Lost Weight & Feel Worse

[Mrsdoozer]

Hi Fellow Lupies

I am and a a total loss and so frustrated with everything having done all that my G.P. and Consultant have suggested :-[

I was diagnosed with Lupus , Sjogrens, Raynauds and lots of the associated problems that goes with these awful things in 1999. I am on the  usual concoction of meds Hydroxy, Prednisolone,Amitriptyline, Statin ,Salagen,Aspirin,Co Codamol , Ibubrufen to name a few. For many years i have also suffered with lower back pain that has been constant and at times horrendous to the point i struggle to walk ,sit ,or even just move. I was finally diagnosed with Spondylolisthesis, degenerative wear and tear in my spine area L5 in 2014. I was advised by both my consultant and G.P. to lose weight and undergo Physiotherapy. Well long story short I joined Slimming World and lost 2 stone! I totally recommend Slimming World i lost the weight easily and sensibly and yet could eat and never be hungry ! I have been doing my physio exercises faithfully & lost the weight . So why having done all that i can to help myself why do I feel so much worse ??! The constant aching and stiffness throughout my body has increased & my back pain is considerably worse.It is lovely to be able to wear fitted clothes in sizes 12/14 rather than hiding behind baggy jumpers etc. The compliments are lovely to, but i feel worse than i did when i was considerably heavier. It is bad enough as us Lupies  know,  when people say you look so well  you don't look ill.  Now it's" oh you look so slim and  well, you must feel fantastic having lost weight & it must help the Lupus !!!!" I When inside I feel so ill  and hurt all over!!Trying to explain makes me sound like  a whinger so i just smile and say thank you when all i want is for the aches pains and problems to stop. I work part time but am struggling to walk, bend, or just plain move with this back & joint pain let alone work . But being self employed no work, no money . Painkillers take the edge off the flu like symptoms of the lupus and Sjogren's but doesn't touch the back  pain. I'm not feeling sorry for myself far from it. I am just frustrated and disappointed that by trying to help myself and do what i was told I simply  have made the situation worse. Sorry for the rant x But people who do not struggle with this awful disease do not understand and i just needed to talk to people who do.Im so grateful to be  a member of the Lupus Health Unlocked community and to be able to talk to people who do really understand. Onwards & Upwards the wolf shall not win......now where did i hide that chocolate from myself  a few months ago ;-} i need a little treat!!!  Love & Light to you all xxx

[PMRpro]

"The constant aching and stiffness throughout my body has increased & my back pain is considerably worse"

Is the rheumatologist confident he's identified ALL the possible autoimmune disorders you might have? That statement of yours could have be written on my "home forum" - polmyalgia rheumatica. You mention pred - what dose? And if it is ever higher - is the pain better?

[Mrsdoozer in reply to PMRpro]

Hi thanks to getting back to me, to be honest i wasnt sure which forum to post on as everything seems to be linked together and i cant see the wood for the trees . Every time i see my consultant i am told that my bloods are in the normal range so leave everything as it is as the meds are holding stable. If i see my GP in between hospital  appointments because i ache and feel so rotten they just say i need to see my consultant but getting an appointment means waiting weeks or months, in the mean time i struggle to get about and go to work. Many years ago when i was in my 20s my then GP told me that a blood test had shown up Rheumatoid Arthritis in my blood , but no one has mentioned it since and when i brought the subject up it got dismissed . All my Aunts including my mother have underactive thyroid i have been tested and it comes back borderline again this was dismissed when i saw it mentioned on the GP screen . I do wonder if I have other other Autoimmune problems maybe Hashimoto's due to the family thyroid problem, but as a lot of other members on here say the questions are dismissed or ignored by the powers that be and you end up feeling stupid or a time waster. Maybe its because I am premenopausal its got worse but it seems to have all happened around the weight loss and has got steadily worse. My holding dose of pred is 5 but it reluctantly gets put up to 20 for a week (it was considerably higher and a lot longer when first diagnosed) if i am having a tough time just as i start to feel better its dropped back . I have had the injection in the past when i saw a different consultant and it worked quite well for a while.But as i have been on steroids etc since1999 they are keen to drop them back down asap As for the back who knows maybe the lack support from the fat has made it worse.Either way doesn't make me a happy bunny or much fun to be around at the moment , my poor family!!

