I am new herešI have every symptom of RA but in saying that I moved home around 20yrs ago which meant a different health authority. Prior to moving which wasnāt a planned event my Doctor was insistent I had a Thyroid problem but being in my mid to late 20ās & a high demand life I had little concern. Since Iāve been under current health authority when Iāve had blood tests done Iāve been told my Thyroid is fine.
I have every symptom of RA & have had now for around 15yrās I accepted the āItās your age & hormoneāsā as the cause of this unbearable flushes of sweat & temperature fluctuation along with dizziness & blurred vision at the same time.
Iāve become a recluse, getting up to go to the toilet while drenched in sweat from the upper centre of my chest to the tip of my head with fingers & hands throbbing & dizzy, the last thing I feel I can do is any activity, I canāt even get my trousers on due to sweat.
I have become a tv addict a hoarder from someone who was so house proud. I hide from the world I sometimes feel if this is my future I donāt want one. I couldnāt have a partner, I feel so dirty! I am isolated & donāt have anyone to help being Iāve always been independent.
I am hoping this site can offer me advice & hopefully meet other people in my situation as I canāt bring myself to tell my friendās, all who know me as the life & soul! All I am now is apathetic & angry with my own body & getting no help!
Ive been diagnosed around 15yrs ago with āone disk problemā due too Osteoporosis. I had a full blood test this year & apparently all is good except my Erythrocyte levels, the receptionist told me when ordering my medication, when I saw the Doctor he said my blood is fine. I have Ganglions on the back of my hands, on top of my feet & mouth. I have to lean supported by the sink my spine & muscles are so sore & weak just brushing my teeth. I stopped smoking over a year ago, I drink water constantly as I have a dry mouth. If Iām not thinking about all I need to do Iām sleeping to escape my filthy existence due to these immense sweat flushes, Iāve given up regarding the battle because I canāt understand or control these sweats, I can have freezing feet while dripping in sweat!? I feel disgusting, I have no energy & my arms feel like lead weightās even when I feel I can bathe. I have two pets I love dearly who are also suffering because of this horrible situation.
Diagnosisā Iāve had in last 5yrs, Tendinitis ,Osteoporosis ,Fybromialgia ,Calcification & Erythrocyte level but unsure what as the Receptionist read it out for me.
I have to take a taxi everywhere & I feel so embarrassed as I cannot control the sweating.
I could cope with the pain but not this exhaustion, sweating, isolation ,depression.
Any advice or support would be much appreciated, thank you for reading. I hope you feel better than I do šš
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Anon103
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Sorry to hear of your struggle n sadness.All that you have written here you must tell your doctor.They are the professionals and should offer you the right help.Sometimes you have to be assertive with the doctors.I find they donāt tell you whatās wrong but ask you what you think it is or what would you like them to do.so annoying.Say you want to see a specialist
First of get a refferal to see a rheumatologist and get some treatment for your RA/fibro WHen you get that in place you will stard to feel a lot better darling. Then start doing a little bit of walking. Also see about getting some couselling as well as i think you need that too. Ra can be controlled, as to the sweats i still get them 20yrs on, i don't get them all the time, but the a good spell i get them. Now i am not going to pamper you i will support you. You need to say to yourself you are worth more than this, so get pro-active with your diseases. You are ill darling, but how you deal with it will determine how you cope with it darling. Now i am going to send you some healing hugs and wish you well in your fight as it is a fight darling. xxxx
Agree with you. Agree some counselling just to say how you feel to an expert would be good. All these physical symptoms and worry will take their toll on a person especially if on their own. xx
I agree with Fran2-57, you absolutely have to see a doctor then you probably need to see a specialist to find out what is going on because your life is pretty miserable at the moment.
You could print out what you have written here and give it to your doctors when you see them.
Donāt take āeverything is okā or āyour results are fineā - whenever I hear that said I think āyes, but fine for who? You, your receptionist or the receptionists dog?ā So donāt take āfineā as an answer because everything is clearly not ok for you and you need help.
