How do I

[ellj]

Hi all, hope today is one of the less evil ones.

I am at my rope end, saw gp yesterday as I was discharged from Rheumatology dept because they referred me to Surgical.....Surgeon will not give me new knees so did as rheumy told me and asked gp to refer me back to him. Gp said waste of time so referred me to musculoskeletal physio team.

That will be another waste of time as I cannot exercise much at all....been to physio who told me unsuitable for land based physio so gave me five sessions in hydro pool which helped in general but you are only allowed five and no more

I feel that no one wants to help now....am on buckets of meds for pain etc but dont know who to turn to now.

I have FM, MS, Hashimotos thyroid disease, hypermobility, PA, diabetes type 2 , had TIA awhile back, angina. I know I sound like a hypochondriac but I am not....these illnesses have all been diagnosed properl and of course several are auto immune diseases so if you got one you are more likely to have another.

Sorry for rambling on, just feeling as if no one is listening to me in NHS anymore. Just giving me more pills.

I have had anti depressants but off atm .... of course I,m depressed sometimes because I have a lot of pain and daily living issues.

I can do little jobs for 10/15 minutes then get dizzy, nauseous and feel faint.

I overheat..common broblem in both FM & MS a hundred times worse than menopausal flushes.

For eg peeled about 6 apples to make a pudding...had to lay down with fan on full for about 45 mins till I could carry on. Thats how it goes.

I sound like a real moaner if I try to explain all this to gp or anyone.

Any ideas of what to do next would be truly welcomed, even if you think I should put up and shut up.....just be honest please. I need honest comments.

Thank you for reading this long strange post.

[Trikki]

I am sorry for all your troubles and feel for you. Have you ever been to Pain Management? You could ask your GP for a referral. I do understand your frustration with the Rheumy as mine also discharged me as there was nothing more he could do for me..he diagnosed Fibro and arthritis and prescribed meds for me....what more could he do? Have you sat and talked openly with your GP as to how you feel you have been pushed from here to there...do this gently and quietly and maybe he can help you sort out this problem....I do hope you have a good day today and I hope those apples where worth all the pain!! he he.....

[ellj in reply to Trikki]

I will try your suggestion about telling gp all this stuff but need to write it down because you know what its like...you go in with a good list of things to say then after saying one thing you suddenly find you are out the door again.

I actually had a written list but gp wasn't being going to listen after I asked for re-referral .

He was probably right , no point except if i.m not under consultant I cant get app with OT,s who make my splints and arrange my wax therapy. Oh well.

Thanks again.

[Hidden]

I have been told on countless occasions that my overheating is to do with menopause which I have taken issue with. It is horrible but has become a standard joke at home

It also isn't pleasant being pushed from pillar to post and feeling as nothing is being done. Just try to keep calm and take notes at each appointment. My daughter has problems with what was supposed to be flat feet, yet she always had a high arch we were shunted to this one and that one and told one thing and another and each specialist blamed the other so they all rolled into one. Finally she went to a podiatrist and he is actually sorting the problem! Our problem was trying to remember what each specialist said, so like I said write a brief note about each appointment, it may help with the next.

Good luck and I hope that you get something sorted to make you feel a little better soon

[ellj in reply to Hidden]

Thank you both for replies.

I am waaaaayyyy past menopause so certainly not responsible for my overheating problems.

Good idea to write notes after consultations thank you.

I

[Hidden]

Hi

I am sort of in the same boat. Need new knees and a hip. Vicious circle as over weight, med conditions contribute to this and been dieting under thou cals a day, little bit coming off but not enough. No surgery until slimmer, exercise difficult, so live with pain.

All you get at Drs is can't do it, not enough resources, money etc.

Like you don't know how to get the help.

Sorry, I do hope that you get some help in the future.

[ellj in reply to Hidden]

Hope you do too. I am also overweight and some meds add to that plus feel too ill to get healthy food ready etc much of time.

End up eating yogurts and bananas!

[hebden in reply to Hidden]

ITs a vicious circle isn't it Fibropop. Cant exercise so can't get rid of weight but weight needs to come off before they will give new knees to help you exercise and keep to healthy weight (or what they consider healthy). If they had done my left knee when I first injured it I wouldn't be the size I am now and my right knee probably wouldn't have been injured as well. The injuries caused osteoarthritis to set in and now I have no cartilage left at all and can just about walk a few steps where I used to walk everywhere and love cycling. It sucks!

[Hidden in reply to hebden]

It is , I'm trying to swim, but hardly make a length and my arms go so weak I can't get on, have to rest get about 4 to six done, pathetic. I used to do 30 to 50! I used to cycle too, can't anymore either.

