Fibromyalgia

Mandy · 14. 2021，17：54

大家好，我最近经过长时间的医生没有认真对待我，我最近被诊断出了，但是现在我被诊断出了他们只是让我继续下去。我感到失望和沮丧。每天痛苦和夜晚，隧道尽头没有光

Chris_R · 14. May 2021, 18:03

欢迎到在线社区great to see you posting.

Recently being diagnosed with fibromyalgia can be very daunting and make you feel scared.We are here to try and help and understand your situation and work with you to get a better understanding of your diagnosis.Has you GP given you any medication for pain relief? you didnt say.

Here are a few links to help you.

Fibromyalgia | Causes, symptoms, treatment | Versus Arthritis

Managing your pain | Treatments and self-help (versusarthritis.org)

Arthritis and depression: what you can do about it (versusarthritis.org)

希望这些链接以某种方式为您提供帮助。同时，请进入我们的论坛，并与那里的人们交谈，所有人都友好和理解，因为我们都遭受了各种形式的关节炎和痛苦。

All the best Christine

Mandy · 17. 2021年9月14：20

Yes I have codeine for pain ,but it doesn't work.

Mike1 · 18.Sep 2021, 06:10

I have all the symptoms of firbo on top of my OA and everything else, my GP said that as there was no definitive test for it and as he would only prescribe morphine, which I am on already, he would not investigate it further; he even said "after all it is just another label for you".

Mini · 18.Sep 2021, 10:08

我有Fibromalgia in tears this morning as pain is so bad I have come off my medication Duloxatine as makes me so 4gettfull and like im in a daze all the time Im waiting for spinal surgery been waiting now 24 weeks they say its a 15 month wait The burning in my joints is so painful on flare ups but I just cant be on medication that makes me feel so awful just doesnt agree with me

我想知道天气2放弃我的Aqua有氧运动课，我每周做2次，直到我的手术后，我的脊柱上的2次在我的脊椎上是否有太多2号

Trouble is no one seems to give u a plan at hospital 2 follow while your waiting 4 surgery on whats not good 2 do and whats right 2 do

Im struggling with my stairs as crawling uo them im trying to find somewhere 2 live on ground level

I can honestly I have never felt so low in my life I cant even keep a relationship like I am I hate myself 4 ending up like this falling out of a moving car has ruined my life like this having both knees replaced and hip abd spinal stenosis prolapsed disc I just feel like I want my life over im fed up waiting 4 my ops I feel 4 u all having pain as its awful enjoy ur day

Mandy · 18.Sep 2021, 13:24

I think these doctors need to be kinder,more understanding wouldn't go amiss,makes me so angry .

Mandy · 18.Sep 2021, 13:24

乔纳 · 19. Sep 2021, 11:33

Hi Mandy,

Some doctors recognise fybro some don’t like Mike said it’s a label. They don’t know what’s wrong and don’t have the finances within the nhs govt guidelines to find out I’ve been appalled by my treatment 9 years ago they said fybro and I’ve fought bitterly since then and X-rays have shown osteoarthritis in nearly every bone in my body plus a skin condition I’m also autoimmune and have iron deficiency with high inflammation markers felt dreadful for years but all I got was oh it’s not that bad well I said it is that bad and until you suffer it then don’t comment needless to say I’m non compliant or a serial attender I’ve even been called hysterical a bone spur in my spine pushes on a nerve I couldn’t raise my right arm seen by a dr who was 6 months away from qualifying and insulted so I was calm told him straight what I thought and left (non compliant) I’m angry, hurt and humiliated but now I won’t go near one, one even yawned when I was explaining my pain guess he read front page of my notes fibromyalgia

I hope you find an understanding doctor and get the help you deserve take care

love Jona

Mandy · 19. Sep 2021, 16:09

谢谢理解,你很善良。

乔纳 · 20. Sep 2021, 20:43

Just look after yourself and be kind to you

Tracie · 12. Jan 2022, 22:53

Hi

I saw a consultant last year he tested different places pressure points on my body all were painful . He explained if they were tender n the way I have been feeling with exhaustion it was fibromyalgia. Fibromyalgia goes hand in hand with oestoatheritis. He was very nice gave me a leaflet to explain. And recommended physio keep taking drugs from dr. I think def be kind to yourself n if you are tired rest dont feel bad cause morrow you can do a little exercise. Def helps take care tracie x

Ltrus81 · 17. Jan 2022, 22:34

Hi Mandy,

I have fibromyalgia as well as osteoarthritis. I take 40Mg of amitriptyline, there are a number of drugs in the same family as amitriptyline I would definitely push for something, it’s made a huge difference to the sleep I get but I have to say it doesn’t help the pain.