Ask the receptionist for a print out of your results to see what they have actually tested. Then look to see where you are within the ranges they show for the test results. Doctors say any result within those ranges are ok but the ranges are mostly huge so itās quite possible to be within the range and feel dreadful. How are your iron, vitamin D and B12 levels for example?
Could the sweating be caused by a thyroid problem? An overactive thyroid could cause the sweating and exhaustion although saying that when I was being treated for Graves when I needed an increase in levothyroxine I used to get those hyper symptoms to - when my thyroid was actually under active.
How bad are your bones? I had Gravesā disease which was an overactive thyroid with antibodies - I also have inflammatory arthritis and osteoporosis - unfortunately the thyroid and arthritis plus a family history led to the osteoporosis but Iāve found I have to keep moving (gently ) or else my body feels a lot worse.
So see your doctor and ask to be referred to a specialist - endocrinologists deal with bones and thyroid - I think some people with osteoporosis see endocrinologists for but at my hospital itās a rheumatologist I see for my bones and arthritis, so you need to see someone to find out why you feel so bad. I know itās probably difficult for you to fight back because you sound very low but you say you donāt want to feel like you do forever and youāre the person whoāll have to do it.
Keep a diary, write everything down and keep all your results for future reference and good luck with it all. Keep going until you find a decent doctor who will listen to you.
Your definitely no fruit & nutcase šthank you so much for your wisdom. Iāve thought in the past about the reason Iām as good as ignored & I believe itās the fact I might have a couple of undiagnosed issueās. Iāve had a herniated area in my groin since I gave birth when they broke my waters & it was being investigated by my last health authority but this one wrote on my files ādelusionalā after a solicitor read notes while I was in hospital in 2015 for stress! Stress caused by pain & being ignored. The Psychiatrist realised I was just someone with a hyper brain & had no need to be in the hospital even though they put me on Olanzepine which I stopped as soon as I got home. I donāt know whether I should be concerned about these Erythrocyte situation, which I wouldnāt have known were out of range had it not been for the receptionist as when I saw the Doctor afterwards he said Iād had full blood tests & all was fine except for Vit D I think, I feel Iām being robbed off totally whether itās with a smile or not itās my health & quality of life. As youāve said āwhat rangeā as I got blood taken private years ago & the horrible Doctor at the time as good as threw the results back at me & had no interest.
My bones dislocate & I know my shoulder bones & fingers break or with slight pressure could.
I am so grateful to you & everyone who has replied to me with advice & support, so much I need to reply in stints as Iām always behind with everything I need to do.
Again thank you so much for your valuable advice & understanding. You take care š„°šš
Do you have anyone you could take to support you when you finally get to see a doctor? From what Iāve read on here doctors are much more careful as to how they treat you if you have someone with you.
Iām appalled that anyone could write ādelusionalā on your notes, unfortunately having read a lot of similar comments made by other people on various HU sites Iām not surprised - just shocked.
If you want private blood tests try Medichecks - a lot of people who use ThyroidUK use their services, I use their home finger prick tests regularly to see what is happening with my thyroid, my vitamins and I also use their HbA1c to keep in top of my blood sugar levels.
As for stress, I always think thereās a huge difference between being ādepressedā and just finding it depressing that doctors wonāt listen to you or take you seriously. The two are quite different.
You order the tests you want - they often have offers on Thursday (Thyroid Thursdays they call them) you get a kit through the post the next day, everything you need plus detailed instructions on how to do the test, you post it back to them and the results come into your inbox a couple of days later.
They are an accredited lab. Sometimes the lab ranges are different ti the NHS ones but I look at where I am within the range on both and it is always the same.
You can have a report on the results if you want. I donāt bother now because I know what I need them to be. They are all colour coded anyway - green is good, a red dot beside them means something is too high or possibly too low. Itās very easy and you definitely donāt have anyone passing unwanted opinions on you. I donāt think GPs are all that keen on accepting the results - well they didnāt authorise them did they! But it lets you know how things are.