I think they think we're fat and lazy and when we say we've always been active they don't believe us.

[Lou1062]

I cant offer useful advice, you are NOT moaning you have clearly come up against the brick wall. I can only hope you feel a little better soon xx

[rosewine]

You are not moaning sounds as though you are up the proverbial creek without a paddle. I had 6 sessions of hydrotherapy the max allowed in our area. The physio could see myself and another lady really progressing and he said if we could have weekly sessions for say 6 months he was sure he could make a vast improvement in our lives. He also said that half the week the very expensive hydrotherapy pool was empty and he was prepared to do more sessions. I think the NHS are so short sighted.

I overheat and I am past the menapause in fact had a hysterectomy at 32 so it has to be related to one of my conditions. I was like you yesterday decided to prepare a bit of rhubarb and freeze it so later on I could do a pie. Can't manage doing both the pastry and filling in one day. Like you I had to lie down for ages afterwards as the kitchen seemed to be swirling around.

I am concerned in a later post when you say that you will now have no access to an OT for splints and the wax treatment. I think that would be an excellent started starting point with your GP as sureky they can't refuse you that and that then might be a gateway back into other things. Do let us know how you are and how you get on.x

[Hidden]

Moan away our friend that's what we all do!! About the hydro- I had 6 sessions on the NHS and then I joined a self help group, yes you have to pay BUT after you,ve done it for a couple of months you will feel much better, 6 weeks is only a feeler and I think its cruel to get you into therapy that works only to be told you,ve had your wack! I go to local hospital out of hours where physios are just lifeguards, there,s no tuition just do it yourself, but you watch what others do and believe me they,ll give you their life story on therapy, ask your physio for a sheets of excercises and take them with you.. if your local hospital hasn,t got one ask about next town, I travel 7 miles to mine- then its a fitness centre which are expensive BUT very effective as the physios there look after sports people like footballers and cricketers- I,ve met some famous people.. The physio works me hard but I have lost weight with him too which is a real boost as I was "sprouting" a bit without therapy..

[hebden]

Not a strange post at all elli. All sounds so familiar to me. Dodgy knees that need replacing but keep getting discharged back to GP, Rheumy passing buck and discharging back to GP, Physio don't know what to do so send you to hydro for a few weeks then back to normal pain and stiffness. Anti depressants for what is actually frustration and anger not depression! Even pain clinic didn't know what to do so kept avoiding appointments by cancelling at the last minute and then discharging me for not attending!!!! Do a little of something like dust...lay down, sweep the floor........lay down, make a cuppa.... sit down and don't move until bedtime. It does seem no one want to be bothered and it makes you feel like you are always moaning. I never used to be like this I used to laugh a lot and make others laugh too. Now I just sit and cry and friends avoid me.

Sorry not much help but can send gentle hugs your way.

Joolz.x

[Steve49]

Hi.

Don't feel like a moaner you have got more too detail than others.

No defiantly "Don't" give up !!!

We all have to stand up & fight this horrible condition.

You are defiantly in the right place for people to listern.

I will also be here for you for any help/support.

Steve.

[ellj]

Every single ( and combined ) post has given me a real boost, thank you all for caring and for making the effort to reply .... you have all put me in a better place than I was yesterday.

I am making a few notes for when ever I see next medical practitioner so I can say what helps .. and what doesn't !

I will definitely try to find a place for hydrotherapy and as long as I can afford it will go. Sadly the hospital pool I was at don't do any private sessions as staff use the pool out of " normal " hours.

I will not be fobbed off with antidepressants, as you mentioned it is not depression it is frustration.

I have been in touch with my old OT who was brilliant and got me some wax therapy sessions by default ( he rushed in during a clinic and gotthe consultant to sign for my splints and had added the therapy on the form. Consultant couldn't be bother to read it so scribbled his signature and hey presto. I know that might sound sneaky to some but my OT thought it would be helpful and I desperatly need to get what help I can if only so my hands can still cope with the self catheters I have to use each day.

You are an amazing group and I will keep you posted.

Big thanks again to everyone

Ell

[peck]

ellj , I'm sorry to hear you have all these issues.I don't know what to advise as I'm in the US so not sure.I do wish you the best.Peck 🐤

[ellj in reply to peck]

Thank you for your good wishes

I have to say that I had fantastic medical help when I spent some time in Colorado and all specialists talked to each other or at least gave me all test results to convey to other medics so my treatment was much more helpful.

I hope you have good medics too.

Ell

[TheAuthor]

I am so genuinely sorry to read this my friend and I want to sincerely wish you all the best of luck.