Recently diagnosed with fibro and i dont know what to do!!!

[millzy]

I have realised i have had fibro for perhaps double figures in years!! I have had back pain for as long as i can remember but put it down to moving about a lot and rubbish beds!!! However about 2 and half years i go i started to get headaches......now my headaches are at the stage i have 1 day if im lucky every 3 weeks with no headache. It progresses into full blown migraine on average once a week. I have been on 10 different meds and none of them work. My pain throughout my whole body got worse over the past 12 months and i eventually got my diagnosis of fibro and everything i am suffering now fits into place but knowing what it is doesnt stop the pain. I have the usual constant aches and pains worse in the mornings, the tiredness and weakness is off the scale but the pain is what is driving me mental. I also get random nerve like pains throughout my body but predominently in my head. My doc prescribed me Citalopram and as soon as i got to the required dose i became extremely ill off side effects so had to stop. Through determination to get better i tried them again and the same happned again. INcidently this is what happens with all my meds my body just cant handle the side effects enough to get me to the doseage that may be effective. He has now given me Sertraline and after much persuassion some muscle relaxants being baclofen. I have also been diagnosed with pernecuous aneamia. He has told me to take b12 and folic acid supplements for 3 monthe before he will blood test me again but for some reason refused me the b12 shots. I also take riboflavin to help with tiredness and magnesium. I am getting no where with the meds i am being given but my doc is extremely reluctant to put me on some sort of pain killer and i dont know why as i am suffering immensely. I have had chiro and osteo treatment. Acupuncture, TMJ guards and countelss round of botox for my headaches. Nothing is helping me enough for me to lead a normal life. I have spent approx £2000 in total over 2 years trying to get help. My family and friends are lossing patience and i am struggling to cope with feeling like a burden. I am also still working full time in an office. Any kind of help, advice or guidance would be very much appreciated....i am frequently feeling like i have no way out. Why wont my docs give me the help i need

[Hidden]

Firstly if your GP won't listen to you then you need to see another GP , an understanding and helpful GP is the first step towards getting your fibro manageable ... I have changed surgeries and GP quite a few times .. Sometimes due to house moves sometimes due to unsympathetic gps....

I have tried so many meds I have lost count ... But I finally have found the right combination for me for night time ... I take the antidepressant dosulepin 75mg and 0.5 mg clonezapam they give me 7 hours of quality sleep every night..... Day meds I haven't found any yet I can take and after 23 years am not sure I am going to....

But I used to have migraines 3 days out of every 7 for years ... Nothing worked then My GP refereed me to my local pain clinic and I get injections every 3 months in my neck and shoulder muscles ... They unspasm and my headaches are gone ...

If you can find yourself a sympathetic GP and ask about injections. For your headaches if they can't stop them any other way

Good luck

VG x

[millzy]

Thankyou so much for your reply. This site i can feel is going to be a great help for me. I have also been seeing a neurologist for 12 mnths at the hospital. I have now been referred by him to a different neurologist in a different hospital so i will see what he is prepared to do for me. I have been trying for 12 months to get botox on the nhs and this other neurologist i have been referred to i know will prescribe botox. I have paid cosmetically up to now and so most of them would only treat me as if for cosmetic reasons in my forehead. I have found 2 docs who gave me injections in my back of head neck and shoulders but on both occasion caused me weeks of escruciating pain in my neck. So i didnt bother again. Prob because they were evidently inexperienced. Desperation will make you go through all sorts hey!!! This new neurologist will hopefully no what hes doing if he is happy to prescribe me injcetions!!!! Botox only helps me in reducing the intensity but not the frequency but at the mo ive just gone with any kind of help i can find. Id rather have one really bad day and have teh rest of the week to some normality. I have also had an occipital nerve block of which was completely ineffective. When you talk about injections do you mean botox or the nerve blocks? My headaches have been my prime concern but over the past 6 months the rest of my pain has overtook my headaches. Its literally from head to toe. Its all madness, i am still coming to terms with all this. I am 33. I self medicate at nights with cannabis which helps me sleep through most of the night. If i do wake up its only for a loo break most of the time so sleep isnt really an issue for me. Its the pain and tiredness and weakness i am struggling with but mostly the pain. Thankyou for your kind of advice and i will certainly look into further GP opinions and will also certainly give the injections another try if my neurologist is happy with that.

