No Fibro Specialist in Portsmouth

Anything to do with the NHS or Private Healthcare.

Moderators: perseus, *Lisa*, FluppyPuffy

No Fibro Specialist in Portsmouth

Postby scottydog » Mon Oct 27, 2014 7:21 pm

Hi all

The rheumatologist, on diagnosis, sent me off with a leaflet, told me to seek graded aerobic exercise and look on the internet. My GP wasn't impressed and said he could have diagnosed me and what was the point of not giving me their specialist advice. So he wrote back and asked for details of who could assist me, in Portsmouth, and the response was no groups are running anymore. Presume that's because of lack of NHS funding!

I explained to the GP that I can't move around much (he could see I had a cane and was very unsteady), let alone do aerobic exercise!! So I suggested hydrotherapy before moving on to aerobics!!! I have a months wait but at least I feel I have a chance to maybe make a start on feeling better?

Yesterday I started a pacing\coping diary and actually managed to do half an hour around the flat in the morning and the same in the afternoon. Today I went out, in the car, with the hubby but stayed out longer than anticipated for 2 hours. I am hoping that, in time, I will get some control back over my life.

I am having a phone call from the pain clinic tomorrow to discuss how effective the nerve block on my shoulder was (not very) for unexplained pain after 2 surgeries both prior to diagnosis of FM. My GP says to tell them about the diagnosis and they will help.

Has anyone found hydrotherapy beneficial and how long did the sessions last for?

Has anyone had experience with the Pain Clinic and what can they offer and were they helpful?

I am hoping to be well enough in a year (or less)? to think about some sort of part time work. Is that feasible?

I appreciate we are all different. I tried acupuncture which brought back migraines that I hadn't suffered from in years. So unsuccessful for me but successful for others. Any replies greatly appreciated.

Thanks☺
scottydog
UKFM Member
 
Posts: 65
Joined: Tue Sep 23, 2014 11:46 am

referred to Persistent Pain Clinic Discharged from Chronic P

Postby scottydog » Tue Oct 28, 2014 12:44 pm

Hi all me again

I had the call with the Chronic Pain Clinic who have discharged me and said they will ask my GP to refer me to Persistent Pain Clinic in Eastney. They had no idea of waiting times.

Does anyone have experience with the Persistent Pain Team and what is the difference between persistent and chronic teams?

Guess I need to be more patient still!!

Ta muchly!
scottydog
UKFM Member
 
Posts: 65
Joined: Tue Sep 23, 2014 11:46 am

Re: No Fibro Specialist in Portsmouth

Postby scottydog » Fri Oct 31, 2014 12:38 pm

Oh well that's it. Pacing was a disaster I wish I hadn't tried. I am having a major set back. I can't do anything but lie in bed, sleep and cry because of the pain.

So all I did was TRY, one armed\handed because of shoulder pain, and do a little something and I am back to square one. So back to doing nothing and relying on my husband for absolutely everything! Normal cr##y service is resumed!
scottydog
UKFM Member
 
Posts: 65
Joined: Tue Sep 23, 2014 11:46 am

Re: No Fibro Specialist in Portsmouth

Postby FluppyPuffy » Fri Oct 31, 2014 3:14 pm

Don't give up on it scottydog. Try and have a look at what you did and where you think it might have started to go a bit pear~shaped. It's not unusual for us to think we can still do something like we used to do pre~FM, only for it to seriously bite us in the backside. At times I wish it would take a bit more from my backside with all the padding it has amassed, but that's probably more suited to a different thread :oops: :oops: :oops: :oops: :oops:

We have to go right back to doing things in baby~stepped sized segments, so even if it means doing something for a minute then resting, or doing things one at a time, such as washing one cup and then resting, then that is where you start from. Then once you know you're OK with doing that without too much discomfort, you look at adding another baby~step, such as washing 2 cups then resting, or adding 30 seconds on to what you are doing, then resting when you have done that.

I know it sounds very faffy and frustrating,in fact it is when you first start. As you start to find your groove tho, stuff starts locking in place and becoming your norm and you can find yourself very, very steadily and gently regaining some of what you may have thought was initially lost to you.

Give yourself time to regather and regroup after this false start. Reassess and then try again but with a slightly different approach. You may need to go thru a few false starts before you find the right groove for you, but when you do find it, it's one heck of a poke in the eye with a very sharp stick for that purple fibro~minion that has invaded your life.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: No Fibro Specialist in Portsmouth

Postby scottydog » Fri Nov 14, 2014 12:37 am

Thank you for your advice. From what you have said I was trying to do far too much! I did half an hour morning and afternoon. I haven't resumed pacing yet as I felt so poorly after. I am due to see a physiotherapist tomorrow and my GP has referred me to a Persistent Pain Clinic so hoping they will help.

I didn't realise that I needed to take such baby steps. I feel confident that if I start with just doing something small like you suggested I will be able to cope.

Sorry for the late reply but I was so "po'd" with life that I haven't been on the forum. I was feeling sorry for myself again. Now I will pull myself up by my bootstraps and try again!

Thank you and gentle hugs :bear-dancing:
scottydog
UKFM Member
 
Posts: 65
Joined: Tue Sep 23, 2014 11:46 am


Return to Doctors & Health Services

Who is online

Users browsing this forum: No registered users and 1 guest