Anyone Have Experience of Fibro Treatment/Help @ P'boro Hosp?

[Angel_153]

Hi,

I'm in Ramsey near Huntingdon, I was dx'd with fibro after more than 30 years of seeing every specialist in this country and some in America too - worryingly, the dx was made within minutes by a rheumatologist at Hinch, then again (when Hinch didn't folllow up) by another rheumy at Addenbrookes.

My fibro and chemical sensitivites are so advanced now (after 30 years plus they would be) that I can't tolerate any of the normal drugs used to help - so no amytriptaline, tramadol. gabapentin, pregabalin, etc etc. Can't take so many things, no NSAIDS, no pain killers other than opiate group and Imigran (everything I can't tolerate causes violent vomiting, migraines, etc)........have been trying to help myself nutritionally for years.

Was in physio at Hinch before the dx (post breast cancer), which was helpful, until someone stuck their oar in when I refused to have a completely uneccesssry op on my shoulder. I was then dismissed from physio on the grounds that I wasn't helping myself. Managed to get put back into physio because of the fibro dx and my awful muscle pain, especially bad with my back reacting to standing up or walking with major spasm attacks, but new physio has been refusing to do any hands-on work for 99% of the time, on the grounds that she has medical papers that say it is damaging to do manual manipulation on patients!!

I would dearly love to get to the hydrotherapy pool that I know Peterboro has. Has anyone here got any experience of being treated for fibro at P'boro? Can patients from my area get referred to P'boro? Am thinking about asking my GP.

Have been seeing Addy's for 2 years now, about the fibro, and for more years than I care to remember while we were trying to find out what the hell was wrong with me. The rheumy at Addy's has not been able to prescribe meds, because I can't take any of them. He said he was going to arrange home physio, but hasn't. He was also going to find out about me using P'boro's hydro pool, but hasn't. He was going to have a phone appt with me this week, to find out how I'm getting on with the home physio (which I have heard nothing about), and he has even managed to miss that. I'm fed up with all that - the trip there and back puts me to bed for a week. Peterboro would be a lot more convenient for me to get to.

Does anyone here have any experience of being treated at Peterboro? Does anyone at P'boro have

a)any knowledage of fibro,

b)any interest in finding out the root cause of fibro (which may be different in different people), c)any interest in any research anyone else has done of causes & treatments for fibro?

and

d)is anyone at P'boro any good?

Hope someone can help, - I see from some previous posts that there is at least one person who was here last Feb from my area - if there are any fibro people from Ramsey/Huntingdon, I'd love to meet up for a coffee, it might be useful to swap notes/info etc nolt to mention seeing a friendly understanding face who gets what you're gong through!

Best wishes to everyone,

Angel153

[deelightful]

Hi Angel153

So sorry to read all your problems with hospitals. Ring the consultants secretary, he my just of forgotten

I use to live in Whittlesey, had great doctors in Queens Street. was there for 11 years, moved away in 2002. All those years I had been going complaining of body wide pain, even ruptured disks in my back. I had never heard of Fibro then, they never mentioned it either. So like you for 30+years I have been in pain.

I did go to the old Edith Cavell Hospital, before the new city hospital was built. I expect it is similar if not better. I had acupuncture for months, it was wonderful, it helped me stay of drugs as much as possible. I also went to an osteopath for almost a year, as I waited for an appointment with a rheumatologist. This appointment came 9 months after I ruptured my disks. If it had not been for this private treatment I would have lost my job, and unable to walk. When I did see him, he told me it was a waste of time as I could now walk. A horrible man. He never check me over at all. Perhaps medical awareness of fibro is better now than ever before.

I would pursue being transfer to Peterborough, you don't know until you go. Doctors change, with the new super hospital you should get better care. I can't believe they make you travel so far. I would love to hear more, if you want I can always give you my email.

Look forward to hearing from you again and wish you better health.

Your fibro friend

Deelightful

[Angel_153 in reply to deelightful]

Thanks D !

Where did you move away to? Are you getting any decent treatment where you are now? Sorry to hear of your experience with that horrible doctor - there are far too many of them around.

Yeah, I COULD ring his sec - I've done so before and it's got me precisely nowhere - I rang about the occupational therapy, the physio, the hydro, and none of them have come to pass. It shouldn't be MY job to remind him of an appointment HE made - it was to replace a face to face appt, since a)it's too knackering (I can't believe they make me travel that far either, even going to the local docs 3 miles away can put me to bed for nearly a week, Addenbrookes almost always puts me in bed for a week minimum, and I'm far closer to Pboro anyway, damn them, it was bad enough when I had to go for radiotherapy at Addys because there wasn't anywhere else closer), and b)it doesn't seem worth the effort for "What meds are you on? How are you feeling? I'm sure you look better [don't listen to how I actually FEEL then] See you in 3 months [for another useless, get nothing done appointment" Which costs my GP's practice £'s.