Iām sorry you are having such a hard time with it all. Often dealing with doctors just isnāt easy? So best wishes to you, hopefully you can get things sorted out soon.
You have good advice from previous replies. You donāt mention friends and family- perhaps someone could go with you to a GP and get an idea of what your diagnosis is - and printouts of blood results etc. Self diagnosis can be mistaken and may mask the real problem - and disable doctors from assessing the whole picture
I donāt really have anyone where I live but have paid someone to come with me & it made a difference because I knew a Dexa scan wouldnāt show the damage to my shoulders, wrists & elbows, only the density & I was as good as begging them for an X-Ray as I thought when they see the damage I know is there they will help. The Doctor agreed to give me an X-Ray of my shoulders & wrists i think because of the woman being with me.I got a telephone call from a Physiotherapist who basically rattled through everything & stated that the trauma in my bones could have been from Years ago, I was in a very abusive marriage but no one has physically hurt me since I left over 30yrs ago & I hadnāt had any severe shoulder & collar bone pain until around 5 yrs ago! She also stated that Calcification was good!? As if I was stupid & when I let her know I wasnāt stupid in a polite way she said she would make an appointment with someone else for me & I told her I didnāt want to be passed from pillar to post & if she knew what could help I would rather just have an appointment with her but Iām still waiting over a year later. I have letters from the Rheumatology dept. From over 2yrs ago saying āyour referral is being assessedā or words to that affect.
Getting in touch with this website has been a blessing which has given me the strength to fight for my health, just knowing there are other people who understand!
I'm so sorry to hear of your situation. I too had almost a decade of the most awful sweating, particularly on my head and face. It was an absolute nightmare, trying to work face to face with people.I had several spells of the most awful fatigue and experienced aches and pains, soft tissue issues all my life.
Unbeknown to me a GP in 1989 tested me for rheumatatoid factor, which was neg.
5 years ago I was given a diagnosis of seronegative RA.
Bloods mean nothing in the situation you find yourself in. One on three people with RA are seronegative.
Please visit your GP ask about seronegative RA and ask why you are not being referred?
Write a complaint to the practice manager if you do not get a referral.
And, do call the NRAS helpline, they will give you lots of support and guidance.
Thank you & I will ask for this test as Iāve never heard of it! Iāve told the Doctor my Auntie has RA & itās as if Iām talking to a wall or I get the āoh yesā statement in the nicest way but the little Iāve read of my files made me cry because they are inaccurate or out right lies! I will let you & the other caring people who have taken the time to advise me know how I get on & intend calling the NRAS helpline tomorrow.
Iād want to see a different GP and ask what blood tests they are doing. Ask for the results. Could this be peri-meno/meno as the chest upwards sweats/heat are classic? Obviously you have other symptoms that need addressing too. I had the classic meno heat for 3 years then subsided into occasionally. Also many meds cause side effects of sweating/night sweats. Hope you get some solutions and a referral to someone more then a GP who can investigate. šš»š
Are you in the U.K.?If you are please ask your GP to refer you & your blood tests to a Rheumatology consultant to get a professional clinical diagnosisā¦..it sounds as if you have a lot going on that might need more that one physician to deal with.
I do hope you manage to find the right treatment soon.
Are you self diagnosed for RA as it's really a simple blood test and its positive you have it if not then you still might but you need to talk to your GP. I am puzzled though as thyroid again is a simple blood test and you'd be taking medication for it from the time of diagnosis so some 20 years it doesn't get better on its own. So whilst we can't give medical advice or diagnose you, my advice is you need to talk to your GP and go from there. Are you by any chance feeling a bit down and if so it really is important to talk to someone. The symptoms you describe could obviously be anything or indeed nothing so please don't despair but call your GP tomorrow, it does sound like you might be experiencing a sort of anxiety and that might may you feel really ill so please get help and don't self diagnose as worrying about a problem you might not have is just going to make everything worse. Can you talk to a friend or relative or even your local vicar or their pastoral team might be worth contacting. You don't need to be a churchgoer but might find simply reaching out to a real human much easier than you think and no one will judge you. I wish you well. x
I will add, if you have been diagnosed with Fibro its a rough illness and can like RA cause anxiety and depression, as so much pain and change to your life has all these knock on effects. Your Doctor should be able to assist with medication to help with the fibro such as pregabalin or pain relief or both. Re RA autoimmune and fibro have a lot in common and you can have many forms of autoimmune and be sero neg and sero positive.VitD can cause excess sweating if deficient which I got first before my RA was finally diagnosed.
