Fed up of being in pain.. :( : I'm so depressed from... - NRAS

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Fed up of being in pain.. :(

regina79
regina79
69 Replies

I'm so depressed from all the pain :( I can hardly walk cos of both hips now and knees pain. As a consequence my lower back is pulling badly. I can't sleep cos of the pain on each side. My shoulder and arm are in agony constantly. I can't exercise. I can't live my life!!! I know you all are in the same situation or worse, so apologies for the rant in advance but I also know you are the only ones who do actually understand what I'm going through.

My fingers on both hands have also started hurting really badly. It got even worse with the air con at the office yesterday. I guess I'm just angry that despite all my symptoms I can't get a treatment yet, not until my inflammation markers are high and positive. I guess the pain does not relate to the amount of inflammation. :(

So depressing. I just want a RELIEF. I can't go on like this.

69 Replies
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Hessie5

Hey Regina79 - I share your pain you’re not alone. The pain for me intense, brings tears as I think is this how things are going to be. My frustration is I am on the biologic but still feel the same. Difficulty walking - pain radiates all round - need that break, that rainbow of change ....Ibuprofen helps a little on work days. Going to see a private rheumatologist for a second opinion today.. Sending you hope and blessings that things shall improve soon. This is a mountain for sure.

Do go back to your consultants and push for help!

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regina79
regina79
in reply to Hessie5

Hi Hessie5,

thanks for your words of support. It does help me feel less alone.

Poor you :( I guess not all treatments help with the pain, but perhaps they will help with the progression of the disease. I really hope so.

I can't even take Ibuprofen, I get very severe side-effects from almost everything. I think that it will be hard for me to get on with any of the RA treatments given my issues with side-effects. xx

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BonnieT
BonnieT
in reply to regina79

Can you take Tylenol? It helps me get a good five hours sleep.

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regina79
regina79
in reply to BonnieT

I'll look it up, thank you! x

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BonnieT
BonnieT
in reply to regina79

I can’t take ibuprofen but acetaminophen (Tylenol) is ok. I react badly to meds of any kind. I had to come off of methotrexate as I got very ill while taking it. Going to rheumy today to see what comes next. My original tests came back vague. She put me on prednisone and in three days I was pain free. She used that as an indicator it was RA and put me on methotrexate. Year and a half later it wasn’t working and I was ill. I just told my primary care doc last week that my arms hurt so bad. And she said maybe it’s PMR. so when I see my rheumy later I’ll ask about that. The R stands for rheumatica but if I leave here to find what the PM stands for I’ll lose this post. I’ve never mentioned my arms to my rheumy because of all the pain I have in my legs and knees taking the spotlight. Ok, I’ve remembered, the PM is for polymyalgia. Wishing you help with your pain.

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regina79
regina79
in reply to BonnieT

Same. Can't take high dose of Ibuprofen... plus I get kidney pains.

Likewise...... we are very similar. I'm just having such a hard time with the Pill too as the one I've been taking for the past year for Endometriosis has been discontinued. :( I'm having all sort of severe allergy reactions and side-effects. Even with some vitamins or herbs! :O craziness.

That is amazing about Prednisone! Fair enough, maybe I'll ask my Rheumatologist to prescribe me this too!

Oh no... :( so sorry to hear. What did not work exactly? yeah, I heard of that too......... :( I hope you find out the right disease and diagnosis. It's so important to have straight answers.

I know that my blood tests for RA specifically were positive and elevated. These were also repeated twice to make sure. So I guess there is no doubt about it but then nothing is 100% sure, plus you can have overlapping diseases I guess. Specially within the Autoimmune spectrum! x

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BonnieT
BonnieT
in reply to regina79

Prednisone has limitations and special ways to take and wean off of. Not a drug to take all the time. I use only with flares.

I was on MTX for a long while without great results but some. Then I got deathly ill and couldn’t go to work. As soon as I was off MTX I improved greatly. Will see what she says later today.

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regina79
regina79
in reply to BonnieT

Fair enough. Yeah, I wouldnt take it every day anyway. x

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sylvi

Hugs darling I so know how your feeling . xxx

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regina79
regina79
in reply to sylvi

Thank you xx

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Ali_H

Please don’t apologise for a polite rant... this is the right place for such out-lettings!

