Old Style Ways and Poor Health part 2.

pollyanna_26

Quick one Mar. I know you were talking to a young female Dr about the Fibro . Didn't she prescribe a suitable med for Fibro? I only know of the long time male GP you mentioned a while back.. Our GP put dd on one med but some time later changed her to Pregabalin after the previous med was withdrawn due to some issue with it.

I'm not sure if the female Dr is at your GP practice or the hospital but you should have been prescribed something suitable following daignosis.

pollyx

MingVase

No never got anything for it, female senior partner sent me to some Scottish Pain website when I moaned at her. Was full of silly pictures of happy people telling themselves how great they felt. Younger gp was going to refer me to a consultant but then left after a falling-out, I didn't know about it until just before we moved. Herbalist is good I think, there are 4 things in the medicine she gives me, all for fatigue and stamina. Ashwaganda is one, Gotu Kola is another one, and I forget the other two!

pollyanna_26

Well you may remember the fibro support group and even some parts of the original pain clinic we went to were a waste of time. It was mostly my pain's worse than yours types which wasn't helpful at all.

I'm not sure if there is a Health and Wellbeing service somewhere near you but the one here is great. Covers all sorts even Podiatry which as the hospital originally did provides tailored insoles for footwear. They really make a diffence if feet are painful. The physio is tailored to each individuals needs and there is access to someone to talk things through if you're feeling overwhelmed or overloooked.

I know you found some support from the Addisons group so I wonder if somewhere online in your area there may be some onine support from others with Fibro with a helpful rather than negative outlook. With various illness and MH struggles dd got to a point where she was helping other youngsters online after she'd managed to get to a better place than when we were fighting our way through various consultants , services etc which weren't helpful.

Someone local will know the ins and outs re fibro help in Borders and you may find them online. Just ignore the unhelpful and see if anyone can point you in the right direction. The right medication can make a difference. That is most important for you,, coping once you have that is easier . I read umpteen books on each condition dd was diagnosed with. Many were from the Oxford University Press and written by experts and those with the conditions in Canada, Australia and other countries. Much better than uk books.

I'll hunt them out when I have a bit of energy. The cold weather is giving the joints a bashing at the moment.

One way and another you've gone through the mill with your illnesses and lack of proper help. It isn't right Mar. The NHS is supposed to be there at the time of need and seems to have failed you.

They did well with the RV but you matter too.

pollyxx

pollyanna_26

I did a health and wellbeing service Borders search Mar. It appears it's mental health support only. Not physical health. in this area it's both physical and mentak health plus dentistry etc.

When you sign up with the local GP practice my advice would be to go in to your first appt and give some background to the GP . The Addisons, ME and the Fibro diagnosis . Be clear you are a carer for your husband and are struggling with your own health. Tell the Dr you cannot cope with the Fibro at all without a suitable medication to help.We never had a situation like yours with Superdoc but I found I needed to be very clear with consultants and others when something wasn't right. Just calm, polite but pointing out the medication is meant to help with fibro and you have been without any medication for it since the diagnosis. I used to say on the old thread "The Squeaky Wheel gets the Oil" and it's true . If the first attempt doesn't bring a prescription keep trying . They'll get fed up at some point and give you. No harm in showing you are upset and struggling but be clear you got the diagnosis without the help to manage it as much as possible. Fibro doesn't always calm down with a med but it does bring relief when there isn't a flare.

Sorry for todays typos!

Trying to psych myself up to get to bed. It's nice and warm down here but much cooler upstairs. I've checked the high tide times so when storm Bella heads this way I'm hoping we don't get the water coming over the rubbish defences here. Only been back online since Friday so don't fancy losing landline and internet.

pollyx

MingVase

Look after your wee self Polly, and don't go offline again -we miss you! I've found like you, that it's better to read up on stuff and DIY treatment is far better. I will see how it goes with the new GP when we get signed up but am not hopeful. In the meantime I enjoy the good spells and moan like hell through the bad ones xx

Shropshirelass

I'm afraid I'm a long time professional lurker here, as I have a lot of sympathy with posters. Not to go into too much detail, I have had mixed symptoms for almost 20 years, ignored by GPs. I thought I was a lead-swinger, imagining problems, etc. Thanks to WCS in part, I finally persuaded a new GP to refer me to rheumatologist 18 months ago, who immediately came up with Undifferentiated Connective Tissue disease.
This amounts to an autoimmune disease, identified by a collection of symptoms. Signs of inflammation In my blood tests had been ignored for years because not very high. In my case symptoms include joint and muscle pain, tiredness, dry eyes, mouth and skin, skin rash caused by sun, hair loss, cold hands and feet. Appears to be limited expert knowledge about UCTD, also know as Mixed Connective Tissue Disease, internet search shows interesting developments, though treatment in UK seems uninspired at GP level. My GP even told me the medication I'm taking was causing the symptoms, he was very disappointed to hear symptoms predated medication.
My plan has been to investigate for myself, and ask for treatment for the symptoms. Not much interest from GPs, but at least now I know I'm not crazy. I get very cross with myself over having to pace myself, there are so many things I want to do.
Is anyone finding change of diet is helpful? Cold, damp weather definitely bad news.

pollyanna_26

MingVase said:

Look after your wee self Polly, and don't go offline again -we miss you! I've found like you, that it's better to read up on stuff and DIY treatment is far better. I will see how it goes with the new GP when we get signed up but am not hopeful. In the meantime I enjoy the good spells and moan like hell through the bad ones xx

Mar I agree re reading up on stuff and some alternative remedies can help. We've done those things too. However hard it is and I do understand losing hope . There were some memorable times over the years when Superdoc and I did dds appts while she hid under the duvet at home. We've seen here so many times those who weren't being listened to by Drs , Consultants etc. 3Secondmemory and now Shropshire Lass.