It takes time and persistent calls and a diary to write down what is going on in the body and when. Keep pushing till you get help!
Thank you so much for your support. I take vitamin D + k2 in peppermint oil but due to how much my life has been impacted Iāve been apathetic recently. My Doctor is friendly & Iāve been on Gabapentin which was no use to me as I ended up addicted to 900mg & was constantly sleeping & nothing got done. I have embarrassing symptoms that by process of elimination Iāve worked out is caused by something in tablets. I thought it was the chalk & asked the pharmacist if soluble would cause the same problem & he said yes. The symptom is just an insult on top of this immense sweats. I sit on my dogs cool gel pad & it ends up roasting. I canāt have anyone in my house because when the heat & sweat happen i have to pull my top up & trousers down. I would wear a housecoat all day if possible but itās heat then normal cold. Also I have a dog that relies on me to get out.
Iāve read up on so much information, that RA seems to be the diagnosis.
As you say I need to keep pushing & keep a diary.
I feel that they donāt want to diagnose me because diagnosis means further expense, I have a nice Doctor now but they donāt have appointments, just call at 8am & I donāt want an agency for the day as they only deal with emergencies.
Thank you again for your support & advice. Just getting it off my chest helpās.
You really need to go back to your GP and tell him/her what you have told us, in detail. You need some counselling and referrals to Rheumatologist and others. If you are not happy with GP response, ask for a second opinion to which you are entitled. You need some mental support if these things are making you feel depressed. Please ring GP for emergency appointment. You can't cope with this alone. You are ill and you should not feel embarrassed about something that is out of your control. I wish you all the very best and that you get to the bottom of this quickly.
I agree, your suffering from depression, we have all been there and still go there when we have a bad bout, I know I have and do, you do get depression with RA
depression is part of it, you do need as sheila said an emergeny appointment at the doctors or RA doctors
you need the right treatment for pain and right meds for RA to start to feel better, and you need more help and support.
you need to tell them everything you have said on here
sending you lots of love and hope your start to feel better real soon
I understand re the thyroid situation as years before I was diagnosed with ra I started with under active thyroid. However because one gland I believe situated near the frontal lobe was compensating slightly for the other one not working, it pushed me slightly over the level below which I would have been given treatment, so my bloods were classed as fine. For at least five years I suffered all the effects of an underactive thyroid, eg forgetfulness, confusion and the inability to do the simplest things, bouts of sheer frustration and tearfulness. Compounding that was the stress of working full time as although I loved the job of a NNEB, it was becoming ever more difficult. Even though it was my dream job and I'd wanted to do it since the age of 12. I knew then it was either me or job, it was also the unsympathetic way I was treated having just lost my dad, (sometimes the medics have told me that such a traumatic event can bring on symptoms that have lain dormant for years). I was told by one of the leaders of the group who was a nun that I was selfish for crying/grieving and needed to stop. The world seems a scary place at the moment anon, but I want to send big gentle hugs to you. You do need to be more questioning and assertive about your care, you are important and valued, don't accept anything they tell you at face value and get more demanding and never forget you have a voice!
Your very debilitating symptoms are really not disgusting honestly- you must remember that everyone has genitals, sweat glands, bowels, guts etc. When these go wrong it doesnāt make us disgusting although obviously we feel this way.