I’ve no magic wand so am replying in the hope that numbers of ‘supports’ eases the mental strain of your situation and in hope that you get better answers soon!

Ali

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regina79
regina79
in reply to Ali_H

Thanks so much!! :) xxx

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helixhelix

Have you had your ultrasound scans yet? And did they show inflammation? If the answers are yes and yes then HASSLE your rheumatologist to be seen before October. It shouldn’t matter if the blood tests aren’t showing raised inflammation markers if there are clear signs on ultrasound. I’m lucky as my rheumy looks at me, not the bits of paper, as I rarely have raised markers.

It may be that you are in a cleft stick if you have fibro and early RA, as your pain levels and inflammation levels don’t match.

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regina79
regina79
in reply to helixhelix

No, still waiting for them to send me a referral. Normally they are really quick.. After that I can ring the imagining place and book an app. I might email the PA again!

I have no idea what the ultrasound would show as I don't visibly see any swelling, despite the pain in hands etc. No swelling. All I can see is a finger that seems to have changed shape and have increased pain. They might find something in the back of my knees though as I can feel they are inflamed all the time.

I guess it's just very early stages :( And they need to meet all criteria in order to diagnose RA. x

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JFlay
JFlay
in reply to regina79

Hi, I didn't have any visible swelling either but they could see some 'activity' (as they called it) inside some of the joints, they could also see that none of the bones in the joints looked damaged. I doubt they will ultrasound your knees, they told me not possible on knees it can't see in there, x-rayed instead.

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regina79
regina79
in reply to JFlay

Oh really?! I thought that they could see it in knees. Maybe she doesn't realise. I'll check with her again. So what joints did you have ultrasound on? And they weren't looking different at all?

Interesting and good to know xx

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JFlay
JFlay
in reply to regina79

Big toes, forefingers, and thumbs. They go along the sides of the joints. I think knees are too enclosed for it, but you never know possibly where you're going has different equipment?

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regina79
regina79
in reply to JFlay

I have pains in my middle, index and little fingers; but mostly on middle ones on the left and index and middle fingers on the right hand.

I think the private place I go to has the latest equipments with Doppler ultrasound imaging too, but who knows. I'll check with her though, just in case she doesn't know. x

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JFlay
JFlay
in reply to regina79

Be interested to know the difference between private and NHS 😁 hope it goes well.

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helixhelix
helixhelix
in reply to regina79

I’ve had ultrasound on just about all my joints, including my knees, as my rheumy has a small machine in her office, so she tends to check any joint I say is painful. And the joint doesn't have to be swollen to show synovial inflammation although if they are then it tends to show more!

It’s fun to watch as you can see the inflammation as it shows up red!

The bigger machines are also more sensitive, so if it’s there they should find it. Keep pushing for that referral!

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NeonkittyUK

Agree with all you've said, HH. How I wish I had a consultant with a machine in their office. They refuse to let me have any ultrasound on my joints and get nasty if I ask. Budgets I guess. In 24 years I have only had an initial isotope bone scan on my entire body (BUPA) and an NHS DEXA. They wont scan your joints at my hosptial unless you commit to an operation. Told me it isn't going to prove anything?? Hmmmm. Good luck Regina. Feel better soon I hope.

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helixhelix

I think every consultant should have one! Ok they cost a few thousand, but would save loads in sending people off to the huge machines when you only need a quick peek at a finger or toe. Since my blood markers rarely budge it’s the only way she can check what’s going on.

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NeonkittyUK

True. I am sure it would save a lot more doing those smaller scans.

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JFlay
JFlay
in reply to helixhelix

My rheumy's have the ultrasound machines in their rooms too but not able to check my knees 🤔 shame as they give me a lot of trouble when they're off. Ah well they saw what they needed elsewhere I suppose.

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wishbone
wishbone
in reply to regina79

My diagnostic blood test was positive for RA, so thankfully no waiting for treatment. No red swollen joints either but plenty of pain. That was 16 years ago and feet and hands are now badly deformed by RA, yet I've had little in the way of swollen joints over all those years. Wish I could say the same about pain!! :-(

Good luck getting treatment.