[ma33a2]

Hi

So sorry to hear of your experiences, it is awful to think that you are just starting on your fibro journey and how difficult it is to get the help that you need.

Like you, I think I had suffered from it for years but it is only when the symptoms get really bad & you are finally diagnosed that you join up all the dots.

I would definitely suggest seeing another GP who understands the condition. I printed information off the internet and took it to my GP and he put it onto their system so that all GPs could refer to it. I also took him a poem written by a sufferer of Fibro that explains what it is like to live with it, and he also put that onto their system.

I take a cocktail of drugs and still suffer with pain, sleeplessness and fatigue so I am still looking for the 'perfect' combination for me.

I wish you well and hope you get the help and support that you need.

Maz

[Rottie]

Its a viscious circle i used to stress because of the pain but the stress brings on higher pain, i have learnt not to stress as much i know its not a solution and i am NOT free of pain but every little thing helps.

[SuzyB]

Firstly don't panic. You will cope. I'm sure you'll have some good days & also days where you just want to scream but you will cope. No it won't go away & life pre-fibro has now gone. We all cope & I don't think any of us on here are super woman (apart from Very-Grumpy & Moffy) so stay strong & keep smiling as much as you can. Also try to find a local support group you can attend in person mine is really useful I'm just cross it took me a year to pluck up the courage to go.

[kiwibutterfly]

A good multi vitamin and magnesium and calcium supplements have stopped my severe migraines, it may help you.

[millzy]

Thankyou all for your kind comments, advice and support. I am so glad i have found this site knowing i can talke to people who actually understand where as my family and friends try so hard to understand but they just dont.

Yes i have recently started to take magnesium, B2 vitamin. Been approx 5 weeks i have been taking these supplements. How long did you find it took for them to have an affect?

I understand my lief will never be the same again and i accept it now i just hope i can get some kind of relief where i dont feel so poorly every single day!

[Hidden]

Stopping caffiene and aspartame stopped my headaches. There are foods which aggrevate pain. Its well worth finding out what your food triggers are and replacing them. Nightshades for instance really make me ache.....changing potato for sweet potato and pureeing carrot and parsnip instead of using tomato....has made a huge difference. Dairy is a big trigger for me x

[Hidden in reply to Hidden]

Yes caffiene and all artificial sweetners upset me too

Vg x

[kiwibutterfly]

a month or two. some vitamins like omega 3 and evening primrose oil for PMS/PMT symptoms can take up to 3 months. Remember everyone is different and what works for someone may not work for you, but I believe most people need vit supplements these days, I did a diploma. Let us know how you get on. I used to get 3 day migraines with sickness, absolute hell as the pain over my shoulder and over my eye was intolerable, especially at night. x

[kiwibutterfly]

reply to Stepper, as my reply button isn't working! - yes my neighbour found the same problem. Nightshade family including potatoes, aubergines, peppers aggrevate her arthritis. If it works, well worth it. Hard eating out though.

[Hidden in reply to kiwibutterfly]

Yes it's not too bad cos I eat rice. It's just picking where we go. Besides unless its a full blown allergy it's ok to keep to exclusion diets by 80%.

I know which foods are really going to have disastrous effects. Dairy for me is really bad. Mushrooms and caffiene are a real no no.

[millzy]

I literally only ever drink Volvic strawberry flavoured water and a de-caff tea in the morning. I presume its only the squash and fizzy drinks that contains aspatarme. I have been on a fresh food only diet for approx 1 month now. Now dairy i do tend to eat a lot of dairy but if i cut anymore out of my diet i literally wont have anything left to eat. I am over-doing and over-thinking this i know but i just need some respite even just for a week will do me fine. I avoid all reknown migraine triggers but these little beasts are undestructable hahaha!!! I used to always be a person who thought illness's need to be treated by a doc and a magic pill. Its from this illness i have realised that healthy eating and vitamins are an absolute must. Wish i would have had this attitude sooner in life i may not have ended up like this I am un-sure what you mean about nightshade food?