If I were you Iād go back to your GP and level with them 100% but I wouldnāt mention or ask about RA - which could be a red herring. There are rarer diseases of same family such as Lupus, Sjƶgrenās, Scleroderma, Vasculitis, Myositis and others which are more often misdiagnosed due to their rarity. These can all cause heavy sweats. You mention dry mouth and Fibromyalgia and this flags up Sjƶgrenās to me - blood tests would be ANA, ESR (erythrocytes you mention) and more specific panels of blood tests a rheumatologist needs to run. No doctor can exclude these diseases unless they have run the full panel and examined you, run full MRI of your trunk.
The systemic inflammation running rampant can cause the psychological issues and stress. You absolutely have to get copies of your letters and blood test results find out where things are going wrong with lack of care or referral to rheumatologist and endocrinologist. The only way forward is to take back control and not expect and hope that the NHS will get things right and knows best.
Youāve made a great start coming here to ask and Iām so sad for you that you mention so often in your post that you feel disgusting. Excessive sweating is a sign that your body is fighting off some physical illness - or desperately trying - so please try and see it this way.
Try to put your symptoms into short bullet points for your GP and give them a copy and tell them how long youāve been struggling for alone and the impact this is having on you physically and mentally. Say youād like copies of your blood test results so you can get to know your own baseline and understand better what is normal/ within range and what is not. In this way you will feel a lot more empowered. As the NHS is in such a bad way now itās very important that we get copies of everything and learn how to advocate for ourselves.
And a tip from someone who has learnt the hard way - read up but donāt self diagnose. If you learn about the spectrum of rheumatic autoimmune diseases Iāve mentioned you may have a strong hunch about where your symptoms and signs fit but I urge you not to get too hung up on diagnostic labels. If you suspect a disease like Sjƶgrenās or Myosis or Vasculitis - or still feel you have RA - then you can put these as most prominent symptoms at top of your printed list.
Thereās a lot of confirmation bias around in the medical community and we all have to encounter this as patients. The only way we stand a chance of being taken as seriously as we need to - is by being well informed and not suffering from confirmation bias about ourselves. Your symptoms and existing conditions rule nothing out but they are very non specific where it comes to disease labels. RA usually shows quite specifically in hands and other synovial joints. So you need to be comprehensively tested and request copies of all those test results for yourself. ESR/ Erythrocyte Sedimentation is very non specific and not at all diagnostic in itself. A raised ESR could literally mean anything at all with the symptoms you describe.
Best of luck at taking back control of your health and your life and getting correctly diagnosed and treated but just keep an open mind x
Try looking on the HealthUnlocked website for the thyroid and also on Thyroid UK's website.
You can get symptoms of sweating, poor memory and cognition, depression, high cholesterol. I have an underactive thyroid and have had abnormal blood tests for 20 years. The UK does not generally treat an underactive thyroid until the TSH is 10+, yet it is abnormal at 5 to 10. This is on cost grounds according to NICE. I have always had severe sweats accompanied by severe weight fluctuations since being a teenager but they have improved while I have been taking thyroid medication for the last few months.
You need to get a print out of your blood test results for the thyroid but I think you will need to have them done again - TSH, T3, T4, two antibody tests plus Vit D, B12, folate, ferritin. You will get more details on the thyroid website of Health Unlocked. When you visit the GP, ask if they will do them for you - they might at least do some of them.
You would be best to see an endocrinologist privately - I don't think you can get an appt on the NHS unless your results are wildly abnormal. To make it a bit cheaper, the thyroid website can provide a list of private facilities where you can get the blood tests done at a low cost.
You say in a later post: I have letters from the Rheumatology dept. From over 2yrs ago saying āyour referral is being assessedā or words to that affect. You should follow this up - get in touch with your GP practice manager or PALS on the NHS. Nobody waits two years for an appt!
Try to get some ultrasound scans done on your shoulder. The GP can organise this without a referral.
Finally, do take somebody with you when you visit the GP. If you cannot find anybody, a lot of charities will provide a volunteer.