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regina79
regina79
in reply to wishbone

Which blood tests were positive? I only have Anti-CCP and ANAs positive, the inflammatory markers (ESR, CRP) were not elevated. That is why they are waiting...... for treatment :(

Plenty of pain indeed. And mostly symmetric pain for me (apart from shoulder), which is definitely a good indicator of RA.

Oh no, I'm really sorry to hear that it got so much worse. So did the RA drugs not help to halt the disease progression??! I thought that if you take them early enough they would help with the progression? I guess every case is different.

How many and what drugs are you taking for it? They should give you something for the pain too.. additionally. x

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wishbone
wishbone
in reply to regina79

I'm not sure what was tested as I knew very little about RA back then so never thought to ask. I did wonder why my GP looked so concerned about what I assumed was just a bit of arthritis!...if only I knew what lay ahead. :-O My rheumy has since told me that I have an aggressive form of RA.

My RA was fairly well controlled for the first 8 or 9 years with methotrexate though joint erosion was taking place albeit at a relatively slow pace. It was when I contracted other chronic health conditions that the trouble started with meds, hence my RA has been poorly controlled for the past few years and joint erosion seems to have accelerated. Guess I've been one of the unlucky ones who have problems taking all types of immune suppressants.

Been taking a newish class of med called baricitinib, which, with pain relief, has helped for the past 9 months I've been on it. Unfortunately I've had to come off it for the last 5 weeks due to a stubborn infection. Have since had to increase my pain relief and start taking anti-inflammatories, which help but are not as effective as the baricitinib was. Pain relief is the max dose of slow release tramadol..taken with paracetamol, the anti-inflamm is naproxen, which I have to tread carefully with due to other issues. Fingers crossed that I can eventually restart baricitinib.

As you say - we are all different, and as mentioned above I happen to be one of the unlucky minority who have problems treating the disease. So don't go thinking that if you do have RA that you may well follow suite as there are lots of different meds to try. It can take a bit of time with some people, but most find something that works for them sooner or later.

Take care

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regina79
regina79
in reply to wishbone

Fair enough. Bless you :( I guess that you tested positive for the RA antibodies plus you must have had elevated inflammatory markers in your blood.

From what I read having elevated RA antibodies (anti-CCP) equals to a more aggressive form of RA :( as opposite to people who do not have positive anti-CCP.

So people who have high anti-CCP also need more aggressive treatment and maybe a combination of treatments..

I'm sorry that you didn't get on with lots of drugs. I am very sensitive to all drugs too, even paracetamol and Ibuprofen (and anti-inflammatories). It's awful I know. that's exactly my fear if they do actually give me these treatments, whether I'll be able to take them or not.

And if not then obviously the disease will progress.

Sorry to hear about your recurrent infections too :( it must be really hard. x

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wishbone
wishbone
in reply to regina79

Thanks Regina, you know more about the disease than me! :-) As for it being hard going...well I'm one tough dude and take whatever's thrown at me in my stride!..... What a load of tosh I can speak on times... I'm a right old whinging wuss truth be known! :-( :-)

I wish you the very best with treatment.

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regina79
regina79
in reply to wishbone

Haha. It's only because I am super curious and like to know what's going on to my body.. so I do A HELL OF A LOT of research :o and I don't stop until I find everything I need to know! Plus, every time I get referred from blood tests I now like to know what exact tests they are, so I ask the nurses if I can take a pic of all those tests on the forms :o and then I go home and research to understand. Also my Rheumatologist did sit down with me to go through all of them to understand which ones were positive or not and what they were. I also ask lots of questions :o I like to know what happens to my body....

Thank you so much! Yours is the right attitude! You need to be able to be tough in these circumstances. x

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wishbone
wishbone
in reply to regina79

I'm a 'stick head in sand' type, so the exact opposite to you. At least that's how I used to be until things started going wrong, which is when I joined this club for much needed advice and reassurance. Think I tend to pee off the doctors now with all my questions. :-)

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regina79
regina79
in reply to wishbone

Well my type can get too anxious at times... so that's not great either :o

but it's good to have some knowledge I suppose. But also not to get too crazy and paranoid about it all.