For the pain have 2 weekly acupuncture and cupping treatments I also have a tens machine which has a fibromyalgia setting so it runs for a lot longer than other setting and heat always helps I have a wheat bag and a hot water bottle I can wrap around my back.

Rosyrojo · 18.2022年1月,19:04

I was diagnosed Fm over 17 years ago. Soon followed by Rh. ARthritis. I take no prescription drugs for either condition. Have had adverse affect from prescriptions in past. SElf care, determination and nutritional guidance -not avail on NHS. For FM- pacing techniques essential. Learn to recognise onset of fatigue. If unable to cease activity/work at that moment .. rest up asap. Psychologically tell yourself ‘ “I am deserving of a break’, or. I’m doing little/nothing.. I’m on holiday.””(Even if you are not!!).

I take high dose turmeric capsules (with other ingredients) called {xxx}* . For FM I find high dose magnesium.. magnesium citrate/Elemental Mag. {xxx}* I have taken organic Chlorella 2tabs 500mg ea meal for over 20 years. Since then my iron levels have remained normal. And only had 1 virus during that time.

Med `herbalist sent test to Germany for “leaky gut syndrome’ over 9yrs ago. Confirmed leaky gut syndrome , ie: good gut bacteria non-existent, bad bacteria over high limit. ADvised gluten free diet and many different baccilus capsules over 4 months. Then retested and correct level of glut bacteria confirmed. Remained gluten free ever since. Much research available on leaky-gut sysndrom+ associated with Rh; Arhritis and FM. Much associated with gluten.

切勿喝酒或烟。锻炼 - 能量允许时进行轻柔的步行。否则，选择一些“与肢体炎”家庭视频进行锻炼以支持肌肉关节柔韧性/力量。我每年只见两次顾问风湿病学家。坚持进行血液检查的副本，并向我的医学草药医生展示 /发送。所有私人待遇和昂贵。为收入有限的人而悲伤。对于像我们这样的人来说，可悲的是，NHS没有成为希望的服务。由于缺乏对非药物疗法的研究，对饮食/营养的知识/指导很少。自依赖必不可少的，但确实很努力！祝福和好运。

*Edited to remove product names. Anna (Mod)

安娜 · 18.Jan 2022, 19:12

Hello@Rosyrojoand welcome to the online community,

Thank you for joining in and telling us of your experiences with complementary treatments and medicine to help deal with your FM and arthritis. I also use the Versus Arthritis exercise videos and can highly recommend them to help keep flexible and reduce pain. I agree that self-care is so important too - well done for embracing that.

阅读您服用的补充药很有趣。他们并不适合所有人，但是有些人肯定会发现他们有帮助。但是，在停止处方药或开始服用补充药物之前，您应该始终先咨询GP或风湿病医生。

You might be interested to have a look at the Versus Arthritis website that discusses the benefits and risks of alternative and complementary treatments:

//www.wfysxh.com/about-arthritis/complementary-and-anternative-treatments/what-are-complentary-and-complementary-and-alternative-treatments/

Best wishes, and keep posting,

安娜(Mod)

Eirianwen · 20. Jan 2022, 10:39

我已经被处方了阿米托普林，但我也服用了姜黄，我觉得很有帮助。我的多肌痛再次爆发，所以我回到类固醇3周。衰老过程是如此残酷！

Poppyjane · 20. Jan 2022, 11:01

欢迎@eirianwen到在线社区

I see that you have been following this interesting thread and mention that as well as turmeric you are taking steroids to help you with a flare up of polymyalgia. As Anna says many people combine both types of treatment under guidance and work out what suits them.

I hope you have had a chance to look at the various links above on complementary therapies, polymyalgia and managing pain. All of them provide interesting information and will no doubt create more questions or comments , so don't hesitate to contact us again and share your own experience.

If it would be helpful to talk to someone do contact the Helpline

//www.wfysxh.com/get-help/helpline/

Take Care

Poppyjane

Crazycatlady55 · 24. Jan 2022, 10:36

嗨.....我苏（Sue），除了手指和脚趾的OA外，我还被诊断出患有纤维。从那以后，我还发现自己的下背部，臀部和膝盖有OA。我被一位风湿病学家诊断出，他看见我两次，并将我送回GP。我见过2个GPS，他们显然不知道如何处理纤维。我当时患有高剂量的pregabalin，但是GP由于影响了我的肝脏而将其切下来。除了饮食和运动以自我管理之外，我被告知没有其他建议。无论多么温柔，锻炼都会使情况变得更糟。就在我的智慧结束时。我也有家人来找我的问题，只是想躲藏起来。我现在正在寻求咨询，希望这会有所帮助。 How does everyone else cope? Thank you for reading this