I'm going to tell my GP what this rheumy has done with my phone appointment - hopefully he won't get paid by my GP's practice - it's usually the patients who get the black mark of a DNA (did not attend) next to their name!!

Yeah, I'd also like to think that fibro awareness is better now, and awareness of it might well be, but treatment and causes, and especially alternative treatments, still seem outside of the understanding - or even interest - of most docs, even the rheumys They just want you on pregab, or pentagab (when normal GABA (gamma amino benzoic acid) would be better, along with 5-HTP instead of SSRIs (I could go on, I've been studying natural alternatives for a very very long time) and flipping tramadol - which turns me into the girk from The Exorcist, LoL. None of them seem interested in helping make you better, moving towards a solution, moving towards understanding what causes it, just which drugs they can put you on.

I know from my experience with chemo, (which turned out to be one big fat lie about definitely increasing my chances of 5 year survival from diagnosis date - turns out he meant it was 5% effective, ie, that there is a 95% chance it's had no effect on the cancer at all whatsoever, and at the same time has kicked my fibro into unmanageable territory, taken away my working life, my mobility, etc etc) that hospitals buy in bulk from the drug companies to get the discount on price. Then it's the consultant's job to "sell" the treatment, whatever it is, to the patients. Presumably, this applies not only to chemotherapy drugs, but also to any other drugs that the hospital pharmacy stocks or orders in. So it would appear that they all have a vested interest in persuading patients to try the drugs they suggest. Who knows what pressure consultants are under to achieve targets for drug sales? I know surgeons are under pressure to achieve the right "conversion" figures each month - that's the number of out patients they convert to in patients, ie, how many out patients they convince to have an operation. I know that because I refused a shoulder op (on perfectly good grounds, I wasn't being silly) and the consultant got up and left the room, wouldn't take my proferred hand-shake, say goodbye or anything, just upped and stormed out. I asked why, and that was what I was told by staff at the hospital. Surgeons have to achieve their operation targets (their conversion rate) or their presence at the hospital is questioned. It can't be nice for them, but still....it isn't right to subject patients to toxic meds or unnecessary ops just so consultants keep their jobs!

Ok, am ranting now.......by all means drop me your email - are you on FaceBook? Does this site have a Private Message facility?

Hope you feel better and find some good help soon,

Angel xXx

[deelightful]

Hi, yes I am on facebook "Dee Smith". what about you?

The more I read the more it disturbs me that the medical profession does not always have us in mind, the best therapy too.

I asked for 7 years here in Lowestoft to get and appointment with the Rheumatologist, finally I got one last October. OK her told me the same as the pain clinic, but you have to have him give you a diagnosis to get help. I have not been able to go to work for just over 10 years, I hate it. But, the less I do the less pain I am in. The more mobile I am the more pain.

I am on Gabapentin too, It does not help any more, I was on Oxycontin, thankfully I took myself off it, with the guidance of my GP. (The only thing it did was get me hooked on the drug, nasty stuff - should be banned) Now on Duloxetin·Hydrochlorid, thyroxine (under active thyroid) other meds for IBS. I try to cope with my IBS, CFS, FMS, Thyroid and food intolerance with not a great deal of success as one aggravates the other. I do get very depressed, especially as my husband suffers from a sleep disorder connected to his diabetes. He sleeps alot which leaves me on my own. We are not good for each other. I have my cats to keep me company. That is a plus.

I have found that this site is great for airing your worries. I am trying to be positive and make sure that every day if I can accomplish 1 thing that that is a bonus. When you have to live with these problems you must try and focus on something positive, otherwise you become angry at yourself and everyone else. It is hard but I intend to work hard in making my life happy and not be as self-centred as I have been for so long. What have you found that has helped you all these years.?

You asked where did I move to from Whittlesey, we went to Spain for 2 1/2 years, them we came back as it did not work out, I was so ill out there. It was fun while it lasted. Then we moved here to just outside Lowestoft. A beautiful part of the world, a bit different to the Fen's.

Hope to hear from you soon, nice to meet you too. Stay happy

Deelightful

,

[Angel_153 in reply to deelightful]

Hi Dee

Yes, I'm on FB - I'll come and find you tonight! Don't really want to put my name on a public forum, (ie, here), so just don't reject any FB Friend Requests without checking if it's me!

Can't believe you had to ASK for 7 years to get a rheumy appt - my oncologist got so fed up with me continually moaning about muscle pains that he referred me and I was seen in the same hosp within a few weeks, I think. Certainly within a few months.

