what to do next?

[sarahannsmith_1984]

hi im new to this site and some of disabilities or symptoms i have dont appear when put into your profile on this site. i have only recently been properly diagnosed by the rhumatologist despite having since birth. drs have never seemed to have listened or just put me on the simple stuff ibroprophen which they got records from previous drs i have been to showing how many times i have been there to say they are not eoking. its always felt they just wanted to get me over and done with and on to there next patient. only with the help of my kids health visitor did i get anywhere, im currently on amitriptyline 25mg and buscopan for ibs. plus i have epsom salts in my bath and have tried vitiamins which dont seem to make any difference. fbeen to physio in the past but was more in pain than it doing any good plus the lady was always treating me like a child,being disability discrminative and she actually even caused me to bruise. i cant walk long or short distances with out being in pain, swelling or being short of breath. i do have insoles in my shoes given by the orthopedicts by dont seem to make any difference with my walking. Any advice?

[DanielleGemma]

Hey Hun,

So sorry to hear how badly you are suffering! I know it is the most awful thing when it isn't going well and you are in a flare! Have you tried a TENs machine or magnesium spray? Both were recommended to me by other users and they have been an absolute Godsend! I hated physio as well I felt that it made me feel worse that better, but I do try and do a couple of gentle walks that really helps me - I suffer at first but push through that and I do feel a lot better xxxxx

[sarahannsmith_1984 in reply to DanielleGemma]

tried the magnesium but no effect. do the design tens for legs or just for backs. i have agrophobia and anxtiety so dont go out much but thanks for the help xxxx

[DanielleGemma in reply to sarahannsmith_1984]

The TENs is designed for both, I have the St John's Ambulance one it's really small and purple haha and it really helps! Right okay, have you got any gentle exercises that you can do at home maybe? xxx

[sarahannsmith_1984 in reply to DanielleGemma]

i have tried to but its just so painful i am going to try going swimming more regiular now that the place near us has been refurbished

[DanielleGemma in reply to sarahannsmith_1984]

Ah I found a couple of settings were too hard but there were a couple that worked quite well! I went swimming with a float so I only had to move my legs which really helped xxx

[sarahannsmith_1984 in reply to DanielleGemma]

i ment the gentle excersis hun lol gonna try the tens soon

[DanielleGemma in reply to sarahannsmith_1984]

Oh haha!! Sorry! xxx

[rosewine]

Just like to say welcome. You do need to have a physio who has a but of an understanding about fibro. I asked to be referred as I could feel my body slowly string to stiffen up (I had been very active before and hated the feeling). Initially I felt worse and realised the pain escalated when I did certain of the prescribed moves. I mentioned this to him so he said just to do the movements I felt see helping. I also asked him to watch me do the moves so he could ensure I was doing them correctly. Don't know whether your physio did any massage as I found that a complete no no. I still do the exercises and have found I have far more flexibility and my walking capacity most days has gone up ten fold.

I am not sure what meds you are on now but I found that Pregablin (Lyrica) has certainly helped reduce the burning, shooting pains.

Have you ever had acupuncture. I use some of my PIP money for a monthly session with a Chinese medicine/acupuncturist expert and it has really helped. He understands a d is extremely knowledgeable about fibro and has helped with dietary advice as well. He tailors the treatment to whatever is causing me the most problems at the time.

Have you asked for a referral to Pain Management as that can help. My friend is being opened a Tens machine by them to help with her debilitating back and hip pain which is affecting her walking.

Hope some of this helps. Look forward to your future posts.x

[sarahannsmith_1984 in reply to rosewine]

no i could ask that next time i go to the drs. dont go out much as have agrophobia and anxiety. no she didnt try any massage she just wanted to see how far i could make my legs go wether i was doing the excersis properly and cuz i wasnt doing one properly she pushed my knee right back and said there u go u can get it back that far and later whern i got home i realized she had caused a bruise. never tried acupnture hun

[rosewine in reply to sarahannsmith_1984]

My friend had that sort of experience with a physio. Pushed her body into a position that caused her so much pain that she didn't recover for days. I know they say no pain no gain and we expect to be sore as we perhaps haven't used s muscle fully for ages but it shouldn't leave us so bad that we are in more pain than before.x