don't lose hope. If treated properly, you'll have a significant reduction in symptoms and a much better quality of life. For the meantime, are you taking supplements too? Ask your doctor if he/she can give you supplement. It may not be the cure, but will offer relief from your ongoing discomfort.

[Hidden]

The feeling you get could be caused by nerve damage, I get it a lot, along with tingling and slight lack of feeling but not quite numb. I have had discs bulging in my cervical spine for about 25 years now and that's the cause of the feelings I get, an MRI confirmed that.