Fibromyalgia and bHRT

[dkedge]

I have had fibromyalgia for 15 years, since i contracted "fifth disease" (a childhood disease) from my daughter. I have never been the same since.

It happened to be the same year that i went through menopause (last period).

After 15 years of working with rheumatologists who i felt were just band-aiding the problem i found a functional/integrative practice. After many blood tests they prescribed bioidentical hormone replacement therapy. I started about 11 days ago and though it has completely eliminated the pain in my legs, i feel like crap: floaty head, headaches, upset stomach, other aches and pains.

Has anyone else tried HRT? I have a call into my provider and am waiting for an answer. Has anyone else had good results from HRT?

 

[sunkacola]

Hi @dkedge ....I have no experience with what you are asking, but didn't want you to go with no replies. Welcome to the forum and I hope someone here can relate to your issues and help.

 

[SBee]

Hi @dkedge

My own GP feels perimenopause is likely to have triggered both fibromyalgia and inflammatory arthritis for me so I get how hard it is to be hit with multiple health issues all at once.
I have been on hrt for about 2 years now and do remember I actually felt worse once I started. Generally the consensus seems to be give hrt 3 months to work to its optimum after starting,or after changing a dose\regime. thats hard to try to hang on in there when you feel all over the place. I will say it took me close to a year to get my own hrt regime sorted to a stable level. So much so I have no intention of coming off it if it remains this way.

Unfortunately as with any medications, what works for one doesnt always work for another, and may have side effects - for me, they settled and the benefits far outweighed any negatives. Hrt in my own experience needed a fair bit of tweaking, luckily I had a good gp who is experienced in womens health.
I wish you well

 

[dkedge]

Thank you for your kind replies @sunkacola and @SBee.

@SBee i see that you are in the UK. I've done a lot of google research and so much info comes out of the UK. I wonder if they are way ahead in the hrt game. I doubt my GP would have been knowledgeable enough to put me on hrt, and my rheumatologist (who i saw a few days ago), just repeated all the mostly debunked downsides of hrt. She has been pushing osteoporosis meds on me for years and on top of my fibro i just don't want to risk side effects of those. Besides, if the hrt truly works for me, my bone health will improve. I verified that this rheumatoligist practice gets a lot of "rewards" from pharmaceutical companies. I bet that is why she is pushing these osteo drugs on me. I think i need a new rheumy, or forget them all together if the hrt works for me. (on an aside, my past 2 dexascans have shown small improvements in my bone strength, but she STILL insists on pushing the osteo drugs.)

@SBee, thanks for sharing your experience.

 

[SBee]

Will help as best I can @dkedge do ask anything if you want to. As always I am not medically trained but can offer what I have experienced if it can help.

Yes, although most women in the UK would argue that there is not enough research/knowledge from medical professionals, seeing a comparison with women in say USA and France for instance we do seem in fact to be better at getting much needed help and advice. I was fortunate to find a very knowledgeable GP whose interest is in womens health.

If you havent come across it, can I suggest looking at the UK based site Menopause Matters and the accompanying forum? It was set up by medical professionals and covers many varying parts of all aspects menopause, treatments whether they be hrt or alternatives. bone health is something on some of the threads if I recall rightly.
It can seem a little daunting, as whilst some women have few problems or symptoms at meno, some have very severe difficulties and symptoms and may sound scary , but of course that is the case with most health conditions. also some meds will have different names\availability from other countries and ... What works for one may not for another - again, as seen with fibromyalgia for instance.

Incidentally I also have osteoarthritis and inflammatory arthritis as well as fibromyalgia. Some women have reported that hrt has helped their aching joints - not so for me as my own joint pain and inflammation come from these diagnosis as opposed to reduction in oestrogen (now being replaced by hrt ) as I say, I am now feeling hormones are balanced and if it continues I have no intention of coming off hrt myself.

 

[dkedge]

Hi @SBee. Thank you so much for your response and letting me know about the Menopause Matters forum. I will definitely check into that.