[Hidden in reply to millzy]

I hope you don't suffer from Irritable bowel as volvic flavoured water has lots of sorbitol in it which can give you terrible diahorrea .. I love the stuff but had to give it up so now I drink organic squash.. Not as nice but it has a better effect

[kiwibutterfly]

Millzy, there are families of foods i.e. foods that are genetically connected with similar proteins etc. the nightshade ones are related to deadly nightshade, the plant and it's not called deadly for nothing! Relatives of it are potatoes (staple of Irish diets and some British), aubergines, tomatoes and peppers. Some people will be more sensitive to these than others. All you can do is experiment. Introduce one at a time, a little at a time. It can take 3-4 days for food to get out of your system, so that's why some people go on a food family rotation diet. For me this is too extreme as I have had to cut out gluten, wheat, oats, dairy and more. But I have homeopathic treatment and convential if needed at The Royal London hospital for Integrated Medicine (fabulous), was The Royal London Homeopathic hospital.

[millzy]

Thankyou kiwi butterfly - i have arranged for a food intolerance test see what that comes up with....

[melodypond]

Hi

Go over to the Pernicious Anaemia forum. Your GP does not understand Pernicious Anaemia. You cannot convert the B12 into active b12 if you have PA and no amount you take orally will work. You need the injections or at the very least the sublingual type of B12 tablets that you dissolve under your tongue and which are more likely to get into your blood stream. Also visit b12.org, send them an email and in all likelihood Dr Chandy will contact you. Also by the Book 'Could it be B12' from amazon. Also visit the PA website.

Dr Chandy believes that Fibro or a lot of fibro symptoms can be down to B12 deficiency. I have fibro and believe there is an underlying cause - quite possibly B12 deficiency - I have just had further blood tests and the results should be in in the next couple of days.

My symptoms are very like yours, including headaches.

good luck

MP x

[millzy in reply to melodypond]

Hey Melody, how did you get on with your tests? I have spent a considerable amount of time researching this and the symptons of b12 deficiency mirror symptons of fibro!!! I think an appointment with a different doctor is in order! I have to wait until August before he will re-test my blood and then decide from there if he is going to put me on the shots!!! Ludicrous as my blood has clearly shown i have a deficiency and also deficiency in folic acid also. My mum also has PA and i have told him this. Maybe my doctor is just not very sympathetic to this kind of things. Goodness knows but i am intrigues to know how you got on? xxx

[melodypond in reply to millzy]

HIya

Yes because in the meantime you will suffer. Definitely see a different doctor - you don't have to say you have been searching the internet (it does irk them somewhat) - just say your mum has PA and the protocol with her has been the injections because her doctor has explained how you cannot absorb the B12 otherwise. The sublingual tablets can be absorbed under your tongue (it gets into your blood stream via those blue veins) so you could try that in the meantime but if you take those and have more blood tests your levels will be better, there's no point in testing once you are self medicating.

It is more likely your doctor doesn't understand and that is why he got snippy with you! But at the end of the day you are suffering - if you see a different doctor just say that you need the injections. It riles me that they will waste all that money on more blood tests and physio (just like me) when a B12 shot is so cheap and could solve so many problems.

As to my blood tests - the usual. Normal B12 but elevated serum folate (which you will see from your research shows I am not utilising it, and that is usually down to a B12 deficiency!), elevated bilirubin and some abnormalities with my liver function test - which happens all the time. My ferritin is low (21 but within range, so that will be ignored!), my cortisol is low end but again in range. My white blood cells are only just within range.

I have now paid for a private Active B12 test - don't know if I have PA or a blockage in the pathway which converts the B12/absorbs it but the active test will show how much B12 is reaching my tissues rather than what is just floating around my blood not doing anything. Once I have that result (either tomorrow or Friday) I am back to the nurse practitioner (who was lovely and listened) but I suspect that she won't trial me on the injections because I am within normal range (unless my active B12 test comes back low??). Will see what happens but if she won't I am going to take the sublingual tablets and then ask her to re-run the tests to see how everything looks again - that way it may give more clues but at least I am being treated, albeit by myself. I know I already have nerve damage by the fact I have no hair on my lower legs and often have burning sensations there. Also the rheumatologist who diagnosed my fibro found a heart murmer that no-one has detected before and I think is fairly recent (again, from your research you will see this is a symptom of B12 deficiency!) and I am worried what other damage has already been caused.