[PMRpro in reply to Mrsdoozer]

The GP who told you your blood tests "showed RA" obviously isn't too well up on RA. There is a substance called rheumatoid factor and you are either positive (it's present) or negative (it's not) but it doesn't mean you have RA. There are perfectly healthy people who are RF positive, people with severe RA who are negative. It's just part of a bigger picture.

So when you are on 20mg pred for a week you feel better - but it all comes back as soon as you stop? Or an injection helped for a while? And are you sure that the weight loss was all WW? It is a symptom of many autoimmune illnesses, including PMR, and PMR can appear without the ESR/CRP levels being raised - especially when you are on a low dose of pred. 

You are stuck with the doctors you have - but if your current rheumy isn't helpful I think a second opinion would be an idea - you need a doctor who treats the patient and their symptoms and not the numbers that came back from the lab. I know a couple - but unless you are fairly close that doesn't help!

[puffyface in reply to Mrsdoozer]

When they say your thyroid tests were borderline, what did they mean? Do you have a copy of the results? I just wonder whether that might be an issue, especially as you say you have been struggling with weight. Thyroid issues can cause real problems...not least because most GPs only look at tsh levels rather than looking at what's really going on. I have sjorgrens, lupus and raynauds but also have hashi's and although it's very hard to know what's causing what pain/fatigue...I suspect that my lupus is quite mild and actually its the thyroid causing me a lot of the daily grief! It's really hard to tell. Endocrinologists definitely pass you over to rheumy's and it feels like there are too many people involved and nobody knows what is causing what and how to help. 

I feel for you so much. It's really horrible feeling so awful and not knowing what will help. Can you go back to your GP, perhaps with a family member and ask for a full thyroid test (with antibodies) to be done? If they do that, then you'll know either way. If you have issues, perhaps some thyroid hormone will help, if you don't, then you can rule it out. If they won't help, I would be going to find a second opinion.

Really good luck. x

[ruthgriffith in reply to Mrsdoozer]

ra     is    a disease caused  by inflamation  it comes from  to   much    acid  in your  body   , once  your  body   has   alot of    acid   build  up  then  you  swell up  and that swelling then  presses   on the  nerves  and thats when you get  numb or    pain 

[PMRpro in reply to ruthgriffith]

Aminoacids are the building blocks of proteins - they aren't "acids" in that sense. There is a link between aminoacids and RA in that certain sequences of aminoacids are found in some patients and not in others. But it isn't a case "acid build up".

[ruthgriffith in reply to PMRpro]

yes i do know that amino  acid is  the  building blocks of  proteins     did i write amino acids   ill correct that thanks   ment to say   acid  build up    

[PMRpro in reply to ruthgriffith]

Not sure "acid build up" can be blamed for RA either. It is an autoimmune disorder that causes the immune system to attack the joint tissues. No-one knows what causes the malfunction of the immune system - but there are likely to be a whole range of causes and RA probably comes in several different varieties which is why one drug works for one person but not for another. However, none of them really change anything to do with "acid". Though I'm sure there are websites that tell you eating an alkaline diet will cure your RA - except that isn't how the body works.

[ruthgriffith in reply to PMRpro]

no     acid      build up can be  blamed  for   ra   and   osteo     problems , studies were done   at the  mayo clinic to confirm the actions , yes it    is an  autoimmune  disease   and yes it does attack  itself   , but studies    connected the dots   to acid   build up  an   85 percent  of the  cases  the  patients had   acid  build up .  

[PMRpro in reply to ruthgriffith]

Are you thinking of the Mayo studies that showed that RA patients can also get gout? And that "RA flares" may have been gout in some cases?

sciencedaily.com/releases/2...

But that's a different matter - uric acid doesn't cause RA. it causes gout.

[ruthgriffith in reply to PMRpro]

no that is  not what i read    and   yes  uric acid  is  different   ill see if i wrote that      down   to send to you but i    tread     everything    from   books  ,    medical books   tp   natural     paths    but ill see if i can  locate it  again 

[ruthgriffith in reply to PMRpro]

arnica   is a natural pain    reliever  with no side  effects

[Paul_Howard Partner LUPUS UK in reply to ruthgriffith]

Please do not advise people to take alternative/complementary therapies without providing full, balanced information. Lupus is a varied condition that affects everybody different and what works for one person could potentially be harmful for another.

Your information about arnica is incorrect. Amounts that are larger than the amount found in food are likely to be unsafe when taken by mouth. In fact, arnica is considered poisonous and has caused death. When taken by mouth it can also cause irritation of the mouth and throat, stomach pain, vomiting, diarrhea, skin rashes, shortness of breath, a fast heartbeat, an increase in blood pressure, heart damage, organ failure, increased bleeding, coma, and death.