Just a question (or two if you don't mind answering). How do you apply your HRT and is it considered "bioidentical"? Mine is a cream that i use a pea sized amount, estrogen evenings, testosterone mornings, and spread it on an area where skin is "thin". For example the insides of my foreams, or on my neck. Is it the same protocol for you and women in the UK? And i also take a progesterone capsule in the evening.

It is hard for me to know what really triggered my fibro as i got fifth disease (childhood disease i wrote about in first post) the same year i went through menopause. I have tried nearly everything else to tame the fibro beast including traditional chinese medicine/acupuncture and nothing seems to work. This hrt is the end of the line.

I know the word here in the US is that you should not be on hrt for longer than 5 years. However, for women that feel so much better on it, they swear they will stay on for the rest of their lives. What is the UK thinking on that?

The bone strength improvement should be a big win for me if the hrt works out. My rheumatologist is constantly pushing those bone strength drugs on me. I think they must get kickbacks from big Pharma. Is there a push for bone strength drugs (example: Fosamax in the US) in the UK? I am fighting my rheumy on this. In fact with no intervention at all, the last 2 bone scans over the past 4 years show small improvements and she is STILL pushing these drugs on me.

Take care @SBee, and have a pain free (or low pain) day.

 

[sunkacola]

It is hard for me to know what really triggered my fibro as i got fifth disease (childhood disease i wrote about in first post) the same year i went through menopause. I have tried nearly everything else to tame the fibro beast including traditional chinese medicine/acupuncture and nothing seems to work. This hrt is the end of the line.

The thing about fibromyalgia is that no one ever knows what triggers it in any individual. We can take guesses, but we cannot know. I gave up trying to figure out why I got it a long time ago, as I decided that it only wasted my energy since I will never actually know or prove what triggered it. For many of us we feel it was a specific illness or trauma, and in fact it may have been. But correlation is not the same as causation, and we'll never know for sure.

You mention that you have tried nearly everything to tame the fibro beast. I just want to say a couple of things that I hope might be helpful to you. One is that no one has found a cure for this yet, and most people who have fibro are not going to be able to make it go away or "tame" it. That doesn't mean you shouldn't try everything! But it does mean that if you do not succeed in making it go away you will have a lot of company because in general, this is not something that can be "tamed". Instead, it is usually a matter of learning to live with it and manage it as best you can with whatever combination of things works best for you.

And one other things...saying this because this is something that helped me. (It may or may not help you). I found that as long as I thought of fibro as a "beast" or as anything negative, or something to fight, it only made things worse for me, because it's my own body that has the fibromyalgia. It's not like a tumor that you can fight against and try to make it go away. So when I thought of fibro in negative terms it only made me feel as if I were fighting my own body. When I learned instead just to treat my body like a soft and vulnerable pet who needed extra care, that reduced the stress I felt around having fibro, which helped me to manage it better.

 

[SBee]

Hello @dkedge
No, ask away! I use Estraot patches, which are considered bioidentical. It seems the most popular methods in the UK seem to be patches and gel form of oestrogen. Transdermal seems to be better absorbed for many. In the UK patches are only licensed to 100mg, but my GP ok 'd me for a 125 dose which I have been much more stable on. Patches changed twice a week. Progesterone wise I hated oral type as the hormonal fluctuations were too severe along my own cycle, so I elected for IUD, Mirena, which gives me a more stable constant dose.

Testosterone for women is still very hard to obtain,but it is gradually being seen as a useful hormone to replace for some women. So those prescribed ( inc myself ) use the types manufactured for males though on a far lesser dose with regular blood checks. I did read a year ir so back that a firm was working on a form of testosterone for women, so a bit more progress going on. Advised to apply on a non hairy part of the body, some use soles of feet or inner elbows, me, my bum cheeks get that honour, a small blob 4 days a week.
Both patches and Testosterone applied alternate sides of body.

As for how long to use hrt, NHS guidelines still say 5 years post meno, to gradually taper down to cease, then see if symptoms reappear.
Ask any woman whose hormones have suffered severe symptoms ( mine were extreme cyclical mood swings,I remain on AD due to this ) and they have no intention of ever coming off,unless detrimental to health. Again,the thinking seems to be changing that providing no adverse risks, there is not a set cut off to stop hrt.