PeterJ · 24. 2022年1月，10：53

Hi@Crazycatlady55have a look at the following, it might have a few useful tips

//www.wfysxh.com/about-arthritis/managing-symptoms/emotional-wellbeing/

Jo110809 · 11. Mar 2022, 14:16

Hi Mandy, <\/p>

I have fibromyalgia as well as osteoarthritis. I take 40Mg of amitriptyline, there are a number of drugs in the same family as amitriptyline I would definitely push for something, it’s made a huge difference to the sleep I get but I have to say it doesn’t help the pain. <\/p>

For the pain have 2 weekly acupuncture and cupping treatments I also have a tens machine which has a fibromyalgia setting so it runs for a lot longer than other setting and heat always helps I have a wheat bag and a hot water bottle I can wrap around my back.<\/p>","bodyRaw":"[{\"insert\":\"Hi Mandy, \\nI have fibromyalgia as well as osteoarthritis. I take 40Mg of amitriptyline, there are a number of drugs in the same family as amitriptyline I would definitely push for something, it’s made a huge difference to the sleep I get but I have to say it doesn’t help the pain. \\nFor the pain have 2 weekly acupuncture and cupping treatments I also have a tens machine which has a fibromyalgia setting so it runs for a lot longer than other setting and heat always helps I have a wheat bag and a hot water bottle I can wrap around my back. \\n\"}]","format":"rich","dateInserted":"2022-01-17T22:34:02+00:00","insertUser":{"userID":118803,"name":"Ltrus81","url":"https:\/\/community.versusarthritis.org\/profile\/Ltrus81","photoUrl":"https:\/\/wa.vanillicon.com\/v2\/a8a031bd975500207db1c1944b3beb45.svg","dateLastActive":"2022-01-17T20:18:47+00:00","banned":0,"punished":0,"private":false},"displayOptions":{"showUserLabel":false,"showCompactUserInfo":true,"showDiscussionLink":false,"showPostLink":false,"showCategoryLink":false,"renderFullContent":false,"expandByDefault":false},"url":"https:\/\/community.versusarthritis.org\/discussion\/comment\/689187#Comment_689187","embedType":"quote"}"> https://community.versusarthritis.org/discussion/comment/689187#Comment_689187

戴安娜62 · 23. Mar 2022, 20:27

Hi everyone I was recently diagnosed after a long time of doctors not taking me seriously, but now I'm diagnosed there is no help they have just left me to get on with it.i feel let down and depressed.in pain every day and night and no light at the end of the tunnel<\/p>","bodyRaw":"[{\"insert\":\"Hi everyone I was recently diagnosed after a long time of doctors not taking me seriously, but now I'm diagnosed there is no help they have just left me to get on with it.i feel let down and depressed.in pain every day and night and no light at the end of the tunnel \\n\"}]","format":"rich","dateInserted":"2021-05-14T17:54:16+00:00","insertUser":{"userID":116323,"name":"Mandy","url":"https:\/\/community.versusarthritis.org\/profile\/Mandy","photoUrl":"https:\/\/w3.vanillicon.com\/v2\/3bb30e7b7a68a580c153eb2b49c9fdbf.svg","dateLastActive":"2021-09-19T16:30:35+00:00","banned":0,"punished":0,"private":false},"displayOptions":{"showUserLabel":false,"showCompactUserInfo":true,"showDiscussionLink":true,"showPostLink":true,"showCategoryLink":false,"renderFullContent":false,"expandByDefault":false},"url":"https:\/\/community.versusarthritis.org\/discussion\/54251\/fibromyalgia","embedType":"quote","name":"Fibromyalgia"}"> https://community.versusarthritis.org/discussion/54251/fibromyalgia

It’s very isolating. I was diagnosed with fibromyalgia in 2006. I’m pretty much left to get on with it. There’s no groups in my area, I don’t drive and have only family and limited friends support to rely on. Meds don’t do much and have many side effects which can be worse in the end. Learning to pace yourself is very important to helping minimise flares. Sometimes doing something that you really want can cause a flare, however sometimes it’s worth it depending on what the occasion is. If you know you have an important event coming up then rest as much as you can beforehand to reserve energy. It’s difficult to get family and friends to really understand the complexity of this condition, I found passing on links to websites useful so they could read up stuff at their leisure, that way they don’t have to sit and listen to lists of ailments associated with fibromyalgia. I think there should be more accessible resources available for people with long term chronic health conditions. Perhaps things will move forwards soon.

Fibromyalgia

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