Hello lovely..there is some good advice on here..I am newly diagnosed..18 months 2 years..ish.Still not found the correct formula ..painkillers and anti depressants are my saving grace for now.I was diagnosed anti depressants to help with the pain and also my attitude towards the pain and the debilitating situation you find yourself in really. When you are in the depths of despair your pain tolerance is practically zero and R A ..Osteo..fibro.. etc all incredibly challenging and painful in their own right without the worries and woes of our personal lives can push you to the very edge.Ive never relied on medication of any description..and was loathe to go on antidepressants but my gp explained the pain depression correlation and was indeed right.. long term physical challenges can damage your spirit and effect your mood and mental health. I felt suicidal..useless..revolting ugly and desperate quite recently..absolutely sick to death of not being able to get out on my own..work..take my dogs out..all those things and more..I bit the bullet and spoke to my gp who listened prescribed the pills which we gradually increased until I felt the clouds lifting..he arranged some calls for me from the mental health team who in turn put me in touch with others who can help you with things .counselling to help you deal with coming to terms with your situation and not beating yourself up about it..its not your fault..assessment to see what aids they may be able to help you with indoors..all round kindness .There is help..its knowing where to start..Covid hasn't helped anyone..the system is overloaded and slow but start with your gp ..tell him how your brain is feeling and thinking ..it will help you to cope more with the physical symptoms of your conditions. It wont cure it but it gets you back up to a point where you can manage and deal with things a little better..Explain your physical struggles... they may be able to chivvy things along for you.. there is light in the dark we just have to get the bloody curtains open.ššGoodluck..every one here is behind you xx
Love the phrase, "there is light in the dark, we just have to get the bloody curtains open" it made me smile.š
Menopause may be an issue? As a woman you will be ignored Iām afraid. I would go to your GP and ask to be referred to a Rheumatologist. I would also read the NRAS site for info. Also ask your GP to refer you to IAPTS.
You donāt score any points by suffering. Take control of things and insist they get to the bottom of things. Many immune deficiency conditions share symptoms, so getting a āproperā diagnosis can be tricky. Take care x
It's worth persevering because I finally had a f2f with the practice nurse who said she wanted to build a picture of what's happening to me and discussed putting me back on hrt having been taken off it 8 years ago. I still live in hope and am waiting for an appt for this. I'm going to mention it when I have my first f2f with rheumy in nearly 3 years.š¤
It is hard to feel worthwhile when the medical system has failed you. . Keep trying to get to the bottom of this and know you are worthy of answers. Best wishes.
Oh how I wish I had the experience to give upu a good answer. Although I have PA/RA/OS. I'm not good at explaining it. All I know is you are not alone. The people on this forum are wonderful. When I'm very low I just sit and read the posts I soon perk up. Bless you I hope one of your requests leads you to the help you deserve Xxxx
I'm so glad you have made the first step by joining our NRAS HU site. You have been given lots of great advice on here and thankyou Mmrr has recommended you calling our NRAS helpline number is : 08002987650 I was going to say get in touch with me in Membership and I can do an order for some of our publications for you over the phone but they will be able to put together a pack to send you so that when you do get some apts set up you have done some reading. If you do struggle with blurred vision you can download them to your PC if you have one and then you can adjust the size of the pages to read more easily, so try and see if you can ditch the tv for a while and do some reading so that you are really prepared for those apts.
Sarah on our helpline has written a great article in our Spring 22 NewsRHEUM Members' Magazine "Making the most of your medical appointments". As our next magazine is due out in September, when you call say Tracy said you can include a copy of the Spring 22 Magazine in the pack of publications she sends you. She may also recommend our Here for You service which matches you to one of our trained volunteers all who have RA themselves nras.org.uk/resource/here-f... I know counselling has also been recommended which is great but this could be a good first baby step to opening up to someone verbally to then get more out of any counselling sessions you have in the future. Take care and well done for reaching out to this fantastic community who will be of great support to you.
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Update on prescription .. update today 3rd
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