Support

[Misstinkerbell]

Hi been diagnosed with fibro recently what sort of support should I get from professional such as physio, etc.. As I am very unsure of what to expect or ask for. Or any other suggestions of professional support?..

[lou60]

You will find lots of help here, lots of information on FibroAction site, as for professional help this should start with your GP you generally need referral to all the other services, it can take time. That's where this forum is so great you can get advice from everyone. Wishing you well. Lou x

[Hidden]

Hi NikkiJT

This is a difficult one, because there are lots of different things that you may or may not need.

There is a vast array of help out there dependant upon your needs.

Were you diagnosed by a Rheumatologist or your GP?

Please bear with me here. There is a very loud live band "singing" near my house and even with all windows closed I'm having a lot of trouble concentrating!

Because Fibromyalgia affects most of us in very different ways there is no set format as to what to expect.

For example some people have more pain than fatigue and vice versa. Some people experience excruciating pain and others not so much.

Hopefully you might be able to see where I'm going here.

A lot of people swear by Pain Clinics, others by having CBT.

I'm sure there will be someone along soon who will explain what I'm trying to say in a far better way, but basically what I am trying to say is it depends what exactly you feel you need the help for most which will help you to decide where to start.

I've probably been of no help at all!

Please feel free to message me if there's anything specific you'd like to know.

Lu xxx

[Misstinkerbell in reply to Hidden]

Hi I was diagnosed by rheumatology and my G.P says he is not so sure about it despite me having lots of the symptoms. I kind of feel I have been dropped in the ocean and left to swim home, but I really don't know which way is home???? So I feel my support is going to be limited really. Lost @sea.com!!!!!!

[lou60 in reply to Hidden]

You've been more help than I was. Lou xx

[Hidden in reply to lou60]

Thank you

That blasted band is still playing!

Not good when you have a cracking migraine.

Lu xxx

[Hidden in reply to lou60]

Sorry ... Feel I should clarify my reply to you! I wasn't saying I agreed my answer was more helpful than yours at all. I was just saying thank you that you didn't think I'd written a shed load of gobbledygook

I've been in horrendous pain today and have had real trouble concentrating, so thank you for making me feel better.

Lu xxx

[lou60 in reply to Hidden]

I took no offense at all, you were far more informative than me. Lou xx

[Hidden]

Hi

Unfortunately that tends to be the way things go with Fibromyalgia. I was diagnosed by a Rheumatologist, given a leaflet and then discharged back to my GP!

Is there a possibility that you could change your GP practice or at least see a different doctor at your surgery?

What do you feel you need the most help with? Is it the pain, fatigue, lack of sleep?

The way you are feeling is not at all uncommon with Fibromyalgia.

Probably the best way to tackle it would be to decide which of your symptoms is troubling you the most and then ask your GP for help with that.

Lu xxx

[TheAuthor]

Hi NikkiJT

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum, and it is

wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun! I think that you will find that everybody here on the forum can, and will, understand exactly where you are coming from. So I genuinely hope some of the ladies can come along and give you their experiences of Fibro?

I have pasted you a link below to our mother site, FibroAction and I genuinely hope that you find it very useful? It has loads of useful Fibro information on the site from symptoms, treatments, benefits and groups:

fibroaction.org

There are so many avenues that you could pursue including Physiotherapy or a Pain Management Clinic, or see a Rheumatologist? As these Specialists can help with your Fibro? It may help to discuss referrals with your GP and ascertain what referrals they are willing to afford you?

Medications could also play a big part in any treatment, and again, there are plenty to investigate and it will be worth reading through our mother site to gauge a feeling of what you feel may work best of you? However, in these early days it will be a case of trial and error with drugs? But please do no lose hope as what medication works well for one may not always work for another.

I was also wondering if you have applied for any disability benefits? I have pasted you a couple of links below from the GOV.UK site pertaining to this:

This first link is called How To Claim PIP which is Personal Independence Payment, this is a non taxable benefit and can be claimed regardless of whether or not you work and is payable on how your disability affects your life:

gov.uk/pip/how-to-claim

This second link is called How To Claim ESA which is Employment and Support Allowance. If you’re ill or disabled, Employment and Support Allowance offers you financial support if you’re unable to work and / or personalised help so that you can work if you’re able to:

gov.uk/employment-support-a...