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regina79
regina79
in reply to helixhelix

Rheumatologist said that if she finds the elevated synovial fluid inflammation from the ultrasounds, she will definitely give me treatment. But if she doesn't then apparently we have to repeat blood tests again in October and so on...

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charisma

That is just horrible! The quicker they do some proper investigations like ultrasound, the better.

I had to quit all work within two months of symptoms beginning as it escalated to severe and aggressive so fast, long before any x-rays etc in another two months.

You might need signed off for a while eg until scans etc.

All the best, Regina.

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regina79
regina79
in reply to charisma

I know.. they need to hurry up! Still no news of that referrals. Ridiculous. It's been over a week now. Likely it shouldn't be too difficult to book appointments. The wait is not too long.

Were your blood tests all positive for RA then? My problem is that my inflammatory markers aren't high. So they are being cautious to give me treatment. But I should ask for some pain relief I think.

xx

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charisma
charisma
in reply to regina79

Yes, mine were very high from the first blood test. That might seem fortunate in terms of being diagnosed but not so much in outcome for successful treatment!

Hope you will be at diagnosis soon, x

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regina79
regina79
in reply to charisma

Thanks for this. x

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regina79
regina79
in reply to charisma

So, the secretary of my Rheumatologist has just sent me referrals for the Ultrasounds on: hands, wrists, knees

and ankles. But actually I don't have painful ankles, mostly toes. I need to let her know so that she can edit that! She's being very slow at getting back to me :( x

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charisma
charisma
in reply to regina79

The scans can still show symptoms even if no apparent pain; they know what they are looking for. Best just take whatever diagnostic tests are ordered since they need evidence for whatever condition/s may be indicated by symptoms. X

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Minty1972

🌷

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AngelMar

We all hear what your saying, Sending you a great BIG HUG 🤷‍♀️ and hope you improve very soon. 🤗 X

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regina79
regina79
in reply to AngelMar

Thanks xx

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Tillie20

Hi thinking of you hope you get relief soon x

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regina79
regina79
in reply to Tillie20

THANK YOU ! :) xx

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E_2b

Hi, I'm so sorry you're in such pain and feel lousy.

Once when I was in your situation I went to see a private rheumatologist, that I heard gave steroid injections to people in pain. I rang his secretary I got an immediate appointment without a doctors referal. The rheumatologist examined my joints and gave me lots of steroid injections.

It was a huge help taking away my pain.

I remember he gave me the injections into my shoulder, wrist, finger and knee.

People here will give you lots of advice and I'm sure it will help.

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regina79
regina79
in reply to E_2b

Thanks for your words of support. I had one injection in my hip and one in my shoulder. Sadly they only helped for a week... the pain came back worse after! I'm glad they worked for you though.

How many injections did you have in the same area? x

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E_2b
E_2b
in reply to regina79

Ihad two in my finger and two in my wrist, the second perhaps a month after the first.

My story is unusual and lucky, once I got a botched job of a root canal tooth removed, I got better. The hospital changed my diagnosis from RA to reactivate arthritis.

I so want your pain, weakness and feeling lousy to be gone.

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regina79
regina79
in reply to E_2b

Wow that sounds good. If that means NO pain.

Thanks a lot! :) xxx

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regina79
regina79
in reply to E_2b

so is Reactive Arthritis better/different from Rheumatoid? x

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E_2b
E_2b
in reply to regina79

I don't know but in reactivate if you can find the source of infection and remove it, you don't have symptoms anymore...look up the road back foundation 😊

I'm so sorry you are in pain, don't give up..take all the encouragement you get here and all the good news stories.

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regina79
regina79
in reply to E_2b

Oh I see. Interesting. That's very good..

Thanks a lot! I seem to have not much pain today.. but I had to take painkillers for a killer migraine yesterday so maybe they are still in my system and helping x

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E_2b
E_2b
in reply to regina79

Good wishing you more days like today x

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OneLove2019

All my love and hugs to you--I empathize greatly. Especially annoying when no one seems to get it. Make you feel alone but you are not. We get it here though, please do message me... I recently started having awful pain in my knees and ankles--and no one seems to be listening, thinks it is a big joke. Let's chat my friend.