Can't you beg your GP to help find you a better rheumatologist? It doesn't sound as if the one you're seeing is helping much. I've emailed my lovely GP to ask about Pboro, waiting to hear back. I expect he'll do that for me if he can - it'll probably turn out that he can't refer me because technically we're Cambs not Lincs.

I'm like you - haven't been able to work since 2007 (was coming up for my final year in a science/arts degree, with a teaching job waiting for me on graduation) and the less mobile I try to be, the better my pain levels. My back strenuously objects to me standing up, walking, moving. I hate it too.

I've also got hypothyroid, hyoiadrenal, IBS, a host of intolerances, exhaustion, migraines, nausea, etc etc. I feel that depression is part and parcel of fibro, because fibro (not to mention hypothyroid) will screw up hormones, and in particular we don't make enough serotonin to enable us to relax, and it's serotnin that keeps you happy. You might find that eating cottage cheese helps, as it's high in the substance that serotonin is made from. I survived a Suicide Summer by eating bucketfuls of the stuff, although currently I can't tolerate it because it gives me migraines. I know I have horrible fits of depression that definitely aren't caused by external things or events, it feels a lot like PMS used to -like a tsunami that overwhelms you from the inside, and there isn't very much you can do about it except have an understanding partner (I only got one of those in 2010, the previous one was of the opinion that there was "no need" to be depressed - despite suferring from depression himself ! There are supplements you can take, I can give you details about them if you're interested (no, I don't sell anything, and I long since stopped working as a nutritional consultant, although I did used to for a few years). It's tricky keeping on top of the ever-changing chemical landscape of a fibro body - everything is in such a state of flux, it's a wonder we survive at all, frankly!

I refused Gabapentin - if it doesn't work for you anymore, you might want to stop taking it (undersupervision, of course) and try replacing it with the natiral GABA instead - Gabapentin exists because drug companies cannot make money from any substance that occurs naturally in nature, so they have to invent a chemical version of it so they can patent it (can't patent a naturally occurring substance) and that's where they make their money. It's also the reason why most drugs have shitty side-effects - the drug companies can't exactly replicate the things they see in nature, so they act differently in the body.

I was on oxycontin (I can only tolerate the opiate family of pain killers, everything else gives me migraine and or throwing up for England) but as I'm on Oramorph and dihydrocodeine, my GP stopped the oxy. I couldn't take the coloured capsules, I had to take the white pills, which you have to take regularly to get any benefit from, and I'm rubbish at remembering to take everything anyway, so it's no great loss

I've got cats, too They're a great comfort. Sorry your relationship isn't helpful to your situation........I was with my previous partner for 8 years, and the thought of being on my own, with all these health and energy problems, terrified me. But I did eventually give him his marching orders, AND met someone far far better to and for me, and we're still happy after two and a bit years. It takes a lot of courage to make the break, even when you know the relationship isn't helping you at all, and is actually stressing you out, making you feel guilty for not coping with everyday tasks, etc.

My brain's on the way out, so I'm going to have to stop here now I've been online completing a huge nutritional supplements order today (it's taken me around 6 months to get to it, and a week of actually doing it to get it done) and I'm knackered. I'm going to go to FB now and see if I can find you

Sorry if I haven't responded to everything in your reply here - just hit that brick wall that stops your brain working.............oh, Spain must have been interesting - I lived in Turkey for a year, that was good. But don't Spain have a horrible attitude to fibro? I was told they regard it as a mental illness, a "Fibromyalgic persona", like it's a choice someone's made conciously! Idiots!

Catch you on FB, spk soon,

Angel xXx

[Angel_153 in reply to deelightful]

Ok Dee, FAR too many Dee Smiths on FB for me to find you without some clues! Can I have some clues, please? Some people have their birthday listed under their profile pic when you search for a name. Or there might be friends or family names I can see on your page. I need something to identify you! I know you aren't in the US, London, and aren't working, but it still leaves a lot of Dee Smiths!! LoL

AxXx

[deelightful in reply to Angel_153]

Now there's a game,facebook.com/profile.php?id... there you go. Try this link.

Look forward to your contact. Hope today is a better day.

regards

Deelightful

[Angel_153 in reply to deelightful]

Are you online now? That link doesn't work -copied and pasted it into my browser, it says it doesn't exist and am I sure I've soelled it correctly? LoL

If you're online, I'll give you a link to mine, then take it straight off here immediately you've got it.

Let me know, I'll keep checking. It's 7.30pm now.

Angel xXx

[Angel_153 in reply to deelightful]

8.20............ where u at, Dee????

A