I want to wish you all the best of luck and I genuinely hope that you can find some resolution and relief to your Fibro.

All my hopes and dreams for you

Ken x

[Julie63]

Hi Nikkijt, one thing I would suggest is asking your gp if they have counselling. I have found this to be a geat help. It would give you a chance tot talk about how you are feeling, get your head in order, help you get to grips with your diagnosis. Oh, And welcome, by the way! Look forward to chatting with you, gentle hugs, Julie x

[Lruk]

Hi Nikki and welcome. I will share my experience and maybe that will help you a little. Like you I was (eventually) diagnosed by my GP. Going back over my medical history shows that I have almost had a season ticket to physio so I wasn't totally shocked at the diagnosis but I knew nothing about fibro. I have more pain that fatigue, though I don't totally escape that one, it just isn't as frequent. The pain is daily, mostly all day and unrelenting, despite the drugs.

Because I was in so much pain I often went back and forth to my GP, which mostly resulted in a change to the medication. After about 6 months of this I saw a different GP who referred me to physio and occupational therapy. The physio was useless - I was 'taught' how to get in and out of bed, a chair and my car! She did however refer me for hydrotherapy. I got 5x 30 min sessions and was then signed off with my exercise sheet in my hand. The local pool is not as effective as it is fare too cold. The occupational therapist was super and gave me all sorts of gadgets that let me do things I used to do such as a perching stool, a gadget for lifting things off the floor and a wonderful tool that opens cans, among other things.

After a nasty fall down some stairs, I was yet again at the GP, another different one again, who referred me back to physio with a suspected rotator cuff problem, gave me a steroid injection and a course of acupuncture. The steroid injection made no difference but the acupuncture removed the pain for 2-3 days but it then came back worse than ever so we agreed it wasn't working in the way we both hoped so it stopped. During all these visits I was encouraged to seek voluntary work to keep myself busy. This despite the fact that I could barely get dressed without wanting to cry. The physio worked out that my rotator cuff was fine and the pain was actually coming from my neck. He gave one exercise that has really helped reduce the pain then signed me off because to do anything more raised the risk of making everything worse apparently.

I then went back and saw yet another GP and asked for a referral to a pain clinic in order to be able to do the voluntary work that had been suggested. This referral was something I had previously asked for many times but was always told that until my pain had stabilised it wasn't worth it, which seemed like a contradiction in terms to me. Well it stabilised at agony level so a referral was duly made and I drove the 90 minutes to the pain clinic. It would have taken about 3 hours each way by bus, well about 3-4 buses, which would certainly not have helped the pain.

The good news is that I am apparently a perfect candidate for the pain clinic and have been signed up for a 12 week course of 2-3 hours each week. I have no doubts that my pain will be much worse on those days because I will be seated for about 6 hours, 3 of those on really uncomfortable seats. I have decided that once I have completed the course at the pain clinic, unless my pain is greatly reduced I am going to ask to see a rheumatologist, just to make sure I have covered all the bases.

It is just as well I have been medically retired, though my pension provider and my GPs all seem to feel that at only 55 I have many years of useful employment ahead of me, if only i wasn't in agony almost all the time.

please don't feel too downheartened, I know my case is not typical and that we are all different, but I hope that you might find an avenue worth exploring from my tale. I have found that you do need to badger GPs to get referrals made and sometimes it is worth it, but if you know what to expect beforehand anything more is a wonderful bonus. Good luck, Linda.

[KernowKitty in reply to Lruk]

thanks for this Lruk, has been very useful for me(carer for FM sufferer).

[Misstinkerbell]

Thank you Linda, your story rings lots of bells with me and has helped a lot . Take good care of your self and I am sure we will speak again soon. Xx

[RieDe]

Hi, as I'm only recently diagnosed and put on loads of meds I really wanted to explore alternative therapies. Some are of course private and astronomically expensive but I spoke to my Gp and I have an appt with her this week to see what can help under physio and occupational health on the nhs. I also spoke to my children's health visitor who has put me in touch with local groups who can help and advise.

Hope that helps