Do not apply arnica to damaged or broken skin. Too much could be absorbed. 

Arnica is often listed as an ingredient in homeopathic products; however, these products are usually so dilute that they contain little or no detectable amount of arnica.

You should not ingest arnica or apply it to the skin if you are pregnant or breastfeeding as it is likely to be unsafe,

[littleeffie]

Hello again,

I agree with a lot of what PMR has said.

Weight loss you have worked for and feel uplifted by is great but it can also be a sign of other things going on.

Apart from feeling that I wish I had a magic wand to make you painless I also wondered if

1 you have a rheumatolgy helpline ,normally run by nurses,who you could call for advice

2 if possibly any foods you have been having on your suggested diet are possibly new to you or in different size portions that may be having an inflammatory reaction as many auto immune sufferers find certain foods affect them

3 could you not write ,bullet point format,the way you are struggling ,what you have tried and achieved and how you feel you need more/New input on help with back pain etc then hand it in at your gp reception requesting that your doctor reads thus then sees you or gives you a phone consultation to discuss a help plan.

If I was a bit more me at the moment I might think of more ideas but you could think about mine andPMR advice and see what can be done.

You can look into any and as many forums as you like on hu but you are more than welcome and among friends here xx

[Mrsdoozer in reply to littleeffie]

Hi 

Thank you both for your kind words and thoughts. The weight loss is something i have worked at and been controlling carefully , but you have a very valid point i did not think about. I am now eating different herbs spices and foods  maybe there is a link to what i have been eating i will keep a watchful eye . writing to my GP is a good idea although everything he ever says is to do with my weight in his eyes or lupus and refers me back to the consultant. GP omitted to see on my notes that i was already taking amitriptyline and was going to give me a prescription for it, when i pointed out I was already taking it and it was on repeat he just said sorry i only glanced at your notes didnt see it! not very confidence inspiring although he did congratulate me on the weight loss lol Im seriously considering changing my gp and practice. when i told him i felt so poorly and explained his explanation was" you will its like giving up smoking you feel awful before you reap the benefits and feel better" hmmm still waiting for that eureka moment. Once again thank you both for your help and advice i do appreciate it. xxx  

[ruthgriffith in reply to Mrsdoozer]

since you do herbs   look up  the  best herbs for every organ  and    it will help you    see herbs  heal   they  take longer to heal us  but they heal    not  just treat a   symptom . the drs today do not  look at  a whole  person they look at one thing at a time , 

[ruthgriffith]

statin    drugs causes   damages  to your  body  ,    any  kind of asprin  products   damages your liver  

[Paul_Howard Partner LUPUS UK in reply to ruthgriffith]

Hi Ruth,

Whilst some people may experience side effects some of these treatments, the risk of these is well considered against the benefit they can have when a consultant is prescribing them. These can potentially be life saving treatments.

[Mrsdoozer]

Hi Everyone ,

Thank you all so much for your kind and helpful words .It makes me feel so much better that I am not alone battling this problem. The silly thing is when i had my eldest daughter my then GP who was so sweet and understanding put me on a small amount of  thyroxine as a trial due to borderline results . I had a couple of miscarriages before i had her and it was before i knew anything of lupus. The thyroxine made me feel alot better and i lost weight but then the dreaded aches, rashes , stiffness happened . When I was diagnosed with SLE the consultant took me off the thyroxine saying he thought the lupus was the problem not the thyroid. That was years ago now as it stands they test comes back borderline each time and the doc say to leave well alone, & consultant is not concerned about it so i kind of hit a brick wall. I was considering paying privately for a second opinion but struggling to work part time may make it difficult to buy meds privately x I will go back to docs and try get an appt and see what happens xx

 

[AnnNY]

In my experience weight doesn't really make a huge among of difference in how you feel with lupus. I used to loose a lot of weight with flares, so when I was at my most skinny I felt the worse. When I gained a few pounds it meant I felt better. A few years ago I was given gabapentin and I gained a lot from that. I stopped taking it and am having a hard time loosing the weight. My point is that being thin doesn't mean you won't flare up. I suppose it may help you get around, although I have been at a lot of different weights and don't really see a connection, except inversely. I also was borderline with my thyroid and convince an endo to give my synthroid. It has helped a bit with fatigue, brain fog, and also a low pulse and palpitations.