It's hard to keep trying for the help you need but if you start that first appt with the new practice not feeling hopeful it will come across to the GP and if they are juggling too many patients you may get a negative response rather than effective medication and support.

If I lived near you I'd be glad to go with you but it isn't possible.

Remember the years you and your husband paid into the NHS and other things meant to offer support in many ways at the point of need. Get angry Mar ,don't show the anger but be firm . Write things down if it will help about the struggle with the fibro and hand it to the Dr. Superdoc has a little collection of dds writing over the years including a copy of the internet search that finally showed the Aspergers diagnosis was wrong and led to the proper diagnosis and treatment 20 years on.

You're worn down after all the battles but you are a strong woman . Don't let the mistreatment in the past deny you the help you need.

pollyx

pollyanna_26

Shropshirelass said:

I'm afraid I'm a long time professional lurker here, as I have a lot of sympathy with posters. Not to go into too much detail, I have had mixed symptoms for almost 20 years, ignored by GPs. I thought I was a lead-swinger, imagining problems, etc. Thanks to WCS in part, I finally persuaded a new GP to refer me to rheumatologist 18 months ago, who immediately came up with Undifferentiated Connective Tissue disease.
This amounts to an autoimmune disease, identified by a collection of symptoms. Signs of inflammation In my blood tests had been ignored for years because not very high. In my case symptoms include joint and muscle pain, tiredness, dry eyes, mouth and skin, skin rash caused by sun, hair loss, cold hands and feet. Appears to be limited expert knowledge about UCTD, also know as Mixed Connective Tissue Disease, internet search shows interesting developments, though treatment in UK seems uninspired at GP level. My GP even told me the medication I'm taking was causing the symptoms, he was very disappointed to hear symptoms predated medication.
My plan has been to investigate for myself, and ask for treatment for the symptoms. Not much interest from GPs, but at least now I know I'm not crazy. I get very cross with myself over having to pace myself, there are so many things I want to do.
Is anyone finding change of diet is helpful? Cold, damp weather definitely bad news.

I'm quoting posts today because the Fibro fog means I havr the memory of a gnat today. I knowyou describe yourself as a professional lurker Shropshirelass but I seem to remember you on the original thread. It's nice to see you here and heartwarming to hear WCS has helped in your search for a diagnosis and the confirmation you weren't crazy. I've picked her brains over the years and have appreciated her presence here and on the original thread.

It always saddens me so many people spend years feeling they are at fault when in fact it's the professionals not doing the job they're paid for that are the problem.

I've never heard of UCTD. Oddly all the symptoms you mention mirror those of myself and dd although I don't have the hair loss. It's a pity GPs seem rather uninspired or maybe lack knowledge on the subject.

I started the original thread with hints and tips on managing with poor health in day to day life . I intend to pick up on that as so many people offered realy good solutions to make housework , cooking etc easier. I think the pacing thing is a problem for many. We both try hard and have been for years but then we forget or get frustrated and regret doing so when payback comes.

I did a thing on weather and poor health flares. I started it on the original thread which is linked to this one. It was a study looking at weather and it's possible impact on certan conditions. A lot of people took part sending details of their weather each day. DD and I took part and the findings were certain weather conditions Cold and Damp and Hot and Humid did have an impact. That's what happens with us and many who posted here in the past.

A change of diet can be helpful . Poor Mar has needed to make changes for her husbands sake and in some ways for herself.

I tried various things .Avoiding the Nightshade family but some of the foods in that category are everyday staples. I didn't find excluding them made a difference but some people did. I find ginger,garlic etc help . I'm mainly a cook from scratch person and to the amusement of many have never ordered a takeaway in my life!

I wonder how all those on the original thread and the early part of this one are. So many different people with different lives. I send my thoughts to them in these strange and worrying times .

pollyx

Shropshirelass

Pollyanna and all: I'm a long time lurker, because I don't always have time to read, or reply to posts that are relevant to me, can't always keep up with the threads I'm trying to follow. I'm like Mar, my DH has issues with his mobility, housekeeping and our various health related appointments keep me busy. Often wonder what it would be like to need to plan for exercise!!!
I'm a massive fan of ginger, too, make tea just hot water and (baking) ginger powder sometimes. I think eating less red meat helps.
I will take time to read the old thread, and think I might take notes to help keep the old brain on track.

pollyanna_26

Don't worry Shropshirelass. There are quite a few here who have family members to care for while trying to keep functioning ourselves.

I started the original thread because there wasn't anywhere on OS to post without taking a thread off topic. There is lots of useful stuff on the original thread. I find I'm often so caught up in my youngests up and downs I forget simple things. I've been wondering over the last few months why I'm in a lot more pain and having quite a few sleepless nights. I've been putting it down to all the changes and challenges during this year. It struck me an hour or so ago I've forgotten to replace the Arthritis gloves this year. I wear them typing, sleeping and when needed sometimes under rubber gloves. My joints are a lot more swollen and distorted now which caused the gloves to tear at the thumb area. So the next size needed and hopefully less pain and better sleep.

Take care

pollyx