My sons Fybromyalgia

I have had fybro for over 20 years also have osteoarthritis in my hands, knees and hips and mental health problems not related to the fybro although as usual the dr's always link it. Two of my sons have fybro one is 23 the other 24 which started with knee problems which is the same way i began at the age of 14 but was told it was growing pains!! recently though my younger sons lower leg is three times the size to what it is usually solid with fluid he had been told he needed surgery on the knee which now can't be done until the swelling has gone. He sees a rheumatologist privately who recognises fybro and is brilliant and very understanding but he sees this guy in Bournemouth but now lives in Leicester his gp up there said he had a DVT for which he was given warfarin injections but the swelling is still there and the gp doesn't have a clue now to what it is he has tried antibiotics as he thought there may be an infection but nothing changed. He wen to the pain clinic this week and saw a chinese Dr there whose only answer was that it was in his head and to do exercise (which he has tried and it has made things worse) this pain DR was absolutely useless he has mentioned having a lignocaine drip but said he could only have it once and he didn't think it would work he asked him if he was working and when he said yes he was he was surprised as if to say he was a malingerer. His gp has told him to use his crutches and advised him to get a wheelchair which he did now this dr says the opposite. He saw the rheumatologist the next day in Bournemouth and he gave him a steroid injection into the knee although because of the fluid it was difficult. He told him under no circumstances to exercise and to keep the crutches but not to put weight on the leg but to exercise the foot to keep the circulation going. I know my son cries in the night with the pain as his girlfriend has told me so he is on a high dose of pain relief the same as me but how are you supposed to deal with these things when you have dr's who believe there is no such thing as fybro as the pain clinic dr said fybro is something they tell you you have if they have no other explanation for it. The rheumatologist was furious when he was told this. How can someone in a pain clinic treat you for something that he doesn't think exists anyway!!!!!!

3 Replies

  • I had the same thing happen at my pain clinic in useless Dr not the same complaint ..... went back to my GP who immediately referred me back to the pain clinic under a different DR who was absolutely brilliant and got me the treatment I needed hope that my be of some help

    VG x

  • Thanks very-grumpy I used to be a private patient under my ex husbands cover but am now NHS i had a knee replacement privately which is useless but the same dr will not re do it on NHS or do the other knee as they say i am too young if i was private i know it would be done! I went to the pain clinic and saw the same Dr that i saw privately he looked at me and said don't i know you as soon as i mentioned i had seen him privately he brushed me off and didn't want to know and said i needed to go to the pain clinic but i had been referred to him by my consultant as the pain clinic and had waited 3 months for the appointment. I have been told my osteo has got worse but can get nothing done about it my knees drop me at the slightest thing. I hate to see my son going down this same route my daughter has hip problems and has been told it could be fybro. My GP even asked me at my last check up how my mental health was. If you don't sleep how can your mental health be great if you are constantly in pain how can it be great. I worry that my son will lose his leg if they don't find the problem soon at least the rheumatologist is doing things he has taken blood tests from him and has another idea as well when these blood tests come back so at least i know he is being looked after from one corner his gp sounds quite good as well it was just the guy at the pain clinic. Thank you for your reply sorry if i vented a bit there. Had a rough year with my fybro can't get it back under control and living in a ground floor flat with a 3 year old living above and with no soundproofing the child is up at 5.30 jumping on my bedroom ceiling and if i am in my lounge then i have the washing machine above me and table and chairs being dragged across the floor its driving me crazy I am freezing cold but can't afford the heating on as just had an enormous gas bill of £118 for 6 weeks and i only have it on for 2 hours in the afternoon. The landlady is the one who lives above me so not a lot i can do have had a word with her and she says she has done her best. jackie x

  • Please don't apologise. That's what the forum is here for to have a vent when needed, I am glad your son has a good GP and rheumatologist, I was lucky there was more than one dr at my pain clinic so I got re referred back to a better dr , could your sons GP refer him back under the fast track scheme so he gets seen sooner.... How do I know about the fast track scheme ... Totally by accident . On Saturday I got a letter from my local hospital saying I has been fast tracked through to see a podiatrist... Sounds great except that appt was for someone else they had my name but I don't see podiatry I see orthotics I phoned and explained and they said oh that letter should had gone to someone else...... But it was NHS

    Not private so they can see people quickly....

    VG x

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