Bone health, I have never personally been pushed to take medications to prevent this, so I cant really comment, but I do read many women appreciate the fact that hrt is seen to help guard against osteoporosis.

As always,non of us here are medically trained to advise,but my own opinion for myself is to research well before taking any meds. Is there a family history that makes her push this on you? Or if you are at greater risk? im sorry I cant offer much help on this one. I try to ensure I have a pretty good diet rich in calcium and Vit D which aids bone health.

Do ask if I may be ab le to help further. Take care

 

[Sueb24]

HRT helped me enormously at the time the menopause. I do recall trying to come of it at one point and feeling like death so
I immediately went back on it again. I was on it for many years. At the time of all the hot flushes etc I also had M.E. and rheumatoid arthritis
so 'life' was largely just existing & little more. The fibromyalgia diagnosis came later & recently I've also been diagnosed with sensory polyneuropathy.

As I understand it, all of these are largely autoimmune conditions. Going through the menopause with all of these other conditions is really hard but do not give up trying @dkedge because there was a point at which I began to feel totally well again - I'd almost say 'cured' (but I was just in remission of course) & life was good. Everything flares up when I push myself physically or emotionally and, as I get older, recovery takes much longer & I personally feel that a lot of my symptoms remain albeit not as bad as they were. It never totally disappears these days but I can handle it for the most part until the next crisis.

 

[sunkacola]

As I understand it, all of these are largely autoimmune conditions

Just to mention............while it is being explored by the scientific/medical community, it has not yet been determined that fibromyalgia is an autoimmune disorder. Some experts think it is, others say it is not. We are still awaiting something definitive.

I personally think that it looks like an autoimmune disorder. But looking like and actually being are, of course, not the same thing.......
I wish they would find out for sure.

 

[dkedge]

@sunkacola and @Sueb24, about the autoimmune aspect of fibro. In all my years of testing, i have never had an inflammation marker come up positive. However, i have recently read that one theory may be neurinflammation...i.e. inflammation in the brain. There is so much information, however no definetive explanation of fibromyalgia.

I agree @sunkacola, i wish they would figure this out.

 

[sunkacola]

@dkedge , I have edited your post to remove the link you put in. Outside links are not permitted on this forum. Please read the forum rules to familiarize yourself with them.
Thanks!

 

[SBee]

Hiya @Sueb24
The sensory polyneuropathy, was this the diagnosis of your recent tests? What advice did they give, or any treatment that may benefit?

I agree having multiple conditions alongside hormonal issues can be unbelievably tough. The only way I managed was to kind of ' triage ' myself, to try to get the best stable level I could on the condition that affected me most, in my case severe MH problems from hormonal problems.

Took about a year to get hrt and AD sorted along with therapy, then I felt more able to work on the pain\chronic fatigue, so the diagnosis of fibromyalgia then inflammatory arthritis took a further 12-18 months to get taken seriously and investigated.

And now my bloods show my underactive thyroid has gone even more haywire! Oh, and high triglycerides ( am thinking the inflammatory side has rocked this ) I'm not sure even my optimism can keep going some days... Think I have my own room permanently reserved in my GP surgery...

 

[Sueb24]

Hiya@SBee. Yes, the nerve conduction tests I had diagnosed the sensory polyneuropathy. As yet I haven’t been seen by the consultant at the Rheumatoid Hospital but the private consultant I saw has written to them suggesting they look at increasing my medication. The PC also recommended a local physiotherapist so I’ve been seeing her for a few weeks now. As to any definitive treatment - I don’t think there is anything I haven’t already tried.

 

[barbara lowcock]

I had a total hysterectomy at 37 and my specialist put me straight on to H R T implantsi was on them for years and i have never felt fitter, he also said to me that if it suits you there is no reason not to stay on it fot life as the benefits far outway the disadvantages, Then i went to live in France where they don't believe in H R T so had to come off it.
I am now 77 and have had Polymyalgia and now fibromyalgia and have never felt so unfit, The doctors say i am to old to go on H R T now but would take it tomorrow given the chance.
All i can say is it's worth a try.