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We want to hear from you: please tell us about your experience of the online community.

Hello, any room for a newbie?

Saffy

Just joined so feeling a bit overwhelmed.
I've had fibro for 20+ years and am so relieved to find a support group.
I was knocked off my mobility scooter 4 months ago and have had pain in my head and neck (in addition to my usual pain). I asked to see my Dr hoping for an x-ray but was sent for physio without him even seeing me.
I've just had my 2nd session and the pain if far worse.

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Davegreaser70

Hi welcome! I'm a newbie too. Just joined. Sorry to hear about your mobility scooter mishap. Some people out there are ignorant selfish people. Sad to hear you haven't been seen by Dr. I have had physio, but didn't do much to help. Don't be disheartened. Stay strong!

Adrian_Scope

Hi @Saffy and welcome to the community.

Really sorry to read this. There's quite a few people here with fibromyalgia so hopefully you'll get plenty of support from those who can really relate. Are you going to try and go back to your doctor?

Adrian_Scope

Welcome @Davegreaser70. Would you like to tell us a bit about yourself?

Davegreaser70

Hello. A bit about me.

I used to be very active for many years but 4 years ago, when getting ready for work, I sat up. Worst thing ever! I was in a LOT of pain. Thought I had trapped or irritated a nerve in my back. Took 2 days off work, and was in agony. Pain and tingling down BOTH legs. I had slipped a disk in my back. Agony is a mild word. Hobbled to work (the small company I worked for were absolutely awful (mild way of putting it) and sacked me a month later for being disabled.

Disk was out for 18 months, then clicked back into place. When it did, it trapped a nerve in my spine. That took another 18 months to come out. Now my disk is permanently damaged, I have sciatica permanently down my left leg, pain in all my back. Nobody wants to employ me, as "You are a risk" as one employer put it.

Chloe_Alumni

Hi @saffy and a warm welcome to the community! I'm sorry to hear that Saffy, I really hope the physio does start to work and you're able to find people on here to connect with

Welcome @Davegreaser70 and thank you for sharing this. This sounds incredibly painful and must have come as a shock! I'm sorry about your work, what kind of role was it? Please do let me know if there is anything I can do to help

brydiedwards

Welcome @Saffy

That sounds very frustrating, it can be horrible feeling overlooked like that. I hope the physio starts to take effect, or if not that you are able to see your doctor to investigate it. In the meantime we're hear to support/listen whenever you're feeling overwhelmed!

Saffy

Thanks. My surgery has changed so much in the last year. New doctors and a triage system, so it's very difficult to actually see a doctor and mostly it's just a phone consultation.
I phone to ask a doc if I needed x-ray, was triaged and sent for physio.
The pain I'm in now makes me wonder if my physio is causing more damage. He's very rough with me, even though I said I've got fibro. His comment was he's going to get me hop, skipping and jumping!!!!

Chloe_Alumni

Hi @saffy, I'm sorry to hear he can be rough, I imagine that will just make you flare up if done incorrectly. How was he when you mentioned fibro?

Ails

Hi @Saffy and welcome to the Community. So sorry to hear about your accident. I hope you are doing ok. All the best with physio.

Hi @Davegreaser70 and welcome to the Community also. I'm sorry to learn you have been left with Sciatica. My husband suffers from that as well so I know how painful and debilitating it can be. All the best for the future.

steve51

Hi @Saffy

Welcome to our online community /family.

I am very very sorry to hear about your current situation.

I have had "Chronic Pain" since 2005.

As my Pain is "Neuropathic"

I'm unable to have any Physio as this would only make things much worse.

@steve51

Saffy

Chloe_Scope said:

Hi @saffy, I'm sorry to hear he can be rough, I imagine that will just make you flare up if done incorrectly. How was he when you mentioned fibro?

To be honest he didn't really react and was more interested in sorting my neck pain.
He gave me some really hard massage on my shoulders and neck and it was so painful I still can't lift my head properly, I've been in tears with the pain.
I'm very sensitive to touch and the slightest knock really hurts, so I'm not really surprised I'm in pain. I don't know whether to mention it when I next see him as he seems to think that exercising is a cure for nearly everything.

Saffy

steve51 said:

Hi @Saffy

Welcome to our online community /family.

I am very very sorry to hear about your current situation.

I have had "Chronic Pain" since 2005.

As my Pain is "Neuropathic"

I'm unable to have any Physio as this would only make things much worse.

@steve51 I've had fibro since about 97 so have spent years learning to live with it and adjust my life accordingly.
I'm v surprised I've been told I need physio as touch is extremely painful. I don't think whoever it was who told me I needed it (Dr, nurse practitioner, cleaner!) Had actually read my notes.
It's amazing how you adapt to chronic pain but it doesn't make it easier, you just get good at pretending it's ok.

Saffy

Adrian_Scope said:

Hi @Saffy and welcome to the community.
Really sorry to read this. There's quite a few people here with fibromyalgia so hopefully you'll get plenty of support from those who can really relate. Are you going to try and go back to your doctor?

Don't know whether there's much point asking to see my doc, he's keen on phone consultations and I don't think you can really assess someone's medical condition that way.
I miss the surgery the way it used to be, they were brilliant.

brydiedwards

@Saffy I imagine it must be so frustrating when treatment becomes less personal, especially with chronic/ongoing illnesses. I've had a similar experience with feeling my physio has been too rough, including being repeatedly told to keep my feet forward instead of inward and the physio completely ignoring my ankle deformity. I definitely think it's worth speaking up if you feel they are being too rough but I understand it can be hard being assertive with a medical professional. At the end of the day you know your body/pain better than anyone so hopefully they will listen to you

Saffy

brydiedwards said:

@Saffy I imagine it must be so frustrating when treatment becomes less personal, especially with chronic/ongoing illnesses. I've had a similar experience with feeling my physio has been too rough, including being repeatedly told to keep my feet forward instead of inward and the physio completely ignoring my ankle deformity. I definitely think it's worth speaking up if you feel they are being too rough but I understand it can be hard being assertive with a medical professional. At the end of the day you know your body/pain better than anyone so hopefully they will listen to you

Thanks @brydiedwards , I think I'm definitely going to a few words with him next time. He probably thinks he's helping but I don't see it as help if I'm left in so much pain. At the moment it feels like I've had boiling water poured on the back of my neck and I can hardly bear to touch it.
I'm not due to see him for 10 days.

brydiedwards

@Saffy Wow, I'm sorry the physio has left you in so much pain. Fingers crossed he's considerate and you can find something that works for you.

Saffy

brydiedwards said:

@Saffy Wow, I'm sorry the physio has left you in so much pain. Fingers crossed he's considerate and you can find something that works for you.

Thank you. I think I need to make sure he understands what fibro entails but without questioning his professional ability/qualifications.
A lot of people, including many professionals, think it's all in the mind, but one bad day inside my life would change their minds.
I need to work out what to say to him before my next appointment.

Chloe_Alumni

Morning @Saffy, I'm sorry it had such an affect. It's hard for us to suggest things because we are not medical professionals but it is important that your physio knows the effect that the session has had on you. I hope they become more understanding!

Saffy

Chloe_Scope said:

Morning @Saffy, I'm sorry it had such an affect. It's hard for us to suggest things because we are not medical professionals but it is important that your physio knows the effect that the session has had on you. I hope they become more understanding!

Thanks. It's just trying to find the right words without upsetting him ?

emmarenshaw

Hello @Saffy welcome to the community. So sorry to hear you are in so much pain. We’re all here should you need any help or support at all.