As to the headaches - two or three days in bed suffering is how I dealt with them though the amitriptyline I am on for the fibro has actually helped and I have just had one or two migraines since which have only lasted half a day or so. Keep hydrated and don't go too long between meals.

And let me know how you get on with a different doctor.

MPx

[millzy]

Hi Melody Pond. Thanks for your comment. Your absolutely correct about pernacuous aneamia. My Mum also has it - its heridatary i think. I went back up to my doctor for a second time to ask him why he hasnt put me on the shots and he did get quite brash with me when i questioned is treatment for me.....bizarre as he is usually very soft gentle and placid. I am the type of person to spend hours and hours on the net researching my symptons and that scenario day in day out will no doubt be fairly irritating for GPs these days. Incidently it was me who approached him about b12 deficiency and pushed him to send me for the blood tests. He says i have to take the supplements for 3 months and they they will blood test me again to see if anything is getting absorbed. But with pernacuous anaemia, it wont abosrb. All good and well he's making me do this for 3 months as he feels its appropriate but its me whose suffering in the mean time and even after 3 months its likley im going to have to start again. Doctors can be so frustrating. I have asked him for some kind of pain med but he has refused point blank and referred me for physio instead. I am happy to go with that as i have already done pretty much everything you czn think of to just stop the headaches......so physio ill give it a shot. How do you cope with headaches? OTC's dont nothing for me and i literally suffer with some form of headache each and every day

[melnpete]

hi ask your doc to put you on venaflaxine antidepression tablet best on the market also I take zopliclone at nite to help me sleep during the day I take naproxen 500mg and paracetamol and also if really bad headaches I take migraleve hope this helps

[merlinmac in reply to melnpete]

I agree with you over the venlafaxine it was the bestg antidepressant I have had and I am having bad time at moment been changing my antidepressants about going to GP this week and got appointment with psych on 13th going to ask if can go back on this as it was good for me also. I have Zopiclone at nite but try to only take it wen really necesssay. Want to avoid naproxen as I have acid reflux and believe it not good for you. Hope you dont mind me chirping in as I am so pleased I found this site yesterday cant believe how many there are of us. xxmerlinmac

[Allpainedout]

Hi I've just read you're first message Millzy and my heart goes out to you !!! I've had fibro for 14yrs or more , I was an independent woman with my own hairdressing salon lovely husband and two great kids !!! I still have the family but I no longer work its been a hard road but I am now settled in my life !!!! I try my best to be NORMAL but I make sure everything's at my pace !!!! The friends have all gone and to be honest that was my own fault as they kept inviting me out and I kept letting them down !!! Then I would worry so much about all the let downs and I was a nightmare to be around !!!!!! But please don't think that you're life's finished because there is light at the end of that tunnel !!!!!! Cognitive therapy helped me no end , that was through my gp and talking to people who understand was amazing !!!!! I still keep in touch with people I meet and that was six yrs ago !!!! I must admit I turn up when they invite me out because they know how I feel !!!!? I know its a lot to take in all at once , this site can be very helpful between us all we can answer just about anything !!!????

Good luck and welcome to the fibro gang !!!!!!xx

[merlinmac in reply to Allpainedout]

I am new to this site actually as of yesterday. What a find. To know you are not alone in this place helps. I am being referred for CBT and your words have given me hope. Like you I have had to give up working I was a Director/Company Secretary and find it terrible to have to accept that you cannot do what you did. I am suffering at the moment with headache and am antisocial and so tired and foggy and yes the answer is to pace yourself very difficult when you feel well you try and do all. I also have understanding husband dont know what I do without him he really cares for me. I will report back on my findings with CBT xx

[millzy]

Hi all pained out. Thankyou for your response. I have also handed my notice in yesterday. I feel i need to at least take some time out and rest properly and try get myself to some sort of functional state. My job and more so my boss is extremely tense and constantly negative and on the war path. He's a nightmare so hopefully leaving this place and taking some time out should hopefully get me on the right side of this horrible illness!!!! Does it ever get better is the only question both myself and my partner keep asking!!!!!! Is there a light at the end of tunnel or is this it now for the rest of my life...im only 33!!!! This forum is literally the best help i have had in all the time ive been poorly.