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regina79

Thanks so much OneLove. I know right? It's hard to explain to docs and people the amount of pain you feel. Thanks! xx

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Troygirl

What!!

Why doesn't your doctor put you on some Prednisone?

That is the only thing that took away my RA flare pain! My doctor started me out on 10mg and it did nothing! Went back to dr then 15mg still did nothing, went back again finally 20mg seemed like the magic amount needed! It was the only thing that took away the pain!

Looks like you have to start taking your own health care into your own hands! Demand help!

Believe me I know about pain, been in endless flares for 7 long months & have been on prednisone the whole time while waiting for the right RA medication to work!

HOWEVER, be careful with the stuff. Long term use can cause sever side effects like Cushingoid which I now have!

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regina79
regina79
in reply to Troygirl

I have no idea. I guess I need to complain to be in pain more.. Is Prednisone a painkiller? What is it? It's great that it works for you! I'm so glad that there's something out there that helps with the pain. Both of my hips are so bad. My knees seems to have got better lately, very strangely!! but then I haven't been walking MUCH...... I have decreased walking A LOT as a consequence to my pain :( very sad.

Did the RA medication work in the end and how is it helping exactly? What meds are you taking for it? xx

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OneLove2019

Prednisone is a steroid and I agree, please check with your Rheumy or GP and see if you can get at least the minimum recommended dose... I know when I was on it helped but I had to get off of it and slowly wean on MTX which isn't helping much.

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regina79

Oh I see, good to know. Is this taken as tablets?

Thanks so much! xx

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OneLove2019

The steroid is tablets -- with MTX you can do pills or injection.

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regina79

I see. Do you take tablets for MTX as well? I wonder if injections are more efficient and have less side-effects. Although..I HATE needles and there is no way I could do them on myself! My worst nightmare :o

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OneLove2019

I was taking pills but switched to injections due to SFX -- honestly, I haven't seen too much of a difference in the injections outside a lessening of nausea... do me a fave and let me know how it works out for you once you toss these ideas to your doctor. Would love to see how it goes.

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regina79

what's SFX... sorry my ignorance :o

I see.... well less nausea sounds good to me. I'll definitely do that, thanks x

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OneLove2019

Side effects sorry--lol

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Leics

Sorry you’re having such a bad time atm. I’ve found nearly all painkillers and anti inflammatory’s I’m either allergic to or they make me unconscious. The only pain relief that takes the edge off for me is Fentanyl patches. They don’t affect my gut because obviously they’re patches and not pills. Had a massive fight to get them but they at least make things a little more bearable. I hope you find a solution soon.

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_tracy_

So sorry about your pain. Please consider that it could be chronic Lyme disease. The sad thing about our medical system today is it doesn't properly acknowledge Lyme disease, the standard tests for it are poor and virtually worthless (many, many false negatives), and even if by some miracle you test positive it isn't sufficiently treated. To properly be diagnosed and treated you need to see a Lyme literate doctor. Here in the US this must all be paid out of pocket (insurance rarely covers it) and it likely is the same situation elsewhere in the world. I had Lyme disease for over 10 years before I finally figured it out myself, even after visits to Mayo and Stanford, supposedly leaders in medicine in the US. Treatment can take years not a couple of weeks like our traditional doctors believe. I've been treating it for over 2 years and I'm getting better but it's been a long road.

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regina79

Thanks for your kind message Tracy. I don't have a bite or a red area which I think are the main symptoms?! And I tested positive (twice) on Rheumatoid Arthritis. I repeated the blood tests for this specific disease.

That is crazy.. so sorry to hear this :( What tests did they do to diagnose Lyme disease? xxx

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Jeppy

Sorry havnt read all

Cbd? Could it help

Good reviews

Thetes a facebook cbd

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regina79
regina79
in reply to Jeppy

I bought that last month but it doesn't always help and not for all pains... Xx

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Jeppy

Sorry yes in hindsight probably the full plant has more properties x

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