What help is out there

All your fibromyalgia experiences, questions and answers.

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What help is out there

Postby reb1981 » Thu Nov 03, 2016 9:37 am

I have fibro and Bipolar. I am getting help for the bipolar but nothing for the fibro. I take 900mg Gabapentin, co-codamol and naproxen when required, amongst other meds for the Bipolar. I work 35 hours per week in a office. I try to go to the gym twice a week for about half an hour each time.
My hands, fingers and wrists hurt, My shoulders and neck hurt, I get cramps all over my body, I am tired, I am putting on weight, I am very stiff over most of my body, I can be moody, I can't walk far or for very long. I feel like giving up work and just sitting on the settee or laying down most of the time. My doctors had a leaflet for self referral to the physio so I gave it a go. She massaged my neck and shoulders as they were unbelievably tense she said, I was a bloody cripple for nearly two weeks, I was in so much pain. The second time I went she said 'I am sorry for hurting you I had to try it and you obviously don't react well to massage or being touched but I'm sorry I am going to have to discharge you there is nothing more I an do. Fibromyalgia is one of those things we don't understand and you have to figure out for yourself what you can and can't do'. What now, were do I go from here ? Does any one have any advice please ?
reb1981
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Re: What help is out there

Postby *Lisa* » Thu Nov 03, 2016 2:19 pm

Hi,

First off i have been having physio for 15yrs. Many fibro's cannot be touched but also depends on your physio. I have worked up a relationship with mine I first saw her on NHS and YES there policy is if they cannot cure you/help then they discharge you so i had to go private. Luckily physio works private too so i pay for her to visit and she gives me trigger point therapy BUT this took many years of trial and error before we worked out what my body responded to and YES i suffer during and afterwards. I tho have decided that going through such pain eventualy benefits me but for it to benefit you, you would need regular physio (for life) to maintain stiffness. This in itself takes a long long time to achieve.

I have refrained from physio for 2 months as i wanted to show a Rhumi how bad the stiffness get as physio is not a cure is a short maintenace from being completely immobile. I am due physio next week after waiting all this time and i can barely walk. My breathing is all tight and constant migrains from neck stiffness and so forth....

You will react from your first physio session. The key also lies in the fact that the physio needs to treat all of the body not one area cause if they treat one area then the stiffness will sit in another causing more problems. On NHS they do not have the time to treat all of the body.

Also before physio i take diazapam so my muscles are a little relaxed so the physio is able to get into those muscle more easily. Then its taking pain killers and resting 24 hours after. Drink lots of water also to flush the toxins out as a side-effect of physio is not only soreness and pain but feeling ill like flu like symptoms.

After having such physio you need to rest up 24hours with no exertation at all as this can make things worse.

Trouble is there is no info on the above. This is my 15 years of experience.

I do tho fully understand that many people not matter what just cannot tolerate hand on therapy. It hurts!! it kills!! but i somehow have over the years managed to focus my mind to cope with the session although i do many time acidently :swear1: a few times :lol: :lol:

Now you can always ask your GP to be referred to a pain clinic if your GP doesnt know what other course of action to take. I tho with my experience would stick with your GP as there treating your mental health and thus being with treat the 2 together getting better results where as the pain clinic may focus more on the pain and may not take much concideration to the bio-polar.

Another thing GP can do is reffer you to CBT therapy so you can work on mind and body.

Then there is the Rhuematologist they can also help with the pain.
As a Public Moderator & Admin 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